What the hell is wrong with me?
Let's talk about invisible disability. I have Ehlers-Danlos Syndrome Type 3 (EDS3), now known as Hypermobility EDS, or hEDS.
EDS3 is a congenital, incurable condition that affects my life in myriad ways, and calls for a variety of coping strategies, supportive treatments and living aids. It's a disability that I'm very lucky to have: if I had the next grade of it, I could be living a far less able life, or be dead by now.
The cause of my condition
EDS is due to gene mutation and is congenital, meaning I was born with it – and you can't catch it. Lucky you.
The collagen in my body isn't made correctly, by my own cells. Collagen is the main building block of connective tissues like tendons, ligaments and skin. (Remember from your fact books that skin is the biggest organ in the body?) Collagen is also abundant in cornea, cartilage, bone, blood vessels, gut tissue and muscles. Put simply, it's in basically everything. Hence, my entire body is fucked up in some way.
Ways you can't see, but I can very much feel.
An unusual syndrome
The 'S' part of 'EDS3' stands for 'syndrome', meaning EDS has a wide-ranging list of associated signs and symptoms that generally occur together – but there's no guarantee someone with it will exhibit all of them. Even those that have the same symptoms may be affected in wildly different ways: some find their symptoms cause them no pain or ill-effects...and then there are people like me.
What's up, Doc?
I went through my childhood with blatant symptoms – and no diagnosis, despite regular trips to the doctor. It took me going to university in London to have somebody say 'Well, that's not normal...', and I finally received my diagnosis (in the early 2000s) from the one specialist in the UK at the time.
Diagnosis was a lightbulb moment where suddenly, everything I'd experienced just made sense. To me, at least, and the specialist (apparently I am a beautiful textbook case) but nobody else seemed to have a clue. Most medical folk I've met to this day have to look up what it is when I tell them I have it, and its impact (and necessary support) is often summarily ignored thereafter.
It's only in the past few years that the available information on my condition has expanded – mostly due to internet forums and groups of sufferers coming together saying, 'You have this too? You understand? I thought I was the only one!'
What EDS3 means for me
Buckle up. Here are some of my symptoms:
I'm super flexible, or rather, my joints are hypermobile: the range of motion exhibited by my joints is far bigger than that of someone without the condition. My elbows and knees, fingers, wrists and thumbs go backwards, unaided. My hips are stupidly flexy. My ankles turn in when I stand. (Don't even get me started on my posture.) Dislocations, or partial dislocations, are a regular thing. Any activity that involves exerting pressure is likely to be difficult for me, if possible at all. Anything relying on the resistance of a joint's (normal) limited range of motion, cannot be carried out.
When I lie on my side, my ribs cross over and grate against each other in the middle of my chest. I'm talking about the opposing sides of my ribcage here.
My joints click all the time. I can (and regularly must) 'crack' not only my knuckles, but my finger joints, neck, elbows, shoulders, various parts of my back, my knees, ankles, toes, wrists, hips, and jaw. Parts of my hands and feet that don't even have joints crack too. (Nope, it won't give me arthritis. Yes, it provides a pleasant feeling of relief.)
My joints can lock in unusual ways, at totally unexpected times. This mostly affects my hands when it comes to gripping anything for a long time, and is especially troublesome when it comes to playing an instrument.
I get tired easily. Because of my joint laxity, my body's constantly expending energy just to keep a semblance of normality in the alignment of my joints. Hence, I have a tendency to 'spark out' at the end of an evening. One minute I'll be fine, the next minute I have to exit stage left, now. I'm not likely to stay out all night to party anyway, but often I simply can't. Other people are candles – I am a sparkler.
My individual joints get tired faster than other people's. Holding a pen for hours in exams, playing video games, or sewing are all abbreviated activities for me or very painful. Queuing (i.e. standing) for hours at a theme park is a no-go. Walking for a long time is something I need to be very fit to do, and a couple of solid days of it (say on holiday) will leave me bedridden for a morning, easily. On the other hand, sometimes I can't afford to take things at a leisurely pace – because that takes longer, and I'm running down every minute until my inevitable spark out. It's a delicate balance.
I have crappy proprioception: my innate knowledge of where my body is at in space and how much force I need to use to move it, is compromised. Or rather, I'm biologically clumsy, and have appalling balance.
I bruise easily, break easily, and heal slowly. I find bruises all over myself and have no idea how I got them. A sprain that'll take a few days to heal in others will take a week for me. Plus, because of my joint problems, I'm more likely to suffer sprains or injuries from my joints misaligning or losing my balance.
I scar easily, and it's different to how other people's scars look and feel. Mine often hurt, for years.
I have a lack of sensitivity to local anaesthetics – it takes a notably higher dose of those drugs to numb me, and longer for it to set in.
EDS brings with it a number of...very painful digestive issues, like IBS.
My heart rate – so high! When I get up, my heart rate massively increases (more than other folk) which can lead to some unpleasant cognitive stuff. When I work out, it's far too easy for me to work at a very high level, and become exhausted too quickly.
It all hurts. Quite a lot. More or less all the time. My pain level oscillates wildly and unexpectedly. Even with the best will in the world, and all the best self-care, sometimes the switch in my brain that says PAIN is flicked to ON and seemingly nothing can switch it back. Sometimes for days, and days include nights – nights when I'm not sleeping. Pain, both chronic and acute, are quite literally my bedfellows.
There are cognitive elements too. Due to how adrenaline production is off the chart in those who have EDS, flexy folk like me often suffer from anxiety. I do, and it can be quite a feat to stop my mind zooming when I'm trying to wind down.
There are other cognitive elements that mean, for example, to get specific things to really register sometimes I need to write things down. (Revising for exams is difficult when you take things in best by writing them out, but can't hold a pen for hours at a time.)
Guess who won't be having biological children? Yes, technically, I'm capable, but the bodily changes associated with pregnancy bring a fair chance of serious, and permanent, effects for me. I'm not going to choose to be (even more) differently abled for the rest of my life, so I won't be carrying any children. I choose myself over a possible someone that doesn't exist.
There's more but I'll leave it there.
It's invisible. You wouldn't know I'm bravefacing though chronic pain until I told you. Yes. It hurts – and it's only going to get worse as my body degrades with age.
Even with all this, I'm grateful to have what I have: my condition could be so much worse. I could be dead right now, but I hurt, so I must be alive. And while there's no cure for EDS3, there are a number of coping strategies, tools, supportive therapies and techniques that make everyday life better. Do-able. Good.
That's for another time. For now, I'm going to turn on my constellations, turn off the zoom of my mind and sleep. Sweet dreams, friends.