When I found my therapist due to work related stress several years ago, I never thought to disclose my physical condition. At that point I wasn’t diagnosed with anything other than “Hypermobility” with suggestions that it was EDS-Hypermobility. However, no one bothered to formerly diagnose me. I continued seeing my therapist, climbing to the third floor every week up a narrow staircase. I never complained because I didn’t see myself as disabled.
My diagnosis with Fibromyalgia came as a bittersweet relief. I was finally understood by the medical professionals, but there is no cure for fibro, and so I knew I’d be dealing with chronic pain and disability for the rest of my life.
I bit the bullet, and after 18 months, I confided in my therapist about my condition. I won’t go too much into their response, as it was personal to our therapeutic relationship, but they were surprised that I had managed to hide it so successfully. Following a discussion, my therapist suggested that I try to draw or write about what my condition looks like to me – as I really struggled to articulate as a 20-something year old woman that I was disabled.
A lot of the concepts in the image above can be found in my following list of symptoms:
- Widespread pain in every joint of my body
- Spasms and tingling in my joints and extremities
- Sensitivity to touch (causes pain)
- Sensitivities to certain smells and foods which will cause a flare up
- Restless leg syndrome and cramps (particularly at night)
- Painful periods
- Lack of sleep (insomnia)
- Poor circulation
- Unable to regulate body temperature
- Irritability, depression and feeling miserable
- Memory loss and ‘brain fog’
- Cluster Headaches brought on by the above symptoms
The hardest thing about this image was sharing it with my friends and family. I felt that it was important for me to do, so that they understood more about my pain, but at the same time I was scared about the attention it would bring. The attention came, and even now, a few years on, people are hesitant to talk about their own pain because of the problems I have. That’s not why I shared it – and I hope that my friends and family still feel that they can talk to me. It doesn’t matter that I’m in “more pain”, they still have a problem that I want them to feel they can talk to me about.
The hardest thing about this image was sharing it with my friends and family.
This physical pain is one of the most frustrating aspects of my condition. I should be able to walk around and do things. However, if I decide to do something one day, for example, go to town with my partner, I will be laid up for a few days afterwards. I LARP, and after spending a weekend doing this, I end up in bed for at least a week. It feels like my body is punishing me for enjoying myself and trying to socialise.
Not only the pain, but all of the mental anguish causes a series of problems for me. My mental health is certainly massively impacted by my physical health. When my fibro is bad my depression increases. I become anxious because I am depressed and stuck in bed, and then my joints get worse and/or other physical symptoms (such as IBS) kick in. When I have flare-ups my concentration and memory become difficult, the fibro-fog kicks in. The exhaustion causes me to semi-dream conversations so I think I’ve told someone something when I haven’t. I begin to get angry and irritable – which is the opposite of my natural personality. It’s awful.
My condition can be described as a hidden illness, and so it is sometimes easy to hide. It fluctuates and so some days I look fine, another day I’ll be in a wheelchair or can’t even leave bed. I have experienced judgement and stigma from loved ones and strangers. Fibro is hard. The stigma is worse.