Most people can’t tell but my body hides a secret. Sometimes people might look askance as I wriggle in my seat after only a few minutes or stand to stretch in the middle of a meeting. Those closer to me might notice me cancelling plans at short notice, or avoiding certain activities. They may even notice that I book extra leave after a holiday to recover from it.
Over 11 years ago, after years of problems with my back I was diagnosed with Psoriatic Arthritis (PSA). This is an auto-immune condition which gives the lucky owner the skin disease psoriasis and also inflammatory arthritis.
Like many conditions PSA manifests in different ways for different people and no two PSA owners will have the same experience. I choose to refer to “owning” my condition and the disability it causes because it makes me feel better – if I own it then I’m in charge, not the disease. That’s how I like to look at it and I know that others might not agree. I am fully committed to the social model of disability which would give the perspective that society’s expectations and construct disable me but I cannot get away from the fact that I own a condition which creates a different set of challenges for me.
PSA can attack different joints and different parts of the joints. In my case all of my joints are affected, thankfully not always all at once. The disease follows a pattern of flaring and subsiding, or being more active or less active.
My spine was the first joint affected which caused significant pain and mobility problems. Over time all of my joints joined in, even ones I never realised existed like joints in my skull, my ears and in between my ribs.
As I navigated the process of trying treatments my world began to get smaller. I carried on working (with a few periods of sick leave when flares left me unable to do anything or toxic treatments left me susceptible to awful infection) but other activities had to give way to allow this.
Over a period of years I tried every treatment offered, even participating in drug trials but no drug can cure an auto-immune disease – yet. Instead I have learned to live with PSA, making sure that I can do the things that I want to do, even if I can’t always do everything.
Living with constant pain and limits to my mobility can be tough. I have had to adjust my approach to almost everything. I am grateful to be able to continue working but I have had to make changes to allow me to do this.
I use Assistive Technology to reduce the amount of typing I do and I have a specific chair set up to ensure I sit properly with plenty of support. The usual rhythm of probation work helps me because getting up and seeing clients allows me to stretch and move about. Staying still for too long leaves me stiff and in pain, on the other hand walking too much and repetitive movements are also painful, it’s all a balancing act.
Carrying things can be very difficult, as it places additional pressure on my joints. Driving hours to get to prisons can be tough so I have to build in rest to allow me to recover. My Napo role is different every day. All day meetings can be tough, hence the wriggling in my chair and getting up to stretch. Travelling all over the country is exciting and interesting but can be tough on my body so I plan in more restful days in between trips to recover.
I still manage to exercise and live my life outside of work but I have to take care to plan in rests and prioritise activities. Being in pain uses lots of energy and fatigue goes hand in hand with auto-immune disease (think of the heavy, exhausted feeling you get when ill in bed with flu).
Sometimes I get it wrong and have to cancel plans at short notice when I realise I’ve used up all of my energy for the week. I worry that this lets people down but my closest friends and family understand.
Christine Miserandino wrote about having a chronic illness and came up with a theory to explain the limits on energy that go along with it. She calls it the spoon theory. I recommend you search online for it if you want to understand the impact of chronic illness, or why the person close to you with a similar condition can’t always keep to the plans you make with them.
Living with a hidden disability can be frustrating. Some people say “but you don’t look ill” and I thank them for that, I work hard to keep as healthy as possible! Accepting that your life has changed is difficult, some describe it as similar to grieving for the loss of the life you thought you would have. Other people’s reactions can make this harder.
Sometimes the fact that someone close to me has forgotten about my limitations is nice, it can feel like a compliment, but other times it makes things so much tougher. I try not to dwell on the things I can’t do and over time I’ve tried to break the habit of complaining or even talking much about limitations as it makes me feel worse. This means that sometimes people do forget, or simply don’t know and that can lead to awkward situations.
Embarrassment can lead to me pushing myself too far, and paying for it later. It is also awkward when people make assumptions. They may know someone with a type of arthritis and begin to offer all sorts of advice about treatments and lifestyle changes. Some people even try to tell me what I can/can’t or should/shouldn’t do. I am happy to answer questions about my condition and how I manage it, but often hold back as I don’t want to have to correct well-meaning but misplaced advice.
Luckily I have some fabulous friends, family and colleagues who are supportive and always ready to cheer me up when I need it. Laughter and the odd dose of gin and tonic really help me to feel better after a tough day!