I guess the title of this blog sums up what it’s like to have an undiagnosed illness, especially one that is chronic in nature. One whereby one day you get sick and then you never get better. Bonus points for having an illness that hits when your young and lost and there are many other things also going in in your life and bam. It’s a recipe for depression to be totally honest.
I had very much managed to put the fact that I was ill to the back of my mind for a while, it was very much just “I’m hurting because I’m about to get my period.” or “I’m nauseous because I’m about to get my period.” However much when my symptoms first started I knew something was wrong I guess I had managed to kid myself that nothing was and I was able to be happy and not live in the world of fear and confusion. The world that I spent a good few years of my life in.
And even now when part of me very well knows something is wrong I can be happy despite the fear, and the confusion. I can be happy by being busy, by being distracted. My hanging out with friends and family. Or just my appreciating the little and simple things in life, such as the sun setting or the weather.
That fear and confusion does still get to me though. It gets to me when my mind isn’t occupied or when the pain cannot be ignored even with use of pain meds. On the nights I lie awake in pain, or the days of never ending nausea or seemingly permanent bloat. When my friends start talking about when they want to have kids and how many and names and you realise you might not even be capable. When other people online moan about their pain and it seems way worse than yours and you end up comparing yourself. Questioning whether how you feel is just normal and your just weak. Because you can’t possibly have endometrosis, PCOS or any other condition because the pain isn’t that bad. The nausea isn’t that bad. The bloating isn’t that bad. And overidingly because you do have good days, Days where you actually feel like an energetic, healthy, functioning member of society.
Lots of concerns and lots of questions come into my mind on these times. When I was younger it was a lot of “What if I’m dying?” “What if I have cancer?” What the hell is wrong with me?” Now it’s a lot of “What if I can’t have a kid?” “What if there is nothing wrong with me?” What if it turns out that I’m just weak?” “Why can I not just deal with this already?” “What if it impacts my career aspirations, my chances of being a well functioning member of society?” “What if I end up on benefits and looked down upon?” “What if everyone hate me because I moan and I’m ill and that’s all there is to me?”
It’s that sort of thing that really gets me down. The fear that there is nothing wrong, that everyone will hate me, that I won’t be successful in life, that I won’t have kids. Along with the confusion over what is wrong. Is there anything atall. And yes I have been to a doctor since I last wrote about being chronically ill. But I had no medical tests. I was prescribed pain meds ever so slightly stronger than ibuprofen and told to see how that goes.
Fact of the matter is that they barley work. And seeing as I’m going to have to pay for my next prescription there’s no point taking it. They are not worth £8.40 or however much a prescription costs these days.
And then there’s the knowing that I need to go back once term starts again but the fear kicks in again. Students can’t book appointments so there’s the going down to walk in having to possibly see a different doctor, explain the scenario again. And then there’s the fact that this doctor may not believe it’s endo. At least the one I initially saw did. And preceded to look at me as if I had cancer. And they may just say it’s IBS or in my head. There’s the knowing I need to be pushy. Ask for referals and ultrasounds but not knowing how to. Being scared to….
And it leaves me pretty stuck to be frankly honest. Being chronically ill is hard but there is a life outside it. There is happiness outside it but sometimes the illness gets me down.