I’ve been thinking about advocacy this week. Should we have to explain our symptoms and conditions?
I tend towards telling people the truth, by answering the question of “how are you” with “pretty bad today, lots of pain, feeling really tired and my brain isn’t really working very well, how’re you doing?” Or however I am actually feeling that day. Recently I’ve been saying “fine thanks” and a post in my support group reminded me that we all do this, we all answer “fine thanks” most of the time. There are very few people that I used to tell how I was doing. I’ve increased this recently as I want to raise awareness about invisible illnesses and how they affect us. To make people more aware of how we have to manage, push through adapt and cope with what we have to go through and live with everyday. I still struggle with telling some people, and I have recently been faced with some negative reactions from people who obviously don’t understand my condition and daily struggles, but I haven’t told them, so how would they?
I am struggling with work and went to see an occupational health specialist who was the most offensive medical person I have ever met! I have listened to friends talk about the doctors they have seen who haven’t believed that they are ill. I’ve read articles about ME all being in the mind. I’ve read posts and blogs from people who’s physio’s and occupational therapists give contradictory advice, but I’ve never experienced it myself until yesterday.
I’ve spoken to people who’ve lost friendships and don’t have the support of their family, or who can’t be honest with the people close to them as they just don’t understand. I’ve never experienced this. I’ve found it difficult to explain to people what I struggle with sometimes, or how me going out isn’t just about the time that I’m out, or the energy required for that specific activity as I also have to take into account getting ready, driving there, talking, driving home, taking my meds with 1 hr between some of them, winding down and my bedtime routine. So a night/afternoon out for me is a huge thing and takes a lot of thought and planning. I need to figure out what else I’m doing that week. What I have to do, and then plan in things that I want to do, but if I’m not feeling well, then I have to cut out the things that I want to do, so just because I can manage to get to work, it doesn’t mean that I can manage to go out as well, cos I’ll probably not be cooking or having showers as often as I want to because I just don’t have the energy to do everything. On the flip side, if I’m not well enough to go to work it doesn’t mean that I can’t go out. I’m advised to get up, get dressed and go out everyday. Sometimes I can’t manage this, but sometimes this is exactly what I need to do, to keep my muscles from siezing up, as well as helping to improve my mental health so that I can stay positive and cope with being in pain constantly, and always exhausted so that every single thing in my life is a huge effort.
Have a watch of this young woman’s story, she made a documentary which was shown on ITV to promote awareness of invisible illnesses and how people mange with them.
She’s trying to raise awareness of invisible illnesses, just as I am, and she’s totally right in the final comment on the clip above, that we shouldn’t judge a book by its cover. I know people with all kinds of different invisible illnesses and we shouldn’t have to explain ourselves to every single person that we meet. Life should be easier, and people should be more kind, caring and considerate towards each other, but often this just isn’t the case. So I’m going to keep raising my voice, to keep telling people how I am feeling when they ask, and to promote the amazing adventures that we are all having, in addition to having invisible illnesses. I don’t want this to be everything about my life, so sometimes I won’t tell the whole story, but I will say something, even if it’s just blowing a raspberry 😜
What have been your experiences with the medical profession and friends and family?
How do you feel about having to explain your health to people all the time?