CW – This is my own experience and talks about instances of pain and not being heard by medical professionals.
I’ve recently been shortlisted by Unlimited to apply for funding to make some work about my diagnosis with Crohn’s Disease. Diagnosis is something I get asked about a lot by people who are looking for advice for themselves or friends/family who are looking for answers. What signs? What did you do? Who did you see? It’s a tough process. If you feel as though something is wrong in your body, it’s hard to know where to start and, how to make diagnosis quicker to get access to the right medication and guidance. There’s a lot of doubt on that journey too and a lot of self advocacy. It’s a tiring and stressful process to undertake – especially when your body is giving you a hard time.
Like a lot of people with chronic illnesses it took a long time to get diagnosed. My own diagnosis took place when I was hospitalised and, by that point I was so ill. I was so ill that they had to treat an awful infection before they could even start investigating what had caused it. In the weeks before this, I was back and forth from the doctors, walk ins and A & E. It felt like luck that the last doctor I saw had personal experience of Crohn’s and recognised that I was as ill as I was saying. I left his office, went straight to the hospital and was there for eleven nights. My experience isn’t unusual either. Seven years on I can feel that panic in the pit of my stomach still. My body was telling me something was horribly wrong and nobody else could see it.
From the age of 23-28 I was on regular treatments that kept my condition in check and now, I am in remission. This means I don’t take any medication or, have the symptoms of active Crohn’s Disease. Although that doesn’t mean that it has gone away, it’s something to be mindful of and be ready to plan around in case those symptoms start to reappear.
For this work, I’ve started to think again about those early stages after diagnosis. Relearning my body, being so sick, feeling fragile, sleeping a lot, managing medication side effects and appointments. Recovering to a point of functioning took time. Coming to terms with a life long condition at 23 years old took a long time. You have to be prepared to share your body in a way that becomes the norm. There’s nothing that really prepares you for that.
So, thinking of diagnosis, of my experience, of the journeys people are on to get their diagnosis. What can this do to help? What can my experience tell people?
Each diagnosis is different in lots of ways. It can differ in how and when it starts. Who we are, what means we have access to, our support networks and our living situations. Is it something that a family member already has? Is it something we’ve never heard of? Is it something we have studied and in our bones, we know that that is what’s wrong?
I hope that by making some artwork focussed on the time before, during and after diagnosis that there will be aspects that others seeking their own support will recognise. I hope that it will be validating and offer some solidarity. I hope support networks might read it and help their friends along on that journey. I hope medical professionals might see it and help make changes to these experiences.
There’s a lot to think about with diagnosis. There are long wait times and, it is emotional and hard work. Starting Drawn Poorly definitely came out diagnosis. Being half in the world as it had been before but, also engulfed by a bubble that no one around could see through my eyes. I wanted to create a space where we could feel seen and safe and connect with others. There have been so many experiences shared by people through the project and it is through multiple representations that we feel that connection and gain understanding of the broad experience of what it’s like to live with a long term condition and/or disability. It’s important to point out too that for many people, diagnosis never happens and, that whether diagnosed or not, it’s just as important.
Today I am thinking about the application and revisiting my camera roll from 2014, the changes in photos and the documentation of life with a body that felt alien to me. It’s now part of my identity, something I hope I can share to help other people.
How can we support people who are on the path to diagnosis? If you’d like to chat about this work, it would be great to hear from you!