Cloak of Invisibility - Mystery Illness?
Updated: Feb 7
Living with an invisible disability is sometimes a blessing and sometimes a curse. On one side of this double edged sword I feel fear of being misunderstood, constantly battling people doubting me and thinking I'm pretending - including doctors - and getting completely misdiagnosed and not supported in the management of my condition. On the other side of this is the privilege of not walking into a room with all eyes on me, judging me, infantalising me or pitying me. People don't talk down to me because I don't have a visible disability that causes them to underestimate me. Which does however mean I get overestimated in certain situations and get lots of confused looks when I can't perform 'basic' tasks. So due to the invisible nature of my disability, I have decided to write this blog post. See it as a sort of 'coming out'. For me this is a way of explaining things without having to explain every. single. time. Also, there is a lot more information I have now, that was unavailable to me when I last wrote a post and was still undiagnosed/misdiagnosed. And I say 'coming out' in quotation marks because really, the only reason I feel like I need to come out about this is because no one knows the signs unless they too have a chronic illness.
So what is this mysterious thing? It's called Ehlers-Danlos Syndrome. Or EDS for short. And It's a rare genetic connective tissue disorder. Basically the gene responsible for creating collagen in my body (the glue that holds everything together and is present in nearly every part of the body) is faulty. Which causes a whole host of symptoms including partial or full dislocations of joints on the daily. This is painful, as you might imagine. It's a little bit like riding a bicycle where all the bolts are loose. My muscles try to compensate for my lax joints by tensing up to hold things together. So imagine you are on a roller coaster feeling scared and holding on really tight. You might step off and feel alright afterwards. But if you spent all of your time in a clenched and hyper-aroused state on a roller coaster you would probably notice that your muscles ache like hell from the strain, that your nervous system feels frazzled and you are very fatigued. There are 13 main types of EDS and I have hypermobile EDS, the only type which still has no known genetic test. hEDS tends to be viewed as the least severe type as it doesn't come with the same life threatening symptoms (like organ prolapse) as some other forms of the condition. It does include fun things like chronic digestive issues, fatigue, spine deformities, muscle tears, bruising easily and a propensity towards endometriosis, early onset arthritis and osteoporosis. Personally, my symptoms knowingly began in adolescence but got far worse in my early twenties. I was diagnosed with Sheuermann's disease - a developmental spine disorder. I was in line for surgery for endometriosis, to deal with the debilitating menstrual pain, pain during and after sex, vomiting and diarrhea. I was forced by my doctor to leave my job of 5 years, supporting people with high support needs disabilites because I was unable to hold a toothbrush or a cup of tea properly anymore. I didn't understand why I struggled so much in the hot or cold and constantly felt faint and tired. People told me I was 'too young to be sick', that I was being a hypochondriac, and if I dealt with my anxiety none of this would exist anymore.
I was tested for autoimmune and thyroid diseases, had hair analysis and blood tests, ultrasounds and x-rays, hormone tests, alternative, eastern and western medical tests done. I ate supplements and bone broths, leached heavy metals from my body, climbed into a hyperbaric chamber, had a colonic, tried frog venom, became a heavy gym user, stopped eating suger and carbs, had spinal and skull adjustments, acupuncture, bowen, pilates, rest, rebirthing... you name it.
I was eventually diagnosed with Chronic Fatigue Syndrome from a bunch of parasites I ingested on a visit to Indonesia that gave me a trip to the hospital and a postponed flight. It took me 4 years to diagnose and cure CFS. And while my life improved drastically after that was fixed (I could actually get out of bed!) it still didn't solve or explain everything. I finally received a diagnosis from a doctor who's daughter also suffers from EDS. Through my research and challenging journeys with this rare and invisible illness I have learnt so much about what helps my symptoms and what makes them worse. But there is no cure. In fact all I can do is slow down the degeneration process as much as possible. I spend a lot of time and money every week on this and while I'm so grateful to finally understand what it is that's causing me pain and how I can support myself, I still get surprised because it still gets worse.
One reason I have taken so long since being diagnosed about 3 years ago, to write this post is because I often live in denial. Years of other people telling me I'm silly made me doubt myself. And part of me doesn't want it to be real. So I attend events, convinced it will be fine because of the daily rehab exercises or the supplements or my strict diet or the countless medical appointments or the fact that I no longer work normal hours so surely the rest will have made it better. But really, I've been neglecting the truth which is that none of that fixes it. Despite living with this, I've never really understood. I used to think everyone had this much chronic pain until I realised they don't. Then I thought if I was really really good I could make it go away. Which is rather arrogant and naive of me, really. So I guess writing this piece is a way to help me accept that I'm probably never going to function the way I expected to. I'm probably always going to have to leave the restaurant early because it hurts too much to sit in a chair. I'm probably always going to be the person that has to swap positions in bed because laying on my side and kissing someone isn't something I can do as long as they can, before my femur starts to slide or the sprained joint in my neck aches. Despite all of this I am grateful to be in a body that lets me do so many things. I'm also aware how privileged I am to live in a country with access to the health and government services that exist. I'm also so glad that I figured this out when I did and that I didn't have to wait longer before finding ways to give myself the best possible life. Even being forced out of my job was a blessing in disguise because it forced me to work on my passions and develop my counselling skills further. I wouldn't be teaching or supporting clients through their own healing journeys if my body hadn't shown me the way there. I have greater empathy when a beloved has to cancel plans for health reasons. And I understand that sometimes things take time and that self care isn't just a cliche to post on instagram about. I also understand that you really can't judge a book by it's cover and people have so much more going on inside that you can't possibly know about. So next time someone trusts you enough to let you in and give you a glimpse of what's going on inside them, start by listening. And believe them. with love, August