My story of living with rheumatoid arthritis

Aoife McCoy at RA launch

In September 2006, I had just celebrated my 18th birthday when I first started to experience the symptoms of rheumatoid arthritis.

What this means is that my own body is attacking itself, resulting in painful, swollen joints. It affects every single joint in my body – from my jaw down to my baby toe. It makes it extremely difficult and painful to move even an inch, let alone walk and do daily activities. It also makes my joints look extremely deformed from all of the swelling.

I’m not the youngest person to have rheumatoid arthritis by far; however, people do see arthritis as an older person’s problem. I had just started my first year of college. I was admitted into hospital due to the pain that I was in. They couldn’t understand what was wrong with me. I was given drugs to ease the symptoms and sent home after a few weeks. I was referred to specialists who did many tests and procedures to find out what was wrong. They could tell me that I had an autoimmune illness, but not which one. This was because the standard test for rheumatoid arthritis was negative. Nowadays, this test plays just one part in diagnosing a patient with RA, but back then it was a very black and white process. It wasn’t until a few years later that I was finally given the diagnosis of rheumatoid arthritis.

Due to the severity of the symptoms of my rheumatoid arthritis such as painful, swollen joints and a never-ending fatigue, I missed out a lot of my first year of college. I had to repeat many exams and didn’t do as well as I wanted to.

The stress of managing my new condition alongside the pressures of college life eventually took its toll on me. By the end of the second year I was burned out, both mentally and physically. I had numerous admissions to hospital and my course work was paying the price. It was then that I took the decision to leave college. There wasn’t much known then about the help that could be offered to students with disabilities. Also, I don’t think at that point I would have allowed myself to be called a ‘person with a disability’.

At this point I noticed the effect that having a chronic illness had on my relationships with friends and family. People found it hard to understand that I was in pain all of the time. They couldn’t understand how I was still tired after a full night’s sleep. As a young woman in her early 20s, I couldn’t go out with my friends every weekend. I couldn’t spend hours dancing in heels, no matter how much I wanted to. Friends started drifting away, and even family to a certain extent.

This had a huge impact on my mental health and I began feeling very down. We spend so many hours and days on our own, in pain and tired that we lose sight of who we really are. We become a list of symptoms, medication rituals and Epsom salt baths that that’s all we are anymore. We either are abandoned by friends and family who don’t understand and don’t want to say the wrong thing, or we hide ourselves away, not wanting to show our true selves.

Finding the right medication is vital for dealing with RA. However this can be very difficult. I became so down and discouraged because the arthritis didn’t seem to be easing. It was as bad as ever. So I stopped taking my medication. I felt that it wasn’t working but was just making me feel worse. I soon copped on to myself and went back on my medication but because of this I have some irreversible damage. The medication might not make the arthritis better, but stopping it will definitely make it worse.

I took some time off to de-stress and then started courses in my local area. This was much easier on me, as I did not have to travel. It also helped that I had started a Living Well with Arthritis course run by Arthritis Ireland, which helped me to come to terms with my illness. I was much more open with people about how I was feeling and more realistic with my day-to-day expectations. The course taught me invaluable lessons that I still use today. The group sessions ran once a week for a couple of hours, so not too strenuous. I learned that I was not alone in how I was feeling, both physically and mentally. I met people going through the same things as me, who I’m still friends with today. I learned coping mechanisms and how to get the most out of my rheumatology appointments. It also taught me the most important tool in dealing with my arthritis: acceptance.

It’s been very difficult to come to terms with my arthritis, but now that I have it has made a huge difference to me. I still probably have more bad days than good; but it has taught me to really appreciate the good ones when they come. I’ve gained a new and improved outlook on life and I am far more compassionate and caring.

I started a full-time sales job which was perfect for me at the time. It was in my hometown of Mullingar, so didn’t involve any travel and it was a desk job, so wasn’t too physically demanding. This worked out for a year or two, but again I burned myself out. I ended up having to be hospitalised and out of work for many weeks. Even after learning all of the techniques, I hadn’t listened to my body when it was telling me it was under too much pressure. Anyone with a chronic illness will tell you the devastating impact that stress can have on your illness.

I now have a part-time office job which I love. My quality of life has improved drastically, and I don’t have the stress of a 39-hour week. I’ve been open with my boss and work colleagues about my illness and have been able to make changes to my desk area that have helped me greatly. I had my desk ergonomically corrected and have a plug-in radiator as I’m always cold! I applied for the disability allowance which subsidises my wages, and this helps me not worry too much about finances.

Through counselling and working with Arthritis Ireland, I learned that closing myself off to friends and relationships wouldn’t help me in the long run. I learned to let certain people in and to let them help me. I now have a great relationship with my mam, some close friends and my husband. When I’m in a flare I can be very dependent on my husband and mam in particular, but they are amazing people and very selfless.

It can be very hard having to be dependent on people for everyday needs that everyone takes for granted. Things like getting dressed, brushing your hair and even eating become painful ordeals. I try to remind the people who help me that I appreciate them as much as I can and make sure that we don’t have a carer type of relationship, especially with my husband. This can be hard work, but I think it’s so important.

Finding the right medication is vital for dealing with RA. It took a long time to get the right combination for me, but now that they have, I just don’t know myself. I still get days of severe pain, swelling sometimes and am not able to do a lot without fatigue, but I’m so different to what I was a few years ago that I don’t even recognise myself sometimes.

Another thing that has really helped me over the years is helping other people. There’s not much I could do for myself when I was in a lot of pain, but I found that even the smallest bit of volunteer work had a huge impact on my self-worth. It makes you feel good about yourself, shows that you’re not incapable and realistically shows you that there are people worse off than you, which is really important to keep sight of.

I am now about to embark on a whole new chapter of my life, and one that I wasn’t sure I’d ever get to. I’m about to become a mother. It’s been a long and stressful journey to become pregnant – between having to plan to come off some medication to planning when I was most fertile; so it took us a few years to get to this point. However, I am having a typically ‘normal’ pregnancy so far and am so grateful for every week that passes and every kick I feel. I am considered high risk and attend the consultants in my local hospital but so far everything has been right on track.

 

Aoife McCoy’s blog is part of the Living with Rheumatoid Arthritis campaign, which is supported by MSD Ireland.