Ruth was in her thirties when she had to give up a senior management role in the NHS due to her complex set of conditions associated with scleroderma that left her without stamina and energy.
It's tough living with multiple autoimmune conditions at a young age and in the prime of my career. I find myself mourning my old body and my old life – the days when I could just get up from bed, go up and down the stairs without being breathless
Ruth has multiple autoimmune conditions and has been diagnosed with scleroderma, polymyositis, Raynaud’s and interstitial lung disease, anaemia, pulmonary hypertension and heart failure. It took nine months to be diagnosed. Chronic pain is a daily reality for Ruth. Simple everyday tasks make her tired very quickly.
Scleroderma has affected Ruth’s heart muscles and lungs so she experiences breathlessness and chest pains. She has skin tightness and dryness which can hurt like paper cuts, whilst her whole body often aches.
She tries to manage the use of her hands so they don’t get too tired during the day as they might wear out enough that going to the toilet can be challenging. If she buys a drink at a shop she has to ask the shop assistant to open it and if she tried to do it herself she would be in a lot of pain.
It feels like the carpet was whipped up from under my feet. As someone who looks physically okay, it’s really difficult for people to understand the pain and the daily struggles I face doing simple things, like getting out of bed. The hardest thing was having to give up my job. That really impacted me mentally, financially, and physically. Managing my condition is a continuous journey, but combining different approaches and having a supportive healthcare team makes it manageable.