September is here again which means it’s alopecia awareness month!
This year feels very different to last. I did a lot to raise awareness last year: fun hat Friday events both here and in Dubai, I spoke at my old secondary school and posted every day on social media…but this year, for one reason or another I haven’t prepared or sorted anything.
Last year I found it almost easy to raise awareness, I didn’t mind sharing my story or taking bald selfies but this year I feel differently. Now, don’t get me wrong, I will always want to raise awareness for alopecia but my own self confidence has plummeted over recent weeks resulting in me feeling less comfortable in my bald skin than I have before.
Even the slightest glimpse of myself that I might catch in the mirror or reflection in a window makes me well up. I’m avoiding mirrors again and feel very un-accepting and feel resentful of everything my mind and body is. As always my smile masks a million thoughts, feelings and daily battles – to do with alopecia and much more and it does make me sad that I feel this way about myself because once you lose that sense of self-worth it makes everything else very difficult. However, I hadn’t really thought much about it until I was going through one of my ‘unhelpful thought pattern’ diaries with my CBT therapist where I broached this topic. They are normal, daily thoughts I have about myself but I was brave and decided to share that with her and her response was shocking to me. She got quite teary at the language I used to describe myself and crossed out some of my ‘evidence’ to support my thoughts! This is what brought everything crashing down to Earth for me, seeing someone else’s response to my ingrained self worth.
Now I’m not writing this blog for sympathy or to get nice comments – far from it. I almost didn’t post it because it because it’s so personal but I do feel that it’s an important blog to put out there because alopecia and ME/CFS doesn’t follow a linear pattern (I’m desperately avoiding the word ‘journey’ or ‘roller coaster’ here!). People say time is a healer and generally I do believe this but at the moment, a year down the line, in this circumstance it’s not true.
I am obviously writing this from my experience but my feeling about alopecia robbing me of my femininity is stronger than ever. I have always been my own worst critic but I always said my best features were my hair and eyes – and alopecia has taken that from me, to the point that if asked, I genuinely wouldn’t be able to tell you one physical part of me that I like. I wasn’t going to write about this but hey, I’ve been open in most other aspects of my life so here goes!
Weight has always been an issue for me, I am your stereotypical yoyoer. I first joined Weight Watchers when I was 16 so in reality my weight issues have been going on for over half of my life. Just before I became ill though I had had strong words with myself, took advantage of the pool on my roof, invested in a cross trainer and signed up to The Body Coach scheme. I lost just over a stone and was feeling great, I had a grip on myself and for the first time in years, felt great. But as it seems to go with me, this is when ME took a hold as did the various concoctions of drugs, many of them having the side effect of weight gain which to be perfectly honest was/is a right shitter because if you’re asleep or immobile most of the time and minimal exercise causes excruciating pain, the only result is going to be the enormous growth of Hannah Green! I know it’s happened, I can feel it, and when I dare to, I can see it. So the combination of this plus being bald, still not being able to wear make up or hats or wigs – you can see maybe why I feel so yuck – and that’s putting it lightly.
There are so many people who I’ve connected with who have ME that are experiencing the same as me in terms of drugs and weight gain and feel the cruelty as deeply as I do. It’s just an added thing to make you feel rubbish but also, as we know, weight gain will impact your joints and muscles meaning increased pain and decreased progress, it’s such a vicious cycle. I feel less and less inclined to go out, see people, do anything. I’m not giving into this by any means but I am definitely having more days where I could easily stay in bed – partly because I’m low and mainly because I am just flat-out exhausted. However, this is going to be the next area to tackle in CBT so hopefully I’ll see changes or learn coping mechanisms soon.
Haha I’ve just had a little read back – what a cheery blog this is! Seriously, I do manage to yank myself out of bed every day, put the smile on (most of the time) and get on with it because there isn’t really any other option in my eyes.
So, bringing this full circle, this year I feel less confident in my alopecia skin, I would feel a fraud using hashtags like #baldisbeautiful because for me, right now, it’s not true. Of course I will still be doing little bits and bobs to raise awareness however, in a few months I will be able to share something very exciting with you that I’ve been working on and that will be my contribution to this years alopecia awareness.
So, my little reminder to myself and to other people is to remember that everyone is fighting a battle that may not be visible so don’t pass judgement. Just be kind.
Happy alopecia awareness month.