So illness and disability are lonely, this we know. It’s often very very hard for those around us to know how we are feeling and what we are suffering.
I went to my first fibromyalgia support group this week which was a really positive experience for me. Although it’s sad to see others suffering it’s also very reassuring to know that you are not alone, not going mad and most of all to stop that niggling little doubt that it’s all in your head. It’s also really useful to share your experiences and advice and support one another. It was also reassuring to see such divergence in the group although we were all women we were all ages, shapes and races. Fibro doesn’t discriminate.
On a more negative note I received a hateful email from a so called friend telling me that she could no longer be friends with me due to my “disgusting” behaviour. To be clear by this she was referring to my “moaning” about my illness and having my elderly mother push my wheelchair at an expo I had gone to with my parents. Don’t get me wrong, having my Mum push me is not something I enjoy, nor a frequent event. For starters I am not light and she is not strong so it’s not hugely practical. Secondly I don’t want to be a burden to anyone and she already does so much for me. If I didn’t need help I wouldn’t ask. It took me many years to start asking for help and start holding my hands up to things I can’t/shouldn’t do so asking for help is a big deal. She then went on to say that I am clearly just lazy and doing some exercise and losing some weight would make everything better.
How much I wish our skin changed colour with disease and pain! Hyper colour skin would not only help doctors diagnose us, but would also stop benefit agencies and so-called friends etc from thinking that we are faking it or exaggerating. In fact I can think of many reasons why this trait would be useful although it would somewhat limit one’s privacy.
It hurt me so deeply to receive this email. Not because she was a great friend to lose, but because I feel she has said what so many others are thinking. Many of my friends have disappeared since I became ill. Some I’m sure for natural reasons, but some whom I hold so dear, I fear either feel the same as this writer, or simply don’t find me “fun” anymore.
Frankly I don’t find me fun anymore, but I don’t have a choice. I try to “enjoy” each day with hobbies and stimulating tv/radio, and leaving the house is truly wonderful when it happens, but I still feel guilt for “doing nothing” with my life, not working, being “lazy” and generally being a burden. If I slept properly perhaps the pain would be less or vice versa. If my head didn’t hurt all the time perhaps I would find it easier to concentrate. If I was in less pain and had more energy, perhaps I could bring myself to exercise more often. The list goes on, but the day-to-day remains much the same.