Living with chronic and invisible illnesses is hard – believe me! It can be even harder when you are trying to find help among healthcare professionals who don’t have a clue about your conditions or what you are going through.
That’s why a lot of us in the chronic illness or “spoonie” community turn to others, often online, for support. There are numerous amounts of Facebook support groups, online charity support groups, vloggers and bloggers that provide plenty of information and advice for anyone who is looking for it.
I started blogging for two reasons – 1) I wanted somewhere that I could release my thoughts and emotions, and 2) I wanted to give back to a community that has helped me so much. I actually wanted to start blogging for a lot longer but didn’t have the confidence and didn’t know where to start, but it took a particularly painful weekend and a burst cyst to open my eyes to how brilliant it is.
Oh, and if you want to know why I christened my site Endo Bunny it’s because Endometriosis is my biggest health problem and I have 2 bunnies whom I love very much.
Anyway, when I was first diagnosed with Endometriosis and Interstitial Cystitis, I was never really given any education or advice on the conditions. I had to do a lot of research and ask a lot of people about them before I properly understood what was going on with my body. But it wasn’t just as simple as that – a lot of healthcare professionals I came across didn’t actually know what my health conditions were and what they entailed.
One doctor told me that she “couldn’t feel any Endometriosis” therefore “I didn’t have it”. Another told me “they didn’t have my operation note” therefore “they didn’t believe I had it”. A consultant told me “Endometriosis didn’t occur on the bladder” after I was diagnosed with it there. Multiple people have told me “get pregnant to cure it”. Others have stressed how “pain relief is the culprit”. All completely misinformed (or ignorant, I haven’t figured that out yet). This doesn’t just circle around Endometriosis – it’s just the main one that I experience a lot of problems with (and I think that’s because its about “womens things”).
I’ve learned the hard way that if you don’t raise your voice or make a fuss, then you won’t get anywhere. That’s not me being a spoiled brat, it’s me knowing what’s right for me and my body – there have been so many times that I’ve been right when consultants have not believed me its actually shocking. I can’t seem to understand why people seem to know our conditions better than us living with them.
The more of us that speak out about what it is really like living with these conditions, the more people will see and understand. That’s why I am sharing my story on as many platforms as possible. Our invisible illnesses need to become visible.