Girls with chronic illnesses either detest princess stories where everything ends up okay in the end because they’re unrealistic, or they love them.
My rheumatoid arthritis is the thorny rose patch and dragon keeping my prince charming away. For some, this could be taken quite literally – they don’t date because they don’t feel adequate or are just so ill that they don’t need the extra stress that a relationship can cause.
For others, we are caught in a continuous battle to stay ‘okay.’ We are waiting for a cure that we know, we swear is on the way. But it keeps being delayed, and we stay stuck in our towers – alone.
Alone doesn’t quite fit though, does it? In reality, we are a part of the normal world and we function (sometimes) in it. Isolated probably is a better fit.
I’m around other people, sometimes, and I do have the ability to interact with others. But still, there’s a difference – even if the people around know about RA and how bad it can get. They haven’t felt the pain or the other problems that can arise from a chronic condition. There’s no knowledge of the isolation, the exhaustion. The worst part is, no matter how much you explain it, they won’t ever know.
And so we sit in our towers, staring out the window and waiting for our rescue – one that, for the vast majority of us, we will never live to see. And there’s not much else we can do but wait and hope, and try to avoid the hopeless feelings that are inevitable.
Very, very true. Tying to explain what chronic illness is like to someone who doesn't have one I sometimes think is futile. Words do not do it justice.
Hi, i was reading this just out of interest as i have STILL's :(. I was diagnosed with JRA (Juvenile Artheritus) at the age of 4 and then at the tender age of 10 was diagnosed with STILL's and then diagnosed again when i was 14 (weirdly). living with stills… where to start! as far back as i can remember i dont know what its like not to have this disease. I have atheritus pretty much in every joint including wrists, jaw, knees urm everywhere really. The worst it got when i was 10, they took me too hospital coz of a fever, rash, sleepy and achy all over, they thought it was meningitus!!! which was later confirmed i didnt it was STILL's. It got sooo bad with the extended bowel (which is part of the symptoms) that i had to have an emena thing which is where they flush number '2s' (poo) out of the bowel coz i didnt 'go' for months, turned out i actually poisoned my own body. I was always picked on for being very thin and still do now. It went into remission for many years with the odd flare ups so i got married and had a child she is now 2! however it has come back with avengness and im now 23 and getting the same old stuff back again, not fun when trying to keep up with a very busy 2 year old! lol
My mother did the right thing and never told me i had STILL's so i actually thought that it was normal to feel this way, so on depression front i was ok, for a little while at least :). then i noticed that some days i couldnt even get out of bed and sometimes my hands and knees especially just didnt have any energy. Although it has come back…again, i cope by doing a little exercise, but this is difficult when i have no control over my weight! which some people find me lucky, i however dont think it is. Trying to explain STILL's to my husband is a nightmare! but luckily he just lets me rest when i need to. The things you have written reminds me soooo much of how i used to feel! was very bizarre but lovely to see that someone who has it has spoken out. maybe… just maybe (although its wishful thinking) they will have a cure for this terrible disease. 🙂