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
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.
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.
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:
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):
- 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.
- 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.
- 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.
- 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.
- 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.
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:
- 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?
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.