How to Support Your Friend and Loved One With a Chronic Illness

How to Support Your Friend and Loved One With a Chronic Illness

Before I start this post I want to thank you from the bottom of my heart.

Thank you for creating time and spaciousness in your day to read this post with a selection of ways you can support your friend or loved one with a chronic illness.

You’re either here because you’re a friend or loved one to me, Georgie, or, you’re here to educate yourself on compassionate actionable ways to learn how to best support your own friend or loved one.

Whatever the reason that you are here, I am truly endlessly appreciating you for wanting to be the love in the room for your friend and loved one.

Your choice to be here and receive these words means so very much. I don’t take your time or heart lightly. It truly is such a gift to me and others that live with chronic illnesses.

The other reason this means so much to me is that today is World Scleroderma Day (the date of the 29th June marks the death of the artist Paul Klee who passed away from Scleroderma in 1940) and in the midst of a series of ongoing flares, this has meant that physically and emotionally I’ve been unable to show up for this all-important awareness month as I have done since my diagnosis in 2018.

I need you all more than ever, and your chronic illness friends and loved ones need you more than ever too. If there is even just one thing you’re able to action from this post it will create a ripple effect that will transform the lives of those you love and beyond. Thank you so deeply once again for being with me here.

What is a Chronic Illness?

Before I share more about Scleroderma and this all important awareness month let me first break down what a chronic illness actually is.

The definition of a chronic illness is a “disease that is persistent or otherwise long-lasting in its effects”

But even without that description, the name says it all — chronic Illness.

The chronic nature of these illnesses means that day in, and day out, we are faced with an ongoing battle that never ends.

Unlike other sicknesses, there is no end in sight. So, unless you hold out for a miracle or a new cure, these chronic illnesses will follow us in some way, shape, or form for the rest of our life.

Interestingly, the earliest origins of the words ‘chronic’, then known as ‘cronik’ in English, have always been linked to diseases that translated to “lasting a long time.”

In other languages, we can see it in old French words such as “chronique” and directly from the Latin word “chronicus”, from Greek “khronikos” that also illustrate that throughout time this word has had an association with the concerning of time and disease.

To illustrate this sense of chronic-ness for those looking in from the outside, think of a time when you have had a cold or the flu and how that made you feel. Or imagine an injury you have had and the pain you experienced with it. How did you feel? Would you have done anything to make it stop? Did you look forward to the day when you would start to feel better again?

Can you now imagine the above for 365 days a year, every year, and 24/7? Because this is the reality of chronic illness. It feels like you’re carrying a heavyweight which nobody can see but you.

It hurts, it’s exhausting, you’re consumed with ongoing grief and you feel constantly burdensome. And I live with 6 of these chronic illnesses (today I’d like to focus on Scleroderma due to the period of awareness however other posts on these other illnesses can be found here).

World Scleroderma Day – 29th June

June is Scleroderma Awareness Month with the 29th June marking World Scleroderma Day. You can head to the Scleroderma registered charity SRUK to find out more about this right here.

However, each and every single day, however, is important for all of us suffering from Scleroderma.

We are always fighting for our voices to be heard and to raise awareness for all of the illnesses, visible and invisible.

This June I have been unable to create any new posts due to being in the midst of a severe skin flare. As a result, I am truly passionately calling on anyone to read this to help in any way they can.

raynauds hands

WHAT IS SCLERODERMA?

Scleroderma, is a rare, chronic disease of the immune system, blood vessels & connective tissue and affects 2.5 million people worldwide with sadly no cure.

There are a few variations of Scleroderma. These include: Localised SclerodermaLimited Scleroderma and Diffuse Scleroderma.

I have limited systemic sclerosis meaning that the excess of collagen causes scarring and stops the affected parts of the body such as the heart, oesophagus, blood vessels, kidneys, lungs, blood pressure and digestive system from functioning normally. You can read all about my journey with my symptoms and my diagnosis here.

Currently, it’s estimated that 2.5 million people are living worldwide with Scleroderma, including 19,000 in the UK, with 1,300 being diagnosed every year.

This month, SRUK is calling on people to #KnowScleroderma better in a bid to both help people with the symptoms find the resources they need, and help friends and family support those that are suffering from this truly cruel disease. 

This video illustrates Scleroderma in an easily absorbed way:

a photo of raynauds disease

12 Ways to Support Your Friend and Loved One With a Chronic Illness

This post idea came to me in desperation as I have been unable to find a break in my flares to add any new post ideas to the all-important discussion of Scleroderma awareness in June.

This list of ideas for friends and loved ones is by no means complete, however, these are the things that I secretly wish to experience more in my life.

(To anyone with a chronic illness who may be reading this, is there anything else you would add to the list above? Please let me know in the comments and I can add it in.)

Again: Thank you so, so, so much again for reading and taking any action that is possible for you. There are many of you reading this who know me intimately and do all of these things and more. Wherever possible, please lead others with your dedication to love in action.

1. Take care of yourself

There’s not really an order to these supportive suggestions that came to me, however as I was editing the post, I truly wanted to highlight the importance of bathing yourself in your OWN self-love, self-compassion, and self-care. Because like the friend or loved one you’re supporting, you’re also a precious once-in-a-lifetime miracle. 

The notion of self-care and self-love completely eludes so many, and yet taking the time to come back home to ourselves is truly the greatest gift we could all give ourselves.

Most importantly, it is only when you have focussed on taking care of yourself in a healthy way that you can then share the bounty of your self-love and self-care in a healthy way with your chronically ill friend or loved one.

Yes, at this point we can also definitely talk about privilege, but I personally believe that more than ever we are deeply overwhelmed and bombarded with so many different expressions of suffering in any given day. As a result, this is a lot to hold and it can lead to people feeling they’re unable to offer anything at all.

I would personally rather my friends and loved ones came from a place where their cups were full and nourished and coming from their true ability to give.

Because your friend or loved one with a chronic illness like me, might feel like a constant burden so truthfully, we need those that can give from a healthy place rather than an obligation or their own guilt. And we need you so, so, so much.

So with all my heart, I want my loved ones and friends to completely bathe themselves in self-care because otherwise none of the rest of the points below can be actionable when you don’t deeply look after yourself first and foremost.

Another reason why this means so much to me is that I cannot fathom what it must be like to have a body that’s not in constant turmoil. If you know good health, you are the luckiest person in the whole entire world. You hold the greatest treasure. Please, please cherish that and have deep reverence for your health.

2. Research your friend’s conditions so your actions can support this when you are with your friend/loved one

In 2018, when I came out of an appointment that was the diagnosis of my Scleroderma, I was so numb and so empty that I went home, curled into bed, and trawled Google for hours. I couldn’t speak to anyone properly for weeks and I only had the mental energy to copy and paste the same message to many to explain what was going on. After all, I hadn’t even come to terms with it myself.

When my friends and loved ones mentioned that they had researched my condition in the midst of this it truly made my heart melt. These are the relationships that I’m truly so, so grateful for.

I understand that some of these conditions with these unfamiliar names can seem alienating, however, as time goes on, I honestly find it deeply exhausting and retraumatising to explain everything in detail. So, those who do their own research for the most part and then ask for clarification are my greatest gifts.

Even just sharing details above about what Scleroderma is, is very traumatising, as well as this whole awareness month. Truthfully, I have always felt that my dharma is helping people and holding space for the unimaginable, but these past few years have tested my ability to constantly be sharing about my own lived experience so vulnerably.

So, I would beg of those that want to help to please read up on the condition and tell other friends or family members about it. The more people that know, the more research that gets done (and we’ve seen the great blessing this research can birth during this pandemic).

Moreover, once people have taken the time to research my illness, it also gives the great gift of being able to understand what my basic needs are so I don’t have to always feel like a burden for not being able to do certain things.

Basic-needs with Scleroderma can include the following (but are not limited to just this list):

  1. I’m always cold and have severe Raynauds disease (see photo two above) so this means that I cannot get too cold or I can faint or have other complications. This means that in cooler weather I’m unable to sit outside/be outside for too long.
  2. Due to severe Gastroparesis (a common relative to Scleroderma) I am unable to eat much and follow diets such as the low-fodmap diet in order to manage this symptom. I beg of people to please, please, please, please don’t comment on how little I eat and bear this in mind if we eat together. I am physically unable to gain any more weight than I already have so this is a deeply sensitive topic when people comment on this. These words burn in my soul.
  3. I get severely fatigued so my energy is severely different from those without chronic illnesses. There are so many instances of how this impacts my life so please understand that I need hours and hours of rest in the day. I have finally come to peace with resting deeply but it’s still traumatising to hear words such as ‘lazy’ and ‘weak’ in association with this symptom.
  4. I have severe pain in my hands so I can’t open things well or hold things. My hands ache from the moment I wake up to the moment I go to bed. Sometimes this makes me clumsy. People who offer to carry things for me mean the absolute world.
  5. As well as Scleroderma I have other chronic illnesses that give me problems with vertigo (so I am regularly light-headed and can faint).

3. Actively help and show up to raise awareness

To save this section from getting too long I have left a small list of ways you can help me to raise awareness of Scleroderma not just in June, but all year long.

In fact, I’d argue autumn and winter is an integral time for raising awareness due to Raynaud’s problems being even more noticeable and severe.

You have the ability to save someone’s life if you notice one of the symptoms in someone you love.

4. Be understanding and listen

“In order to emphasize with someone’s experience, you must be willing to believe them as you see it, and not how you imagine their experience to be”

Brene Brown

I think that truly listening (to understand), being a witness to each other, and holding space will continue to change the world.

Despite what’s going on with my conditions, I always want to hold space for pain, fear, and hope in others in the best ways I can. And I so long for others to do the same for me and these illnesses I am carrying.

Being understanding and listening are the greatest gift you could give to your friend with a chronic illness.

Thankfully, whilst yes, I personally I can thrive on silence, solitude, and aloneness more than most, I am no stranger to soul-deep loneliness. I long more than anything in the world to be seen, heard, and held in my humanness as we all do.

Profound loneliness and feeling constantly misunderstood are two of the most painful parts of living with a chronic illness for me.

Tragically, growing up, this sense of alienation has always felt more pronounced with my peers who I find get uncomfortable holding space for chronic illness because it reminds them that we aren’t infallible and immortal.

The older I get, and the more isolating this becomes (I have a detailed post on losing relationships due to chronic illness here) however I am slowly learning to accept that if people can’t hold space for me dealing with a chronic illness, then I can’t rely on them to hold space for me with other difficult things.

Ultimately, what this experience has taught me is how I wish people would understand how hard it is to feel loved while being pressured to be something you’re not. It feels so hard to encapsulate in words, but that’s how I feel living with these illnesses.

One of the most uncomfortable portals of self-discovery for me has been learning to heal from feeling abandoned when I have come to realise that people can often love or admire a version of you in their head that isn’t the living, breathing, hurting, real you.

So, if you are unable to witness, understand and listen to your friend or loved one in their current reality than please, please step away and don’t break our hearts.

5. Don’t try to heal them/ fix them

This is such a huge topic and personally, I believe as someone living with multiple chronic illnesses that I am allowed to wish for a future where there could be a cure for my illness. Especially as I have forever been deeply imaginative and idealistic with child-like optimism. It’s just my nature to see the world and all things in it through rose-coloured glasses.

And yet, I have tried and tried and tried to will myself back to health to no avail.

I spend every single day of my life doing this. I’m also bombarded with everyone commenting on what I should do/take and yet they haven’t experienced what it’s like to be in this body of mine.

Ultimately, all your chronically ill loved one wants for those around me is for my pain to be held when they need it. Not to be fixed. Because they are not broken.

Having said this, wellness, ironically, has always been a huge interest for me. I passionately use natural therapies and various modalities of healing practices alongside my medication. And if my intuition and soul calls for something more then I will seek the wisdom where I can find it.

If I approach you with a curiosity to try something new pertaining to natural therapies and remedies then it’s perfectly fine to open this portal of discussion up.

Ultimately, I take sacred stewardship over my vessel and look for new ways to tend to it, and look after it every day. 

These days, I just long for the day to bring all that is needed for me to be of service and for me to extend love. So that’s what I crave help with the most from my friend and loved ones.

Meanwhile, my body relays information and quiet awareness of how to care of myself. And that’s my daily compass.

6. Ask how they are and regularly check-in

As a chronically ill person, there’s often social pressure to ‘perform wellness’ even when I’m in the midst of another sinister flare (I have a detailed post on losing relationships due to chronic illness here).

As a result, whilst answers to questions such as “how are you” might read “I’m fine” on paper I’m definitely not fine. I also need to be able to be more comfortable in my vulnerability, but as I tread this path, it takes immense courage to trust people will still want to be in my life.

Please don’t always feel that you have to be able to find the right words. It’s far better to check in than to give up on us and abandon us altogether.

You can just ask if we’re okay, if there’s something you can do to help, or just sit and be with us if you are able to.

Some days we might just want distractions, some days we might want a soothing cuddle, and other days we might just want someone to sit with us in our pain.

If I am needing to be held in my brokenness, I always check to see if you’re currently able to hold this. If you can’t I truly don’t mind because I always want you to be nourishing point 1 of this post.

However, if you are able to hold space, please don’t try to change the subject if we do decide we want to talk about our sadness or our concerns about our health, and you have expressed you are actually able to hold space. A willingness to meet this sort of vulnerability takes a colossal amount of courage.

In all ways, just simply be there for your chronically ill loved one and show you’re thinking of them. Because most days it can feel like no one truly cares.

Where we are able to be there for someone, it is imperative that we not shy away, that we not let each other down. 

7. Believe Us: Don’t pity/judge/shame them/think they are chasing attention

All we need is your support, love and understanding. And for you to believe us. What we absolutely don’t need is judgement, pity and shame.

I have experienced multiple levels of judgement, pity and shame growing up with chronic illness. And what I know so deeply to be true is that narratives that create shame, poison relationships, and the self, and cause lasting harm can sometimes be eternal.

Over the years I realise that my internal mind has converted the shame and judgment that has been projected onto me into perfectionism. So I find it extremely hard not to allow myself to rest and nothing I attempt ever feels good enough.

Ultimately the cruel exchange of not validating our lived experience creates indescribable pain on top of everything we already battle with. And in my weakest moments, often when I am in the most pain, I have to work extra hard to allow myself to not wallow in the wounds of all the times my illness has not been validated.

Examples of shame and judgment have been revealed in people pulling apart or scrutinizing my methods of healing, situations where people have called me ‘lazy’ when I battle debilitating fatigue, times when I was told I was being ‘overly dramatic’. And so it goes on.

Over time, I’ve trained my tender heart and mind to release the need for outside approval as a prerequisite for my own wellbeing. However, trying to live a profound, balanced life under the weight of that sense of shame has been the hardest thing for me to deal with.

8. Give us time/ be flexible and patient

When you live with a chronic illness uncertainty becomes tethered to your existence. I never know what the day will bring and therefore this makes it hard to plan.

However, this is just how chronic illness and pain works. So my final point is a call for patience, time and flexibility with your loved ones living with chronic illness.

I may not able to be part of your big celebrations, or well on the day for that Zoom call we had planned. Although with all my heart, whenever I know I have something planned with someone I love, I make sure to top up my self-care by a million more per-cent. So, my longing to be with you is always immense.

To you reading this once more: I see you and I love you all for your patience. For not only making it to this last point (!) but also for wanting to take time to learn how to cultivate patience, faith, love and grace for those you love and cherish. You’re a gift to the world and beyond.

raynauds disease

HOW YOU CAN HELP SUPPORT ME DURING SCLERODERMA MONTH AND BEYOND

To accept that modern medicine cannot restore you and that there is no cure is an ongoing grieving process. It can also be exhausting to raise awareness for chronic illnesses.

In May of this year, I wrote a post really leaning in the depth of my vulnerability to share the effect living with Scleroderma, and other illnesses, has on my mental health. You can read this post here.

Any help you can lend to me and other Scleroderma sufferers this month means more than words can express.

So how can you help this very important day? Here are some ways:

  1. Firstly, it would mean so much if you could share this post you’re reading or any of the posts from my Scleroderma series you can find below. This small gesture is so powerful.

2. Beyond this, this post contains all the symptoms I had before I had my Scleroderma diagnosis. Do you recognise any of these in either yourself or your loved ones? If so please help yourself or others by directing them to help.

3. Are you able to share information about Scleroderma to your social media? Please use your platforms to reach as many people as possible.

4. Are you able to deliver leaflets about Scleroderma in your local area? This can include hospitals, GP surgeries, schools, colleges, the workplace etc. Find ways to seek awareness material here.

5. Are you able to make a donation to SRUK? Or if not, do you know someone who can?

6. You can also help me by supporting my Depop shop. All money raised from items sold here is sent to SRUK. The link is right here and I update it as often as possible.

Finally: Thank you. Just so, so much. Thank you for taking the time to read this and engage in any way you can.

I sincerely love each and every one of you so very much and your constant love and support here is the strength that I will use to create impossible things. 

READ MY SCLERODERMA BLOG POSTS HERE

HEAD TO SRUK HERE

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The Face of Depression: Art That Paints A Window Into The Soul by Jennifer Mazur Art

The Face of Depression: Art That Paints A Window Into The Soul by Jennifer Mazur Art

How would you describe depression? It often feels like it is impossible to describe the presence and magnitude of such an illness into words or feelings.

However, is it possible to encapsulate the depth of pain through art?

One artist who hopes to do just this is Jennifer Mazur who I have the honour of featuring on my blog this week.

In this interview, Jennifer explores the face of depression through her breathtaking paintings that aim to paint a window into the soul of those living with mental illnesses.

Raised under the Florida sun and living in tune with Swedish nature, Jennifer comes from a long line of artists. Today, her art is fuelled by her need to address mental wellness and she uses her art as a medium to raise her voice and smash the mental health stigma.

I too deeply believe that erasing the stigma of mental health in our culture begins with sharing our stories and realising that many of us are suffering. And so, I’m so incredibly grateful for Jennifer for sharing her story with us all.

Most importantly, I also hope this interview and Jennifer’s art serves as a reminder that you are never ever alone as dark and lonely as it sometimes seems.

Hi Jennifer! Firstly, can you please tell my readers all about your beautiful art and how it came to be? 

Absolutely. I have been creating art forever, but this year, during the Covid pandemic, I lost my mom. Then I lost my job as a result of wanting to be by my mom’s side.

Because of mom, I found myself naturally moving away from just aesthetically pleasing art to art that evoked emotion and found that it talked to a specific audience about something that pissed me off- The stigma of mental health.

Plus, without a job I’ve had a whole lot of time.

You describe yourself as a ‘Emotive, figurative, mixed media artist’ and on a mission to remove the stigma of mental health. Can you please tell my readers more about this? And how you approach this in your beautiful artwork?

I have spent a huge part of my life “depressed” and with “ADD”. I have found it has been so difficult to get help. Even with friends- when I opened up and was honest, most people seemed to shy away from the topic, with a generic reply like, “Well, it will get better. Go for a walk.” And when I turned to social media I noticed that everything was just…. bullshit. No one was being authentic. No one feels amazing and awesome 100% of the time.

My work features women, “my girls”, who struggle with something they feel ashamed of, because they have been conditioned to think these things are shameful — Depression, ADHD, Bipolar, Eating Disorders, Anxiety, Autism, or just plain ol’ loneliness. The list goes on and on. Because of the fear of being judged, they don’t show up completely. 

It’s as if using an Instagram filter. They show up all sparkly and perfect. However, that isn’t how they want to live. So they are breaking outside of the implied moulds that Society and Social Media expect. In a moment of strength, they decide to share their souls with anyone they trust. So my girls have a single eye that is more realistic, large, and wide open. Inviting people to look deep inside and connect on an authentic level.

Daring to break the stigma that mental health still carries in 2021!

You live in Sweden (one of my favourite countries!) but you’re originally from Florida in the USA. How have both locations inspired your artwork? And you as a person?

OMG yes. I grew up on the beaches of Florida and since being in Sweden I find my solitude in the woods. Plus in Stockholm, I am surrounded by water, which I love. Because of this, my palette tends to gravitate towards blues and greens. 

In the States my life was always so rushed — gogogo! — and here in Sweden it’s a matter of slowing down. At first it drove me crazy, but I have learned to appreciate it. Taking in the moments and enjoying them. And I no longer feed the perfectionist inside of me. Rather, I take things as they come naturally. Both in myself and in my art.

Can you remember your earlier creative memories?

I grew up in a family of artists. So I think my creative side was nurtured from a very early age. One of my first memories was wanting to make a book. So mom took a box, cut it up, made a book cover and tied pages inside with a red ribbon. She then wrote the words I shared and I illustrated them in crayon, paint and pen. Already mixed media! 

Can you please talk us through some of your favourite materials for your artwork?

So many! Everything goes. For example, when working on a canvas (not in my latest collection) I start every canvas by writing my wishes for the eventual owner in graphite. A small blessing of sorts. Then I cover it with gesso, acrylics, alcohol inks, markers, graphite, charcoal, watercolours, pens, moulding pastes, papers, literally anything goes.

Even with my current collection I use both watercolor and pen. And occasionally inks.

I love them all!

What is on your mood board, or in your mind, as you create?

Sometimes a specific song. It can be something I hear on the news. Or something a friend is struggling with. Often it’s just a matter of working from intuition. Just getting it down onto the canvas. Inspiration comes from everywhere. From living. 

Where do you create your artwork? And how do you work? For example, do you enjoy listening to anything as you work, or enjoy watching something? 

I have a studio at home where I create and have several playlists that I rotate. Often when outdoors, near water or in the woods, I bring a small sketchbook, paints and pens and just create small pieces for myself. Outdoors is the only place I don’t have music playing while creating.

How do you want people to feel when they look at your art?

I want them to feel seen and understood. To know that whatever it is that they are not wanting to share due to the fear of being judged is common and not something to be ashamed of.

I’d like to give them a small boost of bravery to help them share their authentic selves.

And for others, who don’t see themselves, I want them to have an Aha! moment. To recognize the fact that mental health is something we need to talk about. To not make shameful. And to realize the magnitude of what judgement does to others.

If you could have a piece of your artwork anywhere in the world, where would it be and why?

Oh goodness! I hadn’t thought of this before. I just want it to be visible to those who need it. Wherever that is.

Routines and rituals for the soul: can you tell us about the others little or big things that keep you feeling enchanted, joyful, connected and inspired?

I meditate a lot. I look at other artists’ work. I walk in nature. I light candles and take bubble baths. I follow a ton of Instagram accounts who are uplifting. I try to live a life of gratitude and look for it even in the most difficult moments. I read statistics on mental health (this keeps me connected, no joy here). 

Georgie xoxo is all about seeking whimsy, enchantment and wonder? How do these things show up for you? 

They show up in nature with the peace of the snow falling, the perfection of flowers and leaves and the sound of the waves rolling in. By appreciating a lot of mermaid, faery and fantasy art. And crystals with the colors, texture and the way they feel in my hands.  

Describe the your art or ethos in 3 words: 

Uplifting, whimsical and thoughtful

Where can we see more of your artwork? (social media, website etc)

www.jennifermazurart.com

www.instagram.com/jennifermazurart

Finally Jennifer, what is your one wish for the world?

To treat each other with compassion and understanding — without judgement.

♥♥♥♥♥♥

A huge thank you to Jennifer for opening up about parts of her journey living with mental illness and sharing such love and light through her methods of healing through art.

The healing power of creating art has long been recognised by artists for centuries from around the world, as evident in the work of Vincent Van Gogh to Edward Munch to Georgia O’Keeffe.

Living with a mental health illness is a long road, and one with many variables and actionable steps. Today, we can start by talking and Jennifer’s work so gently eases us into these conversations.

I’d love to know how Jennifer’s artwork makes you feel? Are there aspects of Jennifer’s story that resonates with you? What do you see when you gaze into her portrait’s eyes?

It’s always such an honour to hold space for you all here. Until then, like every single one of the faces that Jennifer paints, please always remember how special you are, how unique you are, and how much this world needs you just as you are right now.

For my Swedish readers, Jennifer is holding an exhibition of her work in January 2021. To find all the details head here.

Click here to view Jennifer Mazur’s Art

Social Media

Click here to follow Jennifer Mazur’s art on Instagram

Click here to like Jennifer Mazur’s art on Facebook

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Chronic Illness and Mental Health

Chronic Illness and Mental Health

Disclaimer: This post is purely based on my own experiences with chronic illness and mental health. This is not medical advice. I highly recommend the incredible wealth of information at Mind and that if you are suffering from mental health problems you seek help from a trusted resource. You are not alone.

The relationship between chronic illness and mental health

According to Paul Mayberry and a Metro Article on the subject of the relationship between chronic illness and mental health, he states that 49% of those suffering from a chronic illness are also on anti-depressants. This is according to a survey of 1,100 patients who are registered to receive repeat prescriptions.

Meanwhile in the USA, the Cleveland Clinic states that an estimated one-third of individuals with a chronic illness or condition experience symptoms of depression.

Finally, according to the UK Mental Health Charity Mind, approximately 1 in 4 people in the UK will experience a mental health problem each year. Of these, in England, 1 in 6 people report experiencing a common mental health problem such as anxiety and depression in any given week.

This post coincides with Mental Health Awareness Week, so I wanted to take some time this week to sit down and unload some of the heaviness I have experienced surrounding my own mental health with my chronic illnesses.

Every single day, however, should, of course, be dedicated to raising this awareness. There is much work to be done in the world, to help the numerous people experiencing mental health and chronic illness. 

Before I start discussing my experience of chronic illness and mental health I wanted to pause to reflect on the relationship between chronic illness and depression.

First and foremost, serious chronic illness can cause tremendous life changes and limit your mobility and independence.

Secondly, a chronic illness can make it impossible to do the things you might have once enjoyed. Furthermore, chronic illness can isolate you, eat away at your self-confidence and leave you feeling hopeless.

Therefore, it is no surprise that people with chronic illness often feel despair and sadness that leads to mental health illnesses. In some cases, like mine, the physical effects of the condition itself or the side effects of medication lead to depression, too.

Another dimension to chronic illness and mental health can be found in the process of battling for a diagnosis.

I think every undiagnosed, chronically ill person reading this right now will have experienced this or can recall how deeply painful this period of time is.

When you’re chronically ill and undiagnosed, you enter the tortuous world of ‘the waiting game’ that’s, unfortunately, a cycle of endless doctor appointments, misdiagnoses and tentative treatments.

It can be one of the most vulnerable times in your life, and if doctors, friends and family are convincing you, “it’s all in your head” you can start to feel like a stranger in your own body as it transforms beyond your control.

Whilst we navigate these periods, whilst grappling to understand what is happening to us, we can often overlook the symptoms of depression, assuming that feeling depressed is normal for someone struggling with a serious, chronic illness.

Symptoms of depression such as fatigue, poor appetite, reduced concentration, and insomnia are also common features of chronic medical conditions. This makes it difficult to decide if these symptoms are due to depression or to the underlying illness.

I must just state that in all my 10 years of blogging this subject is one I have been hesitant to post about. Not necessarily because of the vulnerability of posting something so deeply personal, but because I have been fearful about striking the right cord between my own experiences and the sensitivity of this subject for others.

However, I believe that erasing the stigma of mental health in our culture begins with sharing our stories and realising that many of us are suffering, and yet we all deeply connected.

Before I discuss my experiences on this topic, I wanted to post a disclaimer that this is entirely my own experience of learning to live with mental health and chronic health.

I hope if you’ve ever struggled with any of the above that the messages in this post can be a comfort to you.

I believe there is power in sharing posts as vulnerable as this in an ability to hopefully touch hearts I will never meet but be united in this. 

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How chronic illness affects my mental health

In an interview with Chase Jarvis, one of my favourite humans and authors of all time Elizabeth Gilbert tells Chase that: “I don’t know if anyone realises what percentage of my life I spend taking care of my mental health. That’s my full-time job. And writing is a hobby I do on the side….and everything that I’ve learnt that has any taste of wisdom and grace is from the front lines of this [points to head].”

After years of exploring herself and trying to understand how her mind works, Elizabeth Gilbert explains to Chase about how she wakes up ready for the battle of the day (even on the way to the interview with him).

As the interview continues, Chase Jarvis asks Elizabeth Gilbert what some of her practises are for managing her mental health.

With exquisite grace and wisdom, Elizabeth shares a multitude of breathtaking practises for managing and caring for her mental health. One of these practises is writing a Love Letter to herself every single day.

Some of her letters are simply her words poured onto the page and other times it forms a dialogue between her and Love.

As Elizabeth Gilbert explains: “What are the words that I’ve always wanted to hear somebody say? Can I say it to myself?”

This universal Love can tell Elizabeth that: “I am company for you in your darkest hours”. She then goes onto say that this simple loving presence is what has saved her.

The reason I am sharing this interview is that Elizabeth Gilbert’s words always makes me reconnect with the deepest parts of myself. And in turn, this helps me understand my own mental health more intimately.

Whilst I have a habit of searching for light, hope and meaning in the things I post here, it would be dishonest to both myself and you, my beautiful readers, to say that the implications of living with various chronic illnesses haven’t affected my mental health over the years.

Like Elizabeth Gilbert, I know so intimately what it is like to suffer from the heaviness of the beast that is depression. Without realising it before I watched the interview with Chase Jarvis, I now understand that like Elizabeth Gilbert, it is also my full-time job managing it.

And just like Elizabeth Gilbert, I try to take this depression, the ‘darkness’ as I call it, and I look to how I can balance and manage the light and dark, in my everyday.

In fact, in many ways, the ‘light’ I often refer to here is actually my ‘whimsy’. And as Elizabeth Gilbert makes a daily practice of writing her Love Letters, my daily practice is searching valiantly for my light and whimsy in every single way I can.

This search for light and whimsy is my daily practice. Because, truthfully, I have really known depression all my life.

From as young I can remember I have been in pain, both intensely physically as well as emotionally. I can still vividly recall experiences of being in and out of hospitals and specialist offices as a child and that has left a huge mark in my heart.

To accept that modern medicine cannot restore you is an ongoing grieving process and one I learnt very early on in childhood.

Moreover, as a very highly sensitive child, and then adult, the world, I learnt very early on, can be a bruising place for someone so deeply emotionally.

Being an idealist in a not so ideal world where there is illness, genocide, poverty, racism, greed, environmental collapse, corruption, lies, destruction, and persecution has always felt so heavy on my heart and soul.

As an idealist, I view the world as having a vast potential for goodness, beauty, and ingenuity and therefore I spent a lot of time in my head disconnecting to the external world around me.

However living in my mind and daydreaming 24/7 leaves me with a lot of time for personal contemplation, and self-reflection. This can be a positive thing: as a dreamer, I am able to translate these visions into my art, to my blog, and to everything else in my life.

Although, a huge part of my mental health problems is that, for me, escaping into a dream world is more preferable than navigating the real world. Simply put: I like my imagined world better than the real one.

I can escape for weeks at a time to pursue this internal world. This, however, leads to shame, alienation and isolation that feels all-consuming when I return to the external world. As I write this, in fact, I’m finding my way back to the external world after weeks of hiding away.

My elaborate inner world is my everything, and many times it is my only thing. It’s an addiction to retreat there. So, just like Elizabeth Gilbert, my daily struggle is how to implement the outside world, and let it into my thoughts and feelings without severely wounding my sensitive heart and my tender imagination. 

Now that’s not to say that being a dreamer makes me depressed per-se, on the contrary, it helps me find a more authentic way of living and relating to the world. It’s naturally healing. For storytelling, art, and feeling. I also helps me process my darkness, conflict, shame, and wounds, to find resolution and to maintain a connection to my own story.

I would never want to try and make this constant search for light and daydreaming in amongst the above to seem shiny and inspirational. On the contrary, the choices and compromises I experience with my chronic illnesses often make me feel resentful and like life is punishing me.

However, as I sail deeper into adulthood and self-honouring, I find myself becoming more and more comfortable with honouring both lightness and whimsy, but also holding space for grief, darkness and the permission to invite reflection due to the effects living with chronic illness has on my mental health.

Tools and resources that help my mental health

The final part of this post is on the subject of chronic illness and mental health where I am sharing a list of tools and resources that allow me to be more connected to myself and the world around me. They nurture both the internal and external balance I seek.

This is a very individual thing, and of course, if you have any symptoms of a mental health illness it is so vital to seek support for your individual needs.

However, I find a very simple question to ask ourselves is: What brings contentment, peace, and beauty to your soul? Because when I am in alignment with my true identity and needs, it allows me to search for the light and hope I seek daily with more ease and flow.

From my own experience of battling with both chronic health and mental illness, an examination of the best tools and resources to experiment with takes an immense amount of compassion, grace and patience.

For some people having a bath with salts and oils might help them become grounded and alleviate some pain for a while. For others, it might be medication and going to see a therapist every week.

Remember that nobody knows your mental health or illness better than you do. It’s important that you do things that feel like they’ll truly benefit you, not just because other people do them.

Here is a list of some of the methods I choose to soothe me and help me deal with chronic illness and mental health:

  • Vulnerability: I’ve battled with the false-belief all my life that the world is not a safe place for my truth and with my illnesses and sensitivities. But as I sail into adulthood I want to reclaim my vulnerability in all ways. As Brene Brown says in her famous TED Talk: “Vulnerability is the birthplace of joy, creativity, belonging and love”. This whole post itself is a huge expression of vulnerability! And vulnerability is scary. But it’s also necessary. I have so much more work to do on this. However by balancing vulnerability and surrender it allows me to be seen, heard and gives me access to help when I need it.
  • Gratitude: To me, gratitude is the true elixir of life. Because through this darkness, it has without a doubt provided a contrast that illuminates the wonderfulness of the gratitude I feel in life to dig deeper into everything I am. I’ve learnt that if I can see the darkness, then it makes the light brighter. Moreover, I feel that gratitude can send a message to the universe. For when I block it, it always comes back to me in deep resentment or feelings of unworthiness.
  • Self-Compassion: Having compassion for ourselves is a medicine to the soul on its own. This is such a huge topic and practising self-compassion comes in endless forms. From saying something nourishing and supportive to ourselves, setting boundaries or simply offering ourselves compassion and support. Or lately, as I am experiencing during a bad flare, it means giving myself mercy for the time I need to rest and stop worrying that I am letting people down in the process. It also means radically accepting the way I am put together; illness and all. And it means loving on myself and trusting my intuition.
  • Letting Go: Letting go is a part of life but with chronic illness and pain that teaching acquires a whole new depth. As heartbreaking as it is, letting go is often the most healing action you can take. Whether that’s letting go of any pain that isn’t your own or letting go of our own pain that keeps us weighted and weary. Moreover, it’s necessary to immediately let go and disengage with things in our external worlds that cause us pain. I talk about this deeply with friendships and relationships in this post here.

When I feel the darkness, or if you prefer to imagine, my shadow, creeping up on me I don’t suppress it like I used to. I accept it, nurture it and then I lean into the above.

As I’m writing this post right now it’s a Sunday afternoon and it’s a day I take a lot of medication for my pituitary tumour. As a result, I always feel low and foggy. Days like this ask me to tend to my most basic needs, slow down, cultivate the art of rest and listen to my intuition.

During the process, of writing this post, when I feel too emotional or feel the dark cloud wash over me, I will pause, save my words and find pleasure. This is often found by nourishing my creativity in some other way.

This includes playing the piano, painting or simply journaling. Any form of creativity is a balm to my soul but of course, it’s important to tune in to what our body is telling us she needs.

You are divinity

Living with a mental health illness is a long road, one with many variables and actionable steps, but we can start by talking and also by taking comfort that we are connected to divinity.

Over the 10 years of the intensity of living with chronic illnesses, I’ve found that there is incredible satisfaction in finding your own euphoria. A force. A divinity.

On a stunning online retreat just last week with Dr Sarah Coxon I learnt deeply about finding our own strength and sense of purpose through divinity.

Connecting to divinity helps me work through the darkness by arriving at a place in my mind that when things get tough, that I am not separate from nature or the Universe. That we are all an expression of Mother Nature herself. That we are all here for a reason and held so deeply.

Through this retreat, Sarah discussed that there was an increasing body of research that suggests that Earth operates as a single living organism. James Lovelock coined this ‘Gaia Theory’.

‘Gaia Theory’ approaches planet Earth as a living system and treats humans as a seamless continuum of that system. The Gaia Paradigm uses the powerful metaphor of ‘Gaia’ to take into account that all human beings are part of a living system.

I feel this connection to the universe and divinity amplified so intensely in my life. For when the darkness creeps in, it illuminates any blessings so vividly for me when I tune in and receive them.

For me, I find divinity in simply being grateful for being able to take a walk after being bed-bound, enjoying food again after a flare of gastroparesis, and so it goes on. These feelings and experiences are euphoric and I am so much more appreciative of them.

In fact, each and every divine thing I get to experience is a treasure to be prized and cherished as the gifts they are. And so, my feelings of thankfulness and delight by simply living and being held by the Universe shine more intensely for me.

As this post comes to an end, I hope there is something in here that comforts you to know you are not alone with both your chronic illness and mental health.

Just one final thing to note is that it also truly goes to show in my case, and for every single person you encounter, to always remember someone is fighting a battle we may not know anything about.

Not everything online will give you an accurate representation of reality. One picture will always tell an incomplete story. One single act of kindness can make this world a much more manageable place.

And just know once more how special, divine, and unique you are always despite living with mental health and chronic. You have no idea how much this world needs you just as you are right now.

Although our journeys may be different, I truly believe that humanity, beauty, and the power in being vulnerable can change the world.

Thank you so very much for taking the time to read this and engage in any way you can. Your love and support is the strength that I use to create impossible things.

“One day you will tell your story of how you overcame what you went through and it will be someone else’s survival guide”

Brene Brown

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Helpful Resources And Rituals For Anxiety with Sophie Laetitia

Helpful Resources And Rituals For Anxiety with Sophie Laetitia

According to the charity Mind, approximately 1 in 4 people in the UK will experience a mental health problem each year, and in England, 1 in 6 people report experiencing a common mental health problem such as anxiety and depression in any given week.

This week is Mental Health Awareness Week, but of course, every single day should be this and thus, there is much work to be done in the world, to help the numerous people experiencing mental health and wellness. 

I believe that erasing the stigma of mental health in our culture begins with sharing our stories and realising that many of us are suffering. So, therefore, I wanted to take some time this week to sit down with beautiful Sophie who writes her blog ‘Sophie Laetitia’ to discuss some of her self-care tips and I hope they encourage and give you the strength to find your own self-care resources for rest and light and healing.

Most importantly, I also hope this series serves as a reminder that you are never ever alone as dark and lonely as it sometimes seems.

A huge thank you to Sophie for her heart and courage in sharing her story. So without further ado, let’s meet Sophie:

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Hi Sophie! Please can you give my readers a quick introduction to you, where you live and what you do?

I own the blog Sophie Laetitia and I’m also a violin teacher! Interestingly I used to be a trainee accountant but decided to change career paths as it never fulfilled me. As Marie Kondo would say, it just didn’t “spark joy”.

I then did some digital marketing internships (including one at the lovely Bloom & Wild) and other volunteering work but I had always taught violin alongside so it just kept coming back to me. I feel now I have a great balance between violin teaching and working on my blog (and I love both).

I got into blogging when I did an internship at Biscuiteers back in 2015. Yes, the amazing biscuit company! I had never heard of blogging before but absolutely loved working on their blog there. I decided to start my own (originally on food) and then I branched out to beauty, fashion and lifestyle. 

I’ve always suffered from anxiety, but it has got worse over the years. I think big life changes like changing careers, moving from quiet Dorset to busy London and growing up as an adult contributed towards this. It got so bad that I had to try things like CBT and coping mechanisms. I found simple tasks like going shopping and meeting my friends for coffee impossible. Some days I just couldn’t leave my home without having a panic attack.

I wanted to help others with similar situations and so I started incorporating anxiety related topics onto my blog such as Anxiety TipsTips For Social Media Anxiety, and Stress & Anxiety.

How have you learnt to juggle running your teaching business alongside a blog and looking after your anxiety, all at the same time?

I set myself goals for my anxiety and I think this is really important as this gives me things to work towards.

Anxiety can be extremely overwhelming and so breaking it up into manageable tasks is the best way. In terms of juggling my violin teaching, blog and anxiety all together, I tend to define my days as much as possible. I have to work with the time I have and so in the time I’m not teaching I have to plan my teaching preparation, blog work and “me time” carefully.

I tend to like routine and so I find making sure I do things on set days helps. For instance, I’ll do scheduling tweets every Tuesday, Blog writing every Wednesday and other admin / teaching preparation on Tuesdays.

I also build in time to take my blog photos and edit them. Sometimes this means doing this at the weekends, but it makes me feel less stressed being organised.

What does a typical day look like to you?

If I’m at home, a typical day always starts with violin practice. Then, I post on Instagram and get the bitty tasks out the way before lunch. I tend to find the afternoons best for focusing on bigger tasks like editing blog photos and writing blog posts.

My day can involve anything from violin practice, emails, taking photos, editing photos, blog writing, teaching planning, scheduling tweets, posting live tweets, posting Instagram photos and stories…. The list is endless!

A typical day for me starts at 9am and then I normally try and finish by 5.30 / 6 to start dinner. Sometimes I do additional work in the evening if I’m feeling extra busy.

When I am teaching, a typical day often means working across lunchtime and either having a meal replacement shake or a really early lunch (at 10am)… the glamorous life ha-ha!

There is also a lot of work involved in teaching that people don’t see: the emails, reports, planning, practising, preparing teaching material etc. so I spend time doing this in addition to the hours giving lessons.

What are your top 3 self-care tips?

1)      Make time for yourself. I work on Saturdays, so I take Mondays off. I love this time to myself and it really helps me as an introvert to regroup and reset.

2)   Eat a healthy diet. I RELY on food to fuel my mind, soul and body. I just feel so much more energised and grounded when I eat yummy nutritious food. It makes me equipped for the day ahead.

3) Sleep is SO important. If we don’t have enough sleep we just can’t be our best selves.

How do you find nutrition and exercise helps your anxiety? Do you follow any other natural remedies you would recommend?

Nutrition and exercise massively affect anxiety. I wouldn’t say I’m that “sporty” but I do go to Pilates each week and do lots of walking. Pilates is essential to me for strengthening my muscles.

Around the time my anxiety was at it’s worst, I was also suffering (and still am) with nerve irritation in my lower back / leg due to stress. I find Pilates makes this more manageable and helps regain my muscle strength that I have lost over the past few years.

Ideally, I’d like to do more exercise though. I’ve heard Naturally Sassy’s Ballet Blast is amazing so I’m tempted to start that when the school teaching term finishes this summer.

Natural remedies I use for coping with stress also include music (all types from calm to mood boosting), sleep, limiting my caffeine intake during the day, not drinking too much alcohol, breathing, meditation, self-care sessions with facemasks and baths, and finding some time to be by myself and quiet.

What’s the most rewarding change you’ve seen in attitudes towards mental health?

Although I still feel there is quite a bit to do in terms of mental health awareness, it is covered slightly more in the news now. People are supporting amazing charities like Mind a lot too. I think people are more open to talking about anxiety and depression these days in general.

What more needs to be done for mental health in the future?

There’s still a stigma about it affecting you as a person and not being able to complete tasks like other people. People are still afraid to tell their work for example as they feel it would reflect on their working achievements. It can isolate you from friendship groups sometimes too and I feel like people need to take it just as seriously as a physical illness. It can affect people in different ways, such as causing health problems due to tensing the muscles and increased heart rate too.

I think more awareness in schools and across social media is the way forward and surrounding yourself with a supportive network is key.   

Who is one of your online inspirations/content creators and why do they inspire you?

Oooh so many but if I had to choose one (in terms of anxiety and wellness), it would have to be Niomi Smart. She just inspires me constantly with her amazing recipes, chats on mental health and fitness routines.

If I’m being sneaky here are two other amazing ladies that you need for inspiration… Venetia Falconer and Naturally Sassy. I think in general I just like to follow entrepreneurs… does this say something about me?

What is one/some of your favourite quote(s) for daily inspiration?

“Never give up on the things that make you smile”

“It’s OK not to be OK, just don’t give up”

“Life is tough but so are you”

“Always find time for the things that make you feel happy to be alive”

“Trust the timing of your life”

What are your favourite things to do in your spare time? 

Obviously, I love to play the violin, but I also love to cook, bake, read books, have some pamper days at home drinking tea and eating chocolate! I also love to watch YouTube videos and I cheekily enjoy watching a bit of Neighbours on TV (anyone else still watch this programme?).

What is one of your favourite projects or blog posts to date?

One of my favourite blog posts has to be my Royal Blues Outfit Post as it was the first blog I made using my new camera (I use an Olympus Pen E-PL8 with a 14-42mm lens). Unusually it was probably the best photos taken on the camera which is weird because it was a new set up. The lighting just seemed to work.

I also love the blog posts “Being an introvert”, “The Ups And Downs From Working From Home”, “Turning Your Home Into A Hotel”, “Anxiety Tips”,  ‘Chewton Glen Treehouse”, “My Evening Routine” and my “Deluxe Granola Recipe”.   

Describe your perfect day: 

I would wake up early (before anyone else would get up) and sit sipping a cup of tea whilst I watched a little YouTube. Then I’d have a yummy breakfast (probably an acai bowl or my fave pain au chocolat with lots of berries….). After getting up I’d spend the morning getting outside on a lovely walk with my boyfriend and we’d go to a cute café or vegan restaurant for lunch. My absolute favourite is Tell Your Friends. After that I would meet some friends for a catch up / shopping trip. Then I’d spend the evening having dinner, wine and chocolate with my boyfriend, watching a cosy film.

Describe yourself in 3 words: 

Imaginative, quiet, and thoughtful. 

♥♥♥♥♥♥

A huge thank you to Sophie once more for opening up about parts of her journey with anxiety and sharing such love and light through her methods of management.

Living with a mental health illness is a long road, one with many variables and actionable steps, but we can start by talking and this is what this new series seeks to do so I really hope to add to this soon with stories from other friends and also myself very soon.

Just know once more how special, how unique and how much this world needs you just as you are right now.

Sophie’s Blog

Just a quick disclaimer that these posts are solely for inspiring wellness based on my/others I interview experiences; this is not medical advice. I so highly recommend the incredible wealth of information at Mind.

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Losing Friends Due To Chronic Illness

Losing Friends Due To Chronic Illness

One day last spring I was sat sipping chamomile tea in a beautiful hotel with one of my dearest friends with the melodic sound of Chopin (requested) deeply vibrating into my soul, the soothing mellow taste of the most exquisite tea, and it was one of the first times for a while I had felt so at peace. During our huge heart to heart, so many deep topics were discussed, but the one that was spoken about at length was loss of relationships, all of kinds, and forgiveness.  

I would describe 2018 as a year of loss in so many ways and I thought it would be an interesting topic to discuss and reflect on.

For there are the predictable losses that one has to come to terms with when you receive a life-changing diagnosis. Be it from the loss of the day to day activities once so easily achieved, to the loss of expectations, hopes and dreams and so it goes on. But the loss of friendships or relationships? Surely that’s the one thing that in the midst of the deep physical and emotional turmoil that would stay a constant? You would naturally assume that friends and relations would draw closer at such deeply vulnerable times, but actually, it can be a time where many drift away instead.

Understanding Chronic Illness 

As my discussion developed with my friend, we discussed the nature of people’s understanding of chronic illness. As a result, I surmised, on thinking and reflecting on the subject this deeply, that I believe it has something to do with the lack of commonly understood rituals for persistent stress or sustained grief.

Though deeply uncomfortable to discuss and think about, from my own experience, humans understand the finality of death better than sustained illness. As S. Kelley Harrell says: “Miraculously recover or die. That’s the extent of our cultural bandwidth for chronic illness.” Because for death there are religious and cultural conventions for observing the passing of loved ones. People attend ceremonies or memorial events, they send cards and flowers, and perhaps even make donations to the person’s favourite charity. 

But the same cannot be said about chronic illness where the “loss” isn’t final and the emotional agony is ongoing. There are no cards that acknowledge when an illness becomes a continual challenge unless of course, it’s for a hospital stay or operation. There are no ceremonies for when that individual’s life is changed immeasurably. We simply have no rituals for the sustained grief that keeps on giving or the agony that becomes a way of life. And this therein I think lies the problems for accepting the loss of friendships or relationships due to chronic illness.

Contrarily, I’m sure equally you do remember only too well an initial period of concern and compassion from many around you. Those that couldn’t do enough for you at first, and that helped, but then this help and support dwindled away. Meanwhile, your anguish and pain went on just the same and you had to cope with it alone.

Distance becomes increasingly more evident and that leads to infrequent visits and messages until it becomes all too apparent that the pain, the shackles of your suffering, has made them too uncomfortable to be present anymore. Because as discussed above, a sustained illness or grief, as perpetuated by our health-adoring, goal obsessed society, doesn’t sit well for many. And so their need to create distance ultimately stems for their own survival and peace. Ultimately: many people cannot deal with this and they don’t want to deal with this. That’s just the truth of it. 

Letting Go & Forgiveness

Growing up I had what I call a “forest of friends”. I always had a huge circle of compassionate friends, sassy friends, good time pals and those that shared my own hobbies and passions. And many of these relationships have been sustained since childhood.  

With my first diagnosis of a Pituitary Tumour at University, many of the “forest of friends” I had were so kind in their support. Because as life-changing as this diagnosis was, it was at least an illness where the main symptoms can be treated enough over time to lead a somewhat ‘normal life’. However since then, what I didn’t realise, was how much this condition would weaken my body over 10 years and lead me to my present-day state.

And over this period of time, I developed my own business, I completed two degrees and I was simply known as ‘Georgie with the one invisible illness’. That was inspirational to many. I had an alluring shiny edge despite my illness. But in February, with my latest diagnosis, everything changed. A diagnosis of one of the most serious autoimmune diseases meant a complete change in every single aspect of my life. Because of this, many fell away almost instantaneously which has been as heartbreaking as the diagnosis itself. 

After months and months of ruminating on this here’s what I truly believe, and this is so, so important to this whole discussion: not everyone who leaves you has a bad heart. They are not all bad people. At all. It’s that simply not everyone has the same heart as you. As a result, not everyone you think will be there for you will be. Even if you have been there for them in their times of need. It’s, unfortunately, that simple.

So much of what we are going through is invisible and the people that leave us at this time might simply not understand. They may not be strong enough to watch you suffer and brave enough to walk that long road with you and willing enough to make sacrifices to support you. And what’s also important to understand is that none of this has anything to do with you. I look in the eyes of my family and best friends and I know so much that to be true. So often they say: ‘I feel so helpless because I hate to see you suffer and there’s nothing I can do to make it better/I don’t know what to do to make you better’. 

On the other hand, it may actually be that they DO understand. Perhaps only too well, but it could be a trigger for something they have either experienced in their own life or witnessed in someone else. Whatever the reasons may be, the only thing that has helped me is to practise forgiveness. Forgive those who do not understand. If for no other reason than you deserve peace. And because resentment and any bitterness will only make you feel physically and emotionally worse.

For as many people as I’ve lost, other relationships I have in my life have deepened in simply unimaginable ways and I have also been blessed by new relationships entering my life with individuals who connect so vibrantly and deeply to my heart and soul. But gone is the “forest of friends” and instead replaced by a blooming garden of truly angelic souls. 

So why is it still so heartbreaking to be forgotten and left by so many others? People who you may have once connected with, loved and helped so deeply. It has taken me months to understand it but now I have accepted it. It’s simply that we cannot expect everyone to meet the new us and to accept the challenges of chronic illness. And with this we simply have to accept that we must let others go.

Letting go is a part of life but with chronic illness and pain that teaching acquires a whole new depth. As heartbreaking as it is, letting go is often the most healing action you can take. Change in itself, chronic illness or not, is inevitable in any case. So just as our lives shift and evolve, we too change and grow, and so must the people we share it with.

Self-Compassion 

The last part to this post I felt was really important to discuss is self-compassion and self-love. Without a doubt, the hardest part about living with a chronic illness, whatever that might be, is feeling like you don’t know yourself anymore, and feeling like a stranger in your own body as it transforms beyond your control. And during a period where your life is changing rapidly, and your relationships are changing too, fundamentally you have to learn to accept your condition and you have to learn to love yourself extra hard. You have to be your own best friend.

Grief and chronic illness, unfortunately, goes hand in hand. Heartbreak comes in many different forms. So instead of focusing on the heartbreak of losing loved-ones to your chronic pain and mystifying illness, trust the process of letting go, and with that have deep self-compassion for yourself, them too in letting go, and know that those meant to be will stay.

Self-compassion is a truly complex subject alone. It’s easy to like ourselves when things are going well in our lives. We feel vibrant, competent, fun, and can see the endless possibilities life has to offer. However when we’re struggling with illness, or experiencing something similar, our self-esteem can plummet. Through this, we may see ourselves as unlovable, isolated and stuck but please know it’s far better to be in the presence of those that deeply love and care for us no matter where we are in life and what is happening, than those who can only love one part. 

I could add so much more to this post but one final point on self-compassion is to know that whilst most will fall away naturally, it’s also okay to outgrow people organically ourselves. We are who we are right now and it’s so important to never shrink ourselves to be accepted. I’ve equally had to end so many friendships where I felt disrespected and small. Or I’ve felt empty in the presence of some and felt isolated and lonely in a crowd. From my own experience dealing with the end of these relationships was more traumatic. 

But no matter how these relationships end, remember that we’re all human and therefore fallible. Letting go of any bitterness and accepting what is has been so liberating. I can think of so many people full of compassion for others who find it hard to turn it back on themselves.  We need to become our own advocate, both to others and to ourselves. You are always, always enough and I’ll finish this post with a quote that stresses just that.

PS: For further reading two posts that helped me so very much other than this discussion with my friend is this article by Chronic Curve and this article by Princess in The Tower.

“Pain diminishes us, and it is so important to remember, in the midst of pain and everything that pain takes from you, that still … you are enough. You are enough just as you are. You are worthy of love and kindness. You are enough. And you have enough.” ― Steve Leder

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