This is such an odd topic and one I feel isn’t discussed enough. The guilt and shame that comes with being chronically ill. From having zero control over how you feel or curing your illness. But also the guilt that comes from not being as affected as others that have the same condition.
When I was first diagnosed with Fibromyalgia, I did what everyone does – I started googling and looking online. I began searching for people on social media with the same illness for support and a sense of community but all it did was make me feel guily. I wasn’t as ‘ill’ as them, I don’t spend days on end in bed or getting rushed into hospital. I haven’t had to quit my job, I still go on holidays and trips, I still go to the gym etc.. I just couldn’t relate to these people and it left me with a feeling of maybe I don’t have this illness, I am nowhere near as ‘ill’ as those people and now I feel guily talking about being ill because I can still do so much.
It is so hard to get out of this mindset of judgment. No I am not bedridden or unable to do things I once enjoyed but I am still ill. I do still have fibro and I am affected by it. I do have days when I am aching and tired. Days when I can’t do much more than get out of bed and cook. Times when I am out enjoying myself but have to take a break because I am exhuasted. Times when I have to skip the gym or work from home because I ache too much to sit in the office. But I couldn’t find these relatable peope online. So I decided to become one. To share my story and my experience of chronic illness. I am not the extreme and to be honest, I am probably more of the majority.
It is a work in progress not feeling guitly. People see me going on holiday, working out, socialising with friends but they don’t see the price I pay for that. The times when I am in my trackies on the sofa whilst Chloe cleans the house or cooks because I just can’t. It is hard to show that side, to admit you need help. In the begining I really struggled. I was independant, I took care of other people, I prided myself on my ability to be self sufficent but now I do need people. I do need Chloe to help me or take some of the burden. It’s been a hard pill to swallow – my ego did not like taking that bashing. But allowing others to help me has allowed me to have more good days than bad days.
My goal for 2020 is to share more of the bad side of things, to show the true picture. To hopefully be relatable for someone else in my shoes who does have a chronic illness but is still functioning well (most days!).
I am chronically ill with fibromyalgia and I will not deminish that or feel guilty about the fact that I can still do a lot. I instead will be thankful for all I can do and show others that a chronic illness does not have to be an earth shattering complete change of existance.