Living With Chronic Illness

I work with all kinds of challenges brought to me by clients, but one that is really close to my heart is working with chronic illness. I was diagnosed with fibromyalgia seven years ago, and have since been diagnosed with adenomyosis and endometriosis, which have led to a hysterectomy and surgical menopause at 43 years old. I know what it is like to live with the grief, fear and constant pain and fatigue that these conditions bring and so deeply empathise with people experiencing similar things. The impact is devastating, and hard to come to terms with.

Recently I was given the opportunity to record a podcast with Joe Wicks about my experience of trying to keep fit throughout it all and it forced me to go back to the beginning and examine how I have coped, and sometimes not coped, thrived at times, and been treading water trying not to drown at others.

In the beginning, I remember feeling an intense sense of isolation and loneliness. I had a really strong self-image of myself being fit, healthy, strong and capable. I was the one that solved problems, not the one that caused them. It meant that I struggled to ask for any support at all and not many people really knew how much I was suffering. I couldn’t hide it, I looked unwell, but if anyone asked I would just dismiss it as ‘one of those things’. I didn’t want pity, I didn’t want people to think I couldn’t cope, and I tried to carry on. I was firmly positioned in the drama triangle, my default being the rescuer. (Read more on this at The Drama Triangle - from wounded to winner). I resented friends who I’d been so supportive of who didn’t seem to notice how hard I was finding things, I resented other people being able to carry on and do things I was missing out on, but mostly I was angry at myself for getting ill in the first place, for not paying attention to the warning signs and stopping before it got so bad. There was so much guilt that I couldn’t do things with my children that they’d enjoyed before and I felt I had let them down, as if somehow I had brought this on myself.

I was very fortunate and I have to acknowledge my privilege here: I was very fit, slim and able bodied before, I was extremely lucky that my doctors took me seriously and I didn’t experience too much of the medical gaslighting and fat shaming so many women face, so was diagnosed and given help relatively quickly, and the medications for the most part have worked well for me. I know how lucky that makes me and that not everyone has the same experience. I was also in my training as a therapist, and having my own therapy at the same time, which meant I was working through it all in real time. My tutor had fibro too, and so did my most effective therapist, although I didn’t find that out until years later, so they just got it.

Even with all of that said, I felt like I had lost huge parts of my identity. I had styled myself as this strong, independent woman; the one that was there for all of my friends problems, that knew the answers to everything, that never needed help – I was the helper, not the helpee. I had learnt that to be valued in the world I had to be useful. If I wasn’t those things, who was I and what was my purpose?

Through therapy, I learnt that this was a mask I was wearing to avoid vulnerability. If I didn’t need anyone, I couldn’t be hurt by their rejection. This was what was keeping me trapped in isolation. No one was seeing how much I was struggling because I didn’t want them to. People assumed I was ok and managing because that was what I presented to the world, even as they could see me walking with a crutch at a snail’s pace, or struggling up the stairs at work. I was still ‘ok’. I closed off authentic connection with people in case they rejected me for who I really was: sad, angry, and scared for my future. I didn’t want to be the one that brought everyone down when I’d spent so long trying to hold everyone up.

My therapist was incredible at challenging all of these perceptions I had of myself. She helped me integrate all of these parts and understand that I can be both strong and vulnerable, both the helper and the helpee, and that it doesn’t diminish my value in any way. Expressing those 'negative' feelings didn't feel like a burden with her - she could see right through my defences anyway, so there was no point in hiding behind them. In doing this I began to trust small parts of myself with people I felt I could rely on. Bit by bit, I opened up my self-image to include all the parts I was afraid I would be rejected for. Over time, I built far more meaningful connections. People asked how I was and I answered honestly, and in turn they were honest with me. I heard so many stories of hidden struggles that made me feel less alone and more understood. Yes, I lost some people along the way, but although that was painful, I came to see it as a blessing. It made room for people I felt more aligned with. I was far less judgemental as a result too – I could see that the ‘flaws’ I picked up on in other people were just things I was afraid of being judged for.

In talking with my therapist and then with others, I worked my way through the guilt and grief. I learnt ways to still be of service at the same time as honouring my own needs. I learnt to live more in the moment and notice the times things weren’t so bad so that I could enjoy them more and expand on them, finding joy in moments that would have passed me by in a haze of ‘if I enjoy this now, I’ll suffer for it later’ feelings. Everything passes, good times and bad, so if I can hold it gently and move with it, it’s less frightening when it gets heavy again.

In time, I began to notice my body feeling less painful, or at least, the pain was less all consuming. It was as though releasing all of those pent up emotions stored in my body, slowly allowed me to shift focus onto more than just the pain. I began to think about all the things I could do, even if they felt small compared to before, and stopped dwelling on what I couldn’t. My life began to open back up in ways I hadn’t thought would be allowed for me. I’m not saying it was a cure, I still have bad days, weeks or even months, and the last couple of years have been particularly tough with new conditions to deal with. However, I never lose hope that a better day is coming, and when it does, I grab it with both hands.

Hold On Pain Ends.

Sam x

Listen to the podcast here:

https://open.spotify.com/episode/73SG449pQPY5lLeUTSbWgB?si=8ZbzHehvQYe2ugH9C2kuBw