My experience of living with RA

My name is Johanne, I am 35 years old, and work as a freelance Costume Designer and Maker. I was diagnosed with RA ten years ago, when I was just 25. There have been ups and downs, and lots of necessary adjustments have been made in terms of lifestyle and diet - but I can happily say that I am able to lead an active and fulfilling life now.

I think the key to living with RA is finding the right balance: it’s all about using your “spoons” wisely (some of you, I am sure, will be familiar with the term “spoonie”!) and not be afraid to be selfish at times, even though it may feel like you are letting people down, or putting yourself first. Challenging perceptions is also a big one: RA is an invisible illness, so if you happen to be not too shabby looking and young like I am, eyebrows will often rise quizzically if you choose to turn down an invitation, don’t drink or party as much as your friends do, or need to take the lift rather than the stairs because your right knee is playing up (or left knee, or right ankle, or whichever joint has decided to give you grief on that given day!). I do think, however, that it is crucial to educate people who don’t know about RA or chronic illness, as ignorance just leads to fear and misperception - until these are challenged.

The toughest time of my life with RA came about earlier in 2017. About one year ago, I stopped taking methotrexate and decided I would try to go the natural route. I was fine for the first couple of months and was so happy to finally be able to “feel” my body again, and not be in the constant mind fog and cold I seemed to suffer from on methotrexate. A few months later, I suffered symptoms even worse than when I was first diagnosed, and as a result I had to stop working altogether! To add insult to injury, my dad passed away, which added immense emotional distress and made me feel more lethargic and depressed than normal. At home most of the time, on benefits as my only source of income, and suffering so much from extreme stiffness and pain that would wake me up at night that not even the strongest doses of co-codamol and ibuprofen could calm down, I finally decided to go back to traditional medicine. This time on methotrexate injections, in combination with hydroxychloroquine and natural remedies such as echinacea and multivitamin tablets, I am active again, tougher and a lot happier. I have almost entirely regained the grip in my hands, morning stiffness has practically disappeared, and flare-ups are much fewer and far between and a lot easier to manage. 

I think the biggest change has been realising that it’s ok to ask for help, especially when it comes to manageable symptoms like pain, inflammation and depression. Exercise, although it might seem counterintuitive and can be hard to get into when you are in pain but really helps to make you feel more energised as well as keeps inflammation in check and joints lubricated. Keeping a regular meditation practice has also worked wonders, as it helped me to create mental images and positive thoughts that are now second nature. I visualise my pain as a long-haired Daenerys-type warrior queen that I call Pandora, and when it gets intense, I challenge her to a fight - and I always win, of course. Finally, last but not least, joining a gospel choir a few months ago (London International Gospel Choir) was absolutely instrumental in helping me to heal physically and mentally. 

One thing I can say for sure is that RA has moulded me into an incredibly resilient warrior, with a very high threshold for pain, and a very low tolerance for “b..ll..it” (excuse my French!). It is hard enough for a healthy person to successfully navigate life in a crowded, noisy, polluted and hectic sprawling metropolis like London, but when you manage it with chronic (and sometimes incredibly debilitating and mind-numbing) pain, side effects from medication, multiple food intolerances, a weakened immune system topped off with chronic fatigue which affects your whole body, it makes me feel pretty bad-ass!

If you’re interested in Johanne’s costume work take a look at her website https://johannebertaux.wixsite.com/jbscostume

You can find out more about the choir she talke about at http://internationalgospelchoir.uk/