The 'Disbelief Trauma' of Living With a Rare, Invisible Illness

The month of May happens to be the one where Ehlers-Danlos syndrome awareness is touted around. My nearest and dearest, thankfully, are pretty aware of hypermobile Ehlers-Danlos syndrome (hEDS) now, as that is the type I struggle with. They understand as much as anyone can without having lived in my shoes.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

There are so many aspects I could draw your awareness to, but there are two biggies for me: living with invisible illness and the mental trauma associated with having a rare illness. Most people who know me see a face full of smiles, they see pictures of me having fun with my girls, they see photos of me on holiday, they bump into me out and about and tell me how amazing I’m looking – and it’s right about this point where I usually hear something akin to “I’m so glad you’re better now,” or “Don’t let yourself slip back to where you were, will you?” or “I’d love to stay at home and not work.” Now, here’s the thing: I’m not better. I have little “control” over hEDS. It’s like living in a game of Jumanji, or Russian Roulette – every time your body lulls you into a false sense of security, you sneeze and “oh balls, my ribs and jaw have just popped out.”

It sounds a bit like one of those stories you read in trashy women’s magazines – but this is my life. In fact, this is every minute of every day of my life, so if you bumped into me five minutes after that sneeze, you’d see me, Lara. What you would not see is the intense nerve pain in my face, or the muscle spasms around the ribs. Or the previous five days where I’d been unable to leave home due to pain. Or the number of increasing medical appointments that quite frankly require their own PA!

I may not have much control over hEDS, but I do have control over how I choose to deal with the pain. Most of the time, I manage to conceal the pain well; it’s become so automatic that I don’t even need to consciously think about concealing it now. Sometimes, I’ve spent a whole afternoon with my shoulder subluxing (slipping in and out of joint) and not said a word to the friends around me. To anyone other than someone with hEDS, this may sound bizarre – how could I not even say anything?!

There are many reasons I conceal my pain: habit, shame, feeling like I’m “negative,” fear of being disbelieved, feeling like a burden, knowing people tend to either not know what to say or skate around the issue like it’s a pink elephant in the room. Concealing my pain is, I guess, easier – particularly when you live with the associated mental trauma of having an invisible, rare illness.

It took two years, two traumatic years, seeing around 20 medical professionals and being faced with disbelief from most people around me. How could I be in quite so much pain if I didn’t swell? My partial dislocations couldn’t be seen on an x-ray (of course not, they pop straight back in!) – so they must not exist either, and pain relief didn’t even touch the sides. Bingo! It must all be in my head.

The trauma of this process did not, unfortunately, end there. Every time I need a potential trip to the hospital, my brain enters fight-or-flight mode – what if I see yet another doctor who tells me the pain is all in my head? One consultant even wrote a letter to my GP to tell her my pain was all being caused by depression. “Take her off of all of her pain meds!” he said. Thankfully she knew me better than he did.

The knock-on effect of living with a rare illness is: many doctors know less than you do about your own condition. This is scary. I’ve seen doctors who just blindly guess, not even admitting they don’t know, and just send you on your way. There are some amazing doctors out there too, don’t get me wrong. It just takes decades to find them.

The effect of disbelief trauma does not stop there. The panic and fear that seeing a new doctor/consultant/physiotherapist/nurse brings means that I often don’t go to the ER even when I know I need to go. This sounds silly. Even typing it out, I know it sounds silly! And yet that fear and panic make me freeze. A bad subluxation of my shoulder during 2015 left me with severe problems that I just “put up with” for over a year before I finally sought help – by which point it was subluxing 10+ times a day and I had severe nerve impingement. There was one particular day when the pain was so bad that I thought I was having a heart attack.

I ended up living with anger on top of the pain – anger that I’d let myself down. I’d let my family down. But I’m hoping you can see why I ended up in this place. In reality, it was not me who let my body down but the system – the care I should have received was not available. hEDS is too rare for regular consultants (even senior ones) to have enough experience to treat me. I guess it isn’t their fault either.

It leaves people with hEDS not only in limbo, but also trying to deal with repeated mental trauma. The mental trauma of being treated by medical professionals who quite frankly often can’t even pronounce the illness I have, let alone understand it, leaves a lot of distrust.

Over the years, this disbelief has also been prevalent amongst teachers, family and friends. This hurts the most. But I have learned that although there will always be people who choose to disbelieve the severity of how my illness affects me, there will also always be people who do believe me.

There will always be those friends who ask you how to spell your condition so they can go look it up at home. The friends who follow the hEDS pages on Facebook and even tag you in things they think may help you. There will be friends who send you motivating quotes when they know you are hanging on by a thread. There will people who will send you silly Snapchats at regular intervals, just so you stay smiling through the tears. There will be friends who will just send you an emoji every time they think about you. There will be friends who send you random messages all day, telling you what they love about you, just to ensure you make it to tomorrow. There will also be those friends who will accept and say out loud how crap things are – because of course, there may always be someone “worse off,” but blow me down, this is excruciatingly tough sometimes, and there are days it is hard to feel “lucky.”

I could educate you even more about hEDS and all the nitty gritty it entails – but there comes a point when that seems almost futile. I am just one person with one rare, invisible illness – for every “me” there are countless others living with disbelief and the mental trauma that comes with it.

Here’s where you can help too… If ever someone opens up and tells you they live with an invisible illness, rare or not, please, from the bottom of my heart – believe them. Believing is not synonymous with understanding. You do not need to understand the ins and outs to believe someone. Ask them where you can read more about their illness. Ask them how you can help. Share their fundraising attempts. Understand that posting on social media about their illness is not attention-seeking – it is a mixture of frustration, venting and raising awareness. Keep asking them to meet up, even if they have to decline many times. Recognize that they are also probably dealing with mental health issues too; it is hard to live with chronic illness and not be affected by depression. And, depression or not, talking can help massively – if you aren’t strong enough yourself, support your loved ones in getting some professional help.

If you take one thing away from this article, obviously an awareness of hEDS would be amazing, but more importantly, I’d rather it be the effect of living with invisible illness, and the mental trauma that it can bring along with it.