There are emotional benefits to feeling on top of your arthritis admin, discovers Collette McColgan
When you become an adult after being diagnosed with arthritis at a young age, it can be difficult to take charge of something that has been taking charge of you for so long.
I was diagnosed with arthritis when I was three years old, which means I don’t remember life without it; it’s always been something I have to consider. Except for the most part of my life to date, it’s not been me considering it – it’s been my mum and dad.
Around the age of 15, my rheumatologist, physiotherapist, occupational therapist and parents made an effort to prepare me for the real world and dealing with my arthritis myself. However, it wasn’t until I flew the nest and moved to university that I realised just what I was dealing with.
Cue a pretty significant flare-up, which I failed to deal with to the extent that I was unable to go on a year abroad in my second year. It was around this point, when I saw my adult rheumatologist for the first time, that I decided something had to change. I decided to make a real effort to understand my arthritis and finally be in control of it myself.
I started off with simple things like asking more questions at my appointments and doing a little bit of research into the sciencey bit about what causes JIA. I also started a notebook, writing down questions between appointments to ask my doctor or nurse the next time I saw them. I’m a big fan of admin, so I made myself a little box with all my splints and support bandages in, and another for all my letters and blood test forms. I even have a nice flowery tin that I keep all my pills in.
When you’re a grown-up there is no one to remind you to take your medicine or to arrange to get your sharps bin collected – you have to be in control of it all and manage these things yourself. It really makes me feel like I have some element of control over my arthritis.
I’m getting much better at facing up to the things I can and can’t do. A few years ago, it would have pained me to miss out on a party even if that meant not being able to walk the next day. Now I will gladly miss out on something; as I have matured I have really learned the importance of a full night’s sleep. I’m starting to get to know how I feel if I’m going to have a bad spell or a flare-up, and I’m even learning to call the doctor straight away, rather than wait until I am completely unable to walk!
The thing with arthritis is that it is always a learning curve. Not to be completely negative, but I don’t really believe I will ever be in control of it completely. Arthritis can be really difficult to predict, but as time goes on I learn a little more about it.