The Secret of Chronic Illness

Copyright Jamie Weisman.

My sister sent me this quote a few months ago as she thought it was apt for me and what I’ve been through in recent years. I related to it the instant I read it. This is exactly what it’s like. It was comforting to read someone else’s words express so succinctly what, until that moment, I hadn’t quite been able to put my finger on.

Before I was ill, I ‘catastrophised’ and worried about EVERYTHING. With hindsight I can see that fear played a pretty large role in my life. If someone had told me 5 years ago that my life was going to be turned upside down by a chronic illness I would have been terrified. If I had been told that I would end up having to stop work and give up my career and wind up living back with my parents, away from my boyfriend and friends, too ill to go out other than for a short walk or in a wheelchair, too ill to wash and dry my own hair or to listen to the radio or cook or do any of the other things I love, I would have been petrified.

But somehow when all of these, horrible and unwanted, things did happen, I survived. I fought and, touch wood, I have managed to claw myself out the other side. If someone had told me that I would manage, for the most part, to live through all of this, with a smile and a positive attitude, I would have laughed in their face! Having a chronic illness has made me much more positive. That’s not to say I no longer worry, I still do. But it’s less catastrophic! I guess once the worst has happened – losing control of your health – you have no reason not to be positive. You’ve hit rock bottom. The only way is up.

That’s not to say that I wasn’t scared. I was. I was absolutely terrified. At the beginning I was bewildered and so very very scared. I had no idea what was wrong with me. My parents didn’t know. My Doctor didn’t know. And the unknown is utterly terrifying. As time passed I was so frightened that I was never going to get better. And as I did make baby steps of progress, the fear, that I would go backwards and get even sicker, grew stronger. But I learnt to balance the fear with the need to keep on living. I channeled my energy, what little I had, into living.

Amazingly, I managed to keep smiling. And despite my life being so different to where I thought I would be age 30 (high flying corporate lawyer living a busy London life), I am now, oddly, grateful for my illness. I am a very different person, a better person I would say, because of the enforced pause my life has taken due to my chronic illness. That is not to say that I don’t miss my old life and the old me. I do. Or rather I did.

All those sayings are true: ‘when life gives you lemons, make lemonade’, ‘learn to dance in the rain’, ‘I’m not afraid of storms for I am learning how to sail my ship’. This is not a rose tinted glasses moment. Clinging onto a positive outlook, and listening to empowering quotes such as these, helped save me.

In the quote above, Jamie Weisman says it exactly right. You learn to live with the fear. When the worst happens you do adapt and you do carry on with life. You have to, otherwise you’ve let your illness win. And that was something I was very determined never, ever, to let happen. You do compromise and you do have to accept losses. You have to grieve for the life you used to have. But ultimately you keep on living.

No person’s personality and situation is exactly the same as another’s, and so it follows that each person’s experience of chronic ill health is different. There is no one size fits all. That’s what makes recovery so challenging.

But if you can manage to let in a little of the secret, your struggle will become ever so slightly easier. No one’s saying it’ll be easy. But, as someone who has been there, trust me, it’s very worth it.