This is a story about friendship when chronically ill and how important it is. It’s also a thank you to a couple of amazing ladies who have supported and inspired me, one an old friend and one new.
Being chronically ill can be the most lonely feeling in the world, especially if you don’t have any emotional support. Even your best friends can never really understand what it is like to suffer from a life changing illness even though they genuinely care and are sympathetic. That’s why I’ve come to realise that it’s important to have friends who are in a similar situation to yourself and who can really empathise with what you’re going through. That wasn’t always the case for me though. For a long time I shunned speaking to anyone about how I was (or wasn’t) dealing with my illness.
After being diagnosed in October 2020, the only NHS support was an eight part weekly course over Zoom (video call) in the spring of 2021 with two other sufferers of chronic barry. Sorry, I mean two other bazzers. Must remember our new collective noun. The hour’s session was fairly basic and covered a different aspect of having chronic barry each week – diet, sleep, meditation etc. After the course finished we had a single one on one follow up over Zoom a few weeks later then we were discharged and that was it. Our professional support was over forever. Nothing else exists. We were on our own and when we were discharged it felt like we’d been kicked out into the street and abandoned. To be fair, what else could they say or do that the brief course didn’t cover?
I set up a WhatsApp group with the two ladies who were on the course with me, which I named ‘M.E. M.E. M.E!’ (I’m quite pleased with that if I’m honest!) We spoke a fair amount initially but over the weeks it petered out. One of the ladies was a young single mum of two children who was obviously overwhelmed and unable to cope. It was heartbreaking to be honest. After a few weeks she left the group. Maybe that was a clear statement but I still feel sorry that I didn’t message her to see if she was OK. In my defence I was struggling myself and I really hope she found some help and support. The other lady had been a bazzer longer than us, several years, and managed her symptoms well enough to be able to work from home in her existing job. But our messages soon tailed off, on my part for no other reason than I didn’t really know what to say.
I joined a Facebook group but most of the people posting there had symptoms far worse than my own (many of them had fibromyalgia, a similar illness to chronic barry but generally more painful) and it was depressing reading other people’s problems – people I didn’t even know- when I had enough to deal with myself. And what could anyone say? I have an illness with no cure, what was there to talk about? Paradoxically I felt very alone but at the same time didn’t want to read or speak to anyone about my illness.
And that may have been the last time I engaged with another bazzer until very recently if it hadn’t been for one person. I’d known Ginny for a long time. We used to go out when I first moved to Brighton in 2000 and had some great times full of seriously hard partying but the relationship came to a natural end after a couple of years. We kept in touch as Facebook friends but weren’t really in contact with each other.
But after I became ill we started chatting again. Ginny is a brilliant yoga teacher and kindly sent me links to some of her own videos and others showing some light moves which wouldn’t stress my body too much. What I didn’t know at the time was that she had been suffering her own ongoing health problems long before I became ill but it was only after my diagnosis that she was finally diagnosed with chronic barry herself.
Ginny would actually like to tell her story in her own words in a future blog post here which I think is amazing and I’m very much looking forward to reading it. It’s an emotional tale of stressful events being the catalyst for becoming ill, misdiagnosis and the daily struggle with pain and stress due to a life changing illness. A story familiar to many of us.
What it meant though was that I now had a good friend who also had chronic barry. From the start Ginny’s attitude was the opposite of mine. Reading up about her illness and trying to take any vitamins or supplements that might help how she felt on a daily basis, rather than as a cure. Pacing properly and taking regular rests. Less screen time. Trying to do the right thing in general. She sent me articles and tips she’d read, for example that it really helps bazzers if they can be creative because even when chronic barry has taken away everything else we still have our creativity and a way to express ourselves. I’m glad I’ve finally taken her advice and started writing- better late than never. Ginny herself is a very talented artist and her drawings are absolutely amazing as you can see below.
Unfortunately her symptoms are a lot worse than my own. Whereas I’m generally housebound she is often bedbound. Yet her spirit and attitude are amazing and she’s always been there as someone I can confide in when I’ve thought no one else would understand and whose counsel is always wise. And since writing my blog she has been my biggest cheerleader. I really couldn’t wish for a better friend. A proper top class bazzer. The type of bazzer who gives bazzers a good name. I am looking forward to reading her account of her own unwanted journey with chronic barry.
My point is that without a friendship like hers over the past four years I imagine I would have deteriorated mentally a lot quicker than I did. It’s important to have friends who understand and can empathise and I now realise that I was wrong about not wanting to hear what people I don’t know have to say. It’s cheesy but true to say that strangers are only friends that you haven’t yet met. I just don’t think I was ready back then and to be fair connecting with anyone can feel overwhelming when you’re feeling fatigued, rotten and full of brain fog. Deciding to write a blog feels like I was telling the world I was ready to engage again.
And then a couple of weeks ago, by coincidence just a couple of days after publishing my first blog post I met another fellow bazzer who I would also like to tell you about. I don’t know if I believe in fate but it’s certainly uncanny that at exactly the same time that I finally decided to make my illness heard I met someone else in a similar situation, not least because over the last four years I’ve hardly seen my own friends let alone had the opportunity to make any more.
I’m lucky to have been in Portugal, a welcome break in the sun from the perpetually grey English weather. While I was over there I saw a post in the local Facebook group asking if anyone locally suffered from chronic illness and would like to meet up or form a support group. A few months ago I probably wouldn’t have responded but to my own surprise I did so spontaneously. After a couple of messages I arranged to meet Anja, a German lady now living in Portugal. But four years of feeling isolated and with shattered self-esteem meant I felt quite anxious beforehand. Would we feel comfortable with each other? What would we talk about? Would it be awkward?
Well, I had nothing to worry about. We spent three hours chatting at a cafe in the sun which simply flew by. Anja suffers from chronic barry and a thyroid illness called Hashimoto’s which causes her a lot of pain and anxiety. We have a lot in common with our illnesses and I found her really easy to speak to. I learnt that she’s a talented artist, blogger, performer and life coach whose mission by another real coincidence is to help and encourage others to express themselves creatively and become more visible. I literally couldn’t have met her at a better time, just as I had started writing my blog. Truly serendipity in action. Chronic barry works in mysterious ways…
Anja was kind enough to promote my blog on her YouTube channel and make this brilliant reel below which perfectly encapsulates what it feels like to be chronically ill. I’m very honoured that she took the initial words from my first blog post and brought them to life so well.
I recommend checking out Anja’s website. She’s very talented and I particularly like her performance videos which are very artistic, surreal and funny with a wonderfully melancholic air.
Both Ginny and Anja have inspired me to keep writing and I’m very grateful to them both. Without their support and encouragement my first blog post may well have been my last, just a cry for help which may have been lost in space. I am humbled to know such amazing and talented ladies. It’s wonderful to have good friends who are in a similar position to one’s self and exciting to make new ones, especially after being shut away for so long. It makes me feel like I’m still part of the world after all and I’d like that feeling to continue.
Four years ago I was forced to retreat from the world physically and shrank into myself mentally too. Until recently it seemed an impossibly long way back. One day I’ll tell you about my personality type which compounded that feeling of isolation but thanks to some amazing people I hope that I can now face my life with chronic barry with renewed optimism. Don’t get me wrong, every day is still a struggle but I’ve learnt that I’m not alone and that’s my mission now, to let others in a similar situation know that they too have people who want to connect with them and help them deal with the cruelty of chronic illness.
I hope this blog and our Facebook group can encourage others not only to share their own experiences of being unwell but also take on Anja’s mission and share their own creativity in whatever form it may take. If you’re in the Facebook group I’d love to see your own creations that help soothe your mental health whether they’re artwork, blogging, music or something else. If you’re not on Facebook please feel free to contact me via email with your creations and I’d be happy to include them in this blog. For me, writing is the lifeline I needed, telling the world I’m still here and making me realise I can help other people. Chronic barry may have taken away our lives but the bastard needn’t take away our spirit. With the help of our friends we can feel that life is still worth living and as Anja rightly told me, good friends are precious.
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Take care of yourselves and always remember that you’re not alone ❤️
Chronic Barry 