Your Illness, Your Journey, Your Life

Being diagnosed with an illness is hard, it is the unknown. You go from being healthy to labelled overnight. Okay, so it isn’t exactly overnight. You often live with symptoms for a long time before formal diagnosis, years for some people. Rheumatoid Arthritis and other autoimmune illnesses are often misdiagnosed or dismissed in the early stages.

When you do finally get a diagnosis, for me at least it was a mixture of emotions. Part of me was relieved to finally have an explanation for my symptoms, another part was hopeful for a treatment to ease my pain and give me my life back and the other part was daunted by now having a label and starting on a new journey, a journey as someone living with a chronic illness.

I was ‘lucky’ in some ways when I was diagnosed with RA because I had juvenile arthritis and uveitis (inflammation of the eye) at the age of 5 and my Mum has RA, so I had a level of understanding of the condition and treatment. The uveitis has been continuous and I have taken eye drops for 24 years but the JA went into remission in early childhood. I didn’t have any joint problems until the subsequent development of RA in my early 20’s. So I guess I was aware of arthritis and had a level of understanding which helped in the early days.

Having said this, despite my understanding of the condition and my second hand experience of living with RA (from seeing my Mum live with it), I still didn’t know how to live with a chronic illness.

In the beginning, I was heavily led by my consultant and doctors, particularly in relation to treatment. As a general rule, I listened to what they had to say, took what medication I was advised to, and that was about it.

This approach didn’t and still doesn’t work for me, not necessarily in the physical, disease management sense but in the living my life with a chronic illness sense.

When you live with a chronic condition there are a lot of people with opinions or views on how you should live your life. Infact I’m sure this isn’t only true for those of us living with illness, in life in general we are bombarded with ideas of what is expected of us, by societal norms.

Speaking from the illness perspective, I have had people tell me things like, I should take it easy because I’m ill, don’t push yourself too hard or it could be worse and should you be doing that? There has never been a shortage of advice and opinions.

More recently and since I have started looking more into my condition and alternative ways of managing my RA I have found that although as a whole the internet, forums, my consultants and my support network have been helpful, you can, without necessarily realising it, start living their life and not yours.

You read one article that states someone has cured themselves from eating purely plant-based and you must therefore do the same, turmeric is gold (literally) so take it everyday. On the other hand your consultants rubbish the idea of any links between diet and the condition and you should continue taking all your immunosuppressant medication, steroids and any other drugs they see fit. You are pulled in all directions and by the very nature of the extremity of opinions and personal experiences you can’t do all of it; you can’t implement everything, that makes you feel guilty. Who is right? What is right? Argh!

Living this way, this idea of managing your illness perfectly and doing everything by the ‘book’ (whichever book you decide that is) is exhausting.

So how do you manage this? How do you manage your condition? Well, the way that I have found… in the words of Frank Sinatra, ‘I did it my way’.

I read! I read so many articles and peoples accounts of living with RA to educate myself on the condition and the research currently being undertaken. Some articles I can relate to, and others not so much. I use all this information to form my own opinions. I try new things, alternative therapies, essential oils, dietary changes and when starting or changing medications I consider what my consultants say, I do my own research and I ask questions. Most importantly I listen to my body and my mind.

Overall I choose to manage my condition in my own may, a way that benefits me. Currently this is through a combination of diet, exercise and medication. Most importantly I feel like I own my illness, I own my treatment and I own my decisions. This empowers me and makes me feel that I am in control of something that often feels uncontrollable.

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