Sarah, Solent Mind Director of Quality, shares her story for Disability Pride Month...

When I was first diagnosed with arthritis, I was devastated. I like to be busy and active; I have two kids, a career I love, friends to spend time with, and hobbies ranging from climbing and sailing to building large-scale artwork for festivals. It started out as pain in my wrist, I largely ignored it at first, assuming it was a climbing injury, 

A trip to the doctor followed by blood tests confirmed my worst fears: my psoriasis – which I’d had for 20 years – had developed into psoriatic arthritis. The wrist pain wouldn’t just go away, and I could expect increasing problems with the rest of my joints until it was under control. 

Over the next year, I became heavily disabled. I couldn’t get from sitting to standing without leaning on something – if there wasn’t anything, I’d roll off the chair onto the floor and crawl on my elbows to where I could pull myself up. Filling the kettle was a complex operation; don’t even ask about cooking. 

It took 10 minutes just to turn over and sit up in bed, and another half hour for the painkillers to work so that I could get up. At one point I even got it in my jaw and couldn’t chew my food properly. All these little things we take for granted suddenly became difficult and painful, sometimes impossible. 

The pain was excruciating. In the rheumatology department at the hospital there are drawings from kids with arthritis, one of which shows knives stabbing into every joint – it's just like that. I’d sit in the office with my hand held out to one side, trying to pretend it didn’t belong to me as a way of dissociating from it. None of the painkillers I was given made much difference; a good day was an intense ache, and a bad day was constant razorblades. 

Autoimmune disease also comes with utter exhaustion. Pain is tiring, not being able to sleep because of the pain is tiring, every little action being a military operation is tiring, and, to top it all off, the inflammation itself causes fatigue.

I don’t just mean the tiredness when you’ve had a few busy days, or a couple of nights of insomnia – I mean burnt-out, down-to-the-bones exhaustion. The fatigue affected every area of my life, limiting my work, my hobbies, my social life. As someone who likes to achieve at work and make the most of my leisure time, the constant need to take naps and rest left me feeling like I was failing at life.  

Alongside this, the rheumatology department at the hospital were trying hard to get the arthritis under control. Unfortunately, as it turns out, I’m sensitive to damn near everything. The first drug they tried worked, but a few weeks later caused a severe allergic reaction that nearly landed me in hospital. So the meds were stopped, resulting in a rebound of the arthritis – it was considerably worse than before the treatment. 

The next couple resulted in nausea and mouth ulcers so severe I couldn’t eat, so the drugs were changed again, resulting in another allergic reaction. Each time the pain and mobility would get better, then I’d have a reaction, come off it, and the arthritis would be worse than before I started. Unsurprisingly this added to the hopelessness and exhaustion I was experiencing, and I started to question whether it was worth bothering with life at all.  

I was pretty much ready to give up on the medication rollercoaster but thanks to the determination of my consultant and a lot of support and encouragement from my partner, I was persuaded to keep trying. Eventually – FINALLY – we found one that worked and that I didn’t react to. It only took four years and around a dozen medications! Nearly five years on, I can now do almost everything I could before, and boy am I grateful for it. I will never take my mobility for granted again. 

I started walking daily for the simple reason that I CAN, and have since completed several distance challenges, starting with the Land’s End to John O’Groats virtual challenge during lockdown. I love dinghy sailing (and can actually grip the ropes), I cycle, I make fiddly artwork that my hands previously wouldn’t have managed, I even fulfilled a lifelong dream by doing all the woodwork on a self-build camper. I still sometimes struggle with grip, pinch, weight on my wrists – I need swept-back handlebars on my bike, and can’t make crumble topping (of all things) - and sometimes my feet get sore from walking. But, for the most part, I can do most things I put my mind to. And I now have the energy to pursue my hobbies and career with the passion and determination I’d like. 

It’s been quite a journey to get to where I am now. I don’t think I really understood the impact on my mental health until I was out the other side, but now it’s quite clear just how difficult life was and how grateful I am now to be able to write this without pain, disability or fatigue. Reflecting on this period, I’d say there are a few things that helped me get through the hopelessness that came with the disease: 

• Appreciate the little things. Disability makes the world smaller, so I learned to really notice and enjoy small pleasures in my much-reduced world. Birdsong, the scent of a flower, a good cup of coffee, a postcard from a friend – wherever you can find joy, however small, pay attention. 
• Don’t be afraid to ask for, or accept, help. You’re already dealing with so much; Why make life harder than it needs to be? By 'help' I mean everything from a friend or colleague making that (complicated, for you) cup of tea, through to getting an Occupational Therapy assessment and applying for disability benefits. People often want to help but don’t know how – they'll jump at the chance once you tell them what you need. And professionals are there specifically to help you. My OT fitted handrails in the bathroom and round the bed, which was a gamechanger – no more rolling off the toilet onto the floor so that I could haul myself up with the sink.
• Related to this, ask for the support you need at work. Employers are legally obliged to consider 'reasonable adjustments' - how they can adapt the workplace to make it manageable for you as a disabled person. I need an ergonomic keyboard and vertical mouse, and even now I can’t work full time due to fatigue, so I make sure my manager is aware of what needs to be in place. In previous roles I’ve asked to reduce my hours when things have been difficult. 
• Most of all, be gentle with yourself. If – like me – you're someone who sets yourself high standards, learning to change these is one of the hardest and most important lessons. I started making myself sticker charts, using bright pens and stickers to note down every achievement, however small, and anything good that happened that day. It won’t solve anything, but it can help to fend off the feelings of uselessness and hopelessness. I still maintain this practice today as a way of supporting my mental health. 

If you need advise on talking to employers about reasonable adjustments for both physical pains and the mental health affects, contact our employment team, or the italk employment team.

Does your disability make you feel down, or isolated? We're here to talk about how you feel. Head to our services page and see what support is available to you.