Spreading Awareness & Helping Others with EDS & POTS
Something people may not know about me is that I’ve struggled with my mental health for a long time. I’ve been living with anxiety much longer than I’ve been living with the symptoms of my physical conditions; so why do I find it so easy to talk about my physical difficulties and discomfort but almost shameful to talk about my mental ones. Anxiety disorders affect 1 in 8 people each year, I’d argue it is now probably even more common in a COVID-19 world, whereas hEDS affects 1 in 5000 so I figured it was about time to address this imbalance and finally give my anxiety a nod.
I remember having my first anxiety attack it was in an exam that I was too young to really be taking, the worry built up and built up until I couldn’t focus on the questions, completely blanked because all I could think about was how I wasn’t good enough and how I was going to fail until all I could do was cry in the middle of the exam hall. Of course it ended up as a self for-filling prophecy and I ultimately did badly. For me my anxiety manifests as never being good enough. I always feel I should be doing better and doing more, which is a bit of a nightmare when you also have the energy limits of a chronic illness. Sometimes it’s little things like not wanting to phone people because I’m scared of what they might say or what I might say, I much prefer to email so at least I have a vague sense of control on my end. Other times it’s crying alone in bed because I fear those I love will leave me however much they try to reassure me. For a long time I had Trichotillomania where I would pull my eyebrows out with my fingers without even realizing often in the middle of class at college or uni due to the stress my anxiety was causing and I would have to hide it with makeup. Today, I feel like I’m a bad friend, a selfish girlfriend and that I’m not doing enough in any of my jobs including supporting my online community. I feel awful taking days off because I worry about missing something or being seen as lazy. This is where anxiety and depression can often meet, when believing that you will never be good enough begins to turn into ‘What’s the point?’
Then there’s the anxiety that often comes with having a chronic health condition. The fear of seeing new doctors who don’t understand or blatantly belittle you. The ones who tell you it’s all in your head and you’re being dramatic. The ones who can’t see the difference between mental and physical illnesses and the ones who can’t understand they are also linked. Like so many my POTS was misdiagnosed as anxiety, even though I knew this wasn’t the case (I knew the difference). What was worse was that I was then never given any care for my anxiety. I’d get frustrated and upset, angry at myself and others. This disbelief I had from the medical community for so many years means that seemingly confident me just shuts down and cries whenever a doctor says something I don’t agree with and I’m unable to advocate for myself the way I should. Psychology is often offered as part of pain management programmes and this can scare many people off because they instant believe those Drs think their pain is in their head but actually they are trying to undo the harm and mental strain caused by not only the pain itself and how that can make you feel but also the medical trauma left behind.
These days I’ve had my fair share of therapy. It hasn’t cured me and I don’t think it ever will. Some I absolutely hated and dreaded their appointments often avoiding them. Others have been great and although I found some of their practices difficult I was able to talk openly and freely about how I was feeling and in turn was able to talk to friends and my support system who I didn’t want to bother before because I felt they didn’t need my problems on top of all of theirs.
Obviously this is just my experience and there have also been dark times that I don’t want to relive out on the internet but I hope in sharing a snippet of my story I can help to normalize anxiety and other mental health struggles and break down the stigma so we don’t feel so afraid to talk about it.
I also have a few final reminder to those who have been lucky enough not to struggle themselves. Firstly, I am the happiest I’ve ever been with amazing friends, a wonderful boyfriend and a stable job and home but I still struggle with anxiety: happiness does not necessarily equal wellness. Finally I want to share my favourite quote which reminds everyone not to judge a book by it’s cover: Every one is fighting a battle you know nothing about, be kind, always.
Don’t forget to wear yellow today to spread awareness of World Mental Health Day
Spoons & Love
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