In September time, my mum talked me into going to a support group for endometriosis. I’m so glad she did. Even though I’m still relatively new to the group and the youngest girl there by far, I finally have people who know what I’m going through and understand. Because of the group, I no longer feel ashamed of having this ‘girly disease’, it’s no different from having something like diabetes, it’s not my fault that I suffer from it. I’ve taken a new ownership of my body, endo and all, and I’ve gained the confidence to fight for treatment and recognition.
I started telling people what it is that’s wrong with me. Everyone knows I’m not well, I haven’t been well for years but never before have I given them a name, something they can Google and see what exactly it is. I felt embarassed. But I’ve realised that I have nothing to feel embarassed about. It’s ridiculous that when I dislocated my kneecap a few years ago I got buckets of sympathy for 6 weeks while I hobbled about on crutches, yet I’ve been living with endo (an altogether more horrible thing than a bad knee) for three years and no one really cares.
March was Endometriosis Awareness Month. The leader of our group sent letters to local papers to try and raise awareness. One paper (one of the biggest Belfast papers) responded asking to do a feature using girls from the group. As I’m the youngest, I offered a perspective that was very different from everyone else so I agreed to do an interview. My interview was conducted over the phone and lasted about ten minutes. The journalist had already interviewed the other three women and I was the last. After sending her a photo (a very cheesy one of me at my graduation last summer) we all waited for the finished piece.
I bought a copy in the petrol station on my way to the library and sat in the carpark to read it. I was mortified. The headline for my part was ‘At 22, I had an artificial menopause’ right next to the cheesy photo of me. Yes, that was true, I did have an artificial menopause at 22, complete with night sweats, hot flushes and HRT but did it really need to be my headline??
And it got worse…The reporter had turned my ten minute interview into a first-person narrative as if written by me. If that was what she wanted, I would have written it myself! Instead, this cobbled together story didn’t even sound like me, it was awkward and the sentences didn’t even make sense at times. There were also little fabrications in it which I never said. Possible the weirdest was “I can’t wear jeans anymore because of the pain in my thighs’. WHAT?! In answer to her question about how endo affects my everyday life, I mentioned that I usually wear loose dresses and skirts because I can’t stand tight fabrics pressing on my stomach, not once did I even say the word ‘thighs’. I should also point out that my part of the feature appeared right next to a checklist of symptoms of endo and right at the top ‘pain during intercourse’….yup, right next to my apparently painful thighs.
And if that wasn’t bad enough, my little story ended with a complete slating of my ex-boyfriend. The reporter checked that I was single (as everyone else was married) and then, talking about the horror of the menopause, I mentioned that it was difficult for people to understand, my 20 year old boyfriend didn’t have a clue what was going on. She pounced on this tidbit and asked if we had broken up due to my illness, I said ‘no, not really…’ She then asked if we had had a good relationship and if it was serious. I then asked if we could talk about something else. This was translated as, ‘I lost a boyfriend because of this disease. We had a pretty good relationship but it was hard for him to cope with. He was only 20 and this was all a bit too grown up for him.’ I am so glad my ex doesn’t read newspapers and I hope that no one has seen it and told him.
Anyway, casting that public humiliation aside, I’ve now been asked to talk to the Minister for Health about endometriosis and my experience of the NHS. I think its important that more people are made aware of the disease as well as the staggering average of 7 years from complaint to diagnosis. I’ve suffered for 10 years and still most doctors would rather believe I have IBS (Irritible Bowel Syndrome) or that the pain I experience is psychological rather than listen to me and take heed of the fact that endo was found on my ovary four years ago.
What does it really matter if I feel embarassed for a day or two? I really believe in raising awareness of endometriosis and as long as these opportunities keep coming, I’m going to take full advantage. Who knows? Someday I could be the poster girl for endo! What a scary thought.