Philip Aherne was diagnosed with rheumatoid arthritis at the age of 22. Now 29, he talks to PharmaTimes about his life with the condition
What were your initial symptoms?I had a range of symptoms that built up over nearly two years: inflammation in various joints (knees, hips, ankles, spine, elbows, wrists) that were intensely painful and made it difficult to move, insomnia, depression and fatigue are the main ones. The problem is that the disease comes and goes, so it’s difficult to pin it down.
What prompted you to seek medical help?
It was taking me 30 minutes to physically get out of bed, but the final straw was a morning when I could not apply deodorant: I could move my hand across my chest, and I couldn’t press my finger down on the canister’s nozzle.
How long did it take to get a diagnosis?
I went to see my GP and was referred to the hospital; I got an appointment within a couple of weeks I think. I was provisionally diagnosed in the room when the consultant examined me, but was formally told a month later when all the testsresults came through.
How did you cope?
With difficulty: your life immediately changes as the medication provokes the disease and means it is harder to live with. It took six months to stabilise and another two years until I qualified for anti-TNF injections, which made a miraculous difference. But, looking back, I’d say the whole process was about a decade long. It took the heart out of my twenties.
What have you been told about your prognosis?
Now it’s stable it should be all right, but I expect it’ll get me in the end, one way or another. I tend not to think about it too much.
Would you say the condition significantly impacts on your life, and if so how?
You have to reorganise how you live, learn your limitations and build in time for rest and appropriate exercise. Even though the disease is no longer as active as it was, it still governs my life. I still feel uncommonly tired on occasion, am susceptible to bugs that often leave me in bed for a couple of days, have to make time for blood tests and regular appointments. Plus it’s difficult to explain to people. Whenever I start dating a new girl, I wonder when and how I should bring it up. I seem trapped having a conversation I can’t stand over and over again.
What do you find the most difficult aspect of living with rheumatoid arthritis?
Having to describe it to people. Whenever you hear ‘well, I know what arthritis is’ your heart sinks a bit. People’s inability to understand it emphasises your isolation.
Can you describe what it feels like to have a flare up?
You feel washed out and exhausted all the time, unable to settle and concentrate. The pain in the joints feels like a more extreme version of muscle cramp, and is constant like an ache. You just have to sit and suffer through it.
What treatments do you take?
I’m now only on anti-TNF injections, but I’ve been on a lot of DMARDS and NSAIDS. When we were trying to get it under control, I was on ten pills every day, and 20 on Sundays.
Are you happy with the NHS treatment and information you have received? Could any aspect have been improved?
Overall, I have been incredibly satisfied with the treatment I have received, but I wished I was taken aside and given more information about the effects the disease could have on my mental health, as, looking back, that would have made a huge difference.
What advice would you give patients newly diagnosed with rheumatoid arthritis?
Arm yourself with as much information as you can, accept that it has happened and do not waste time worrying about it, build your life around it whilst making time for things you enjoy, and keep a very close eye on your mental health.
What do you feel has been your greatest achievement to date?
I was right at the start of my PhD when I was diagnosed and I kept going with that despite struggling with the disease. Completing that in 2014 was a huge achievement that I still feel quietly proud about.
What is your greatest hope/fear for the future?
Associated health issues: having an autoimmune disease leaves you very vulnerable and defenceless in the face of other infections.