An Official Diagnosis…

As I count down the days of the week left before my third knee surgery, I find myself in limbo once again.

 Today, I finally had my appointment with the Rheumatologist I’ve been waiting to see since I booked, maybe 4 months ago. It was underwhelming, to say the least. He had been recommended through an EDS forum as being one of the only people on the Gold Coast who could give an official diagnosis for EDS, especially Type 3 (Hypermobility – my type). I’ve seen countless doctors, physios, occupational therapists, chiropractors and podiatrists who all agree that I have HEDS, not least of all my orthopaedic surgeon who operated on me, my father and brother, but somehow they are all unable to give me that one elusive diagnosis. Only the rheumatologist or geneticist can (and there’s no gene for this type of EDS, although apparently they will still do the testing for ~$2K), and he….well, I’ll run through what happened.

First: he did the exact same physical test (Beighton score) that all practitioners have done on me, with one major exception: he did a bafflingly condensed version with no follow-up questions, despite having my entire medical history in front of him in writing, as well as knowing I’m about to have a third patellar stabilisation surgery on my knee. He basically had me pull my thumbs back to my arm (tick), hyperextend my elbows (tick), lightly touched my fingers a couple of times (??), asked me to touch the floor with my hands (tick) and seemed surprised that it was so easy, then had me lie on the table and touch my knee, tried weakly to make my legs hyper-extend (the one that has had two surgeries now doesn’t hyperextend for the exact reason I had the surgeries – something you’re supposed to count in the score), then made me lift my legs in the air and move them around slightly. After which he drew a stick figure of the supposed points of the score – one of which was in the groin, er, sorry, what point is that???? – and counted that I made 5/9 on the Beighton score. Every other person I’ve seen has confirmed I’m 8-9/9, but fine, I guess that still qualifies.

Then he said he’ll write a letter confirming I have Benign Joint Hypermobility Syndrome, aka Hypermobile Ehlers-Danlos Syndrome. Which…is not correct anymore, albeit in the controversial new diagnostic criteria, which has its own severe shortcomings. Oh, and for fibromyalgia; something I thought was difficult to diagnose in the first place. I really don’t care at this point if I have fibromyalgia or dysautonomia or Raynaud’s or whatever else in tandem with EDS, because although they may be difficult to deal with, the bane of my life is the dislocations I’ve had since literal birth (born with a dislocated hip) and subsequent daily pain and fatigue, deterioration of joints and the lack of management or belief by others in something that is clearly demonstrable. I’m not taking away the experience of others with these issues, however in my case, having had three major surgeries already in one area for this specific reason and most likely several others in the future, this, to me, is the most urgent and legitimate cause for any concern or want for diagnosis.

When I asked “Ok, so what now?”, having been told that seeing a rheumatologist is the be-all-and-end-all, he said I can take an anti-epileptic or antidepressants to help me sleep, however after some discussion I basically prescribed myself some Melatonin instead. He said I can do the most basic exercise, like hydrotherapy, pilates, and surprisingly yoga (a big no-no for hypermobility). If I want to get some kind of disability recognition or special consideration for uni, I have to go from a rheumatologist back down* to a physio for a physical examination. And that was it.

[*I don’t mean any disrespect here; physio has done me the most good out of anyone, barring my last knee surgery, I’m merely highlighting the fact that it was built up so much to see a Rheumatologist to get the ultimate help, and instead he directs me right back down to the first point of contact to make any kind of progress. ]

I don’t even know what to say right now. I’m not sure what I expected, but I thought at least there would be an “Okay, this is a clear case, let’s do a proper Brighton criteria to make sure, I’ll give you the proper diagnosis, and this is how we manage it and where we can go from here”. Not: “Umm…yeah…ok…so, you could do some yoga and take some supplements to sleep, ok? Thanks for coming in”.

Literally any other person, including occupational therapist, physio or GP could have diagnosed me (and have) in a fraction of the time, and for a fraction of the cost. But since they don’t have the title of Rheumatologist, even though they use the exact, and in this case more thorough, diagnostic criteria, there is absolutely no validity. It really feels like a system designed to keep you from getting the help you need and have overwhelming evidence for, for the arbitrary reasoning that seems to be the same as how the new criteria for Hypermobile Ehlers-Danlos was created in the first place, and which has been denounced by pretty much everyone in the community, minus a handful of people.

I empathise with everyone who has gone through this process, and worse. One of the most debilitating things about EDS is not just the chronic pain from dislocations that result in anxiety, depression and other systemic issues, but the fact that as an ‘invisible illness’, doctors tend to diagnose such conditions in a lackadaisical, haphazard manner. Even the Ehlers-Danlos Society itself doesn’t send a clear message to a majority of its sufferers. When your main advocacy group, and the medical community don’t understand the issue enough, then what hope do we have in getting the general population to understand our plight?

What the Heck is Hygge?

Higgledy-piggledy? Higgy? Hickey?

Hygge is actually pronounced “hoo-guh”, and it’s a Danish concept. The closest description in English would probably be somewhere along the lines of cozy/cuddly/rustic. Imagine being curled up by the fire in some fuzzy socks with a cup of hot chocolate while there’s a thunderstorm outside. That’s pretty much an encapsulation of Hygge.

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Dim lighting, comfort food, comfy clothes and soft fabrics, and snuggling up? Do all Danes have EDS? LOL, bad jokes aside, this sounds like my perfect evening…or perfect anytime, actually. I’m obsessed with candles, super soft textures, warm lighting, fire (not like, in an arson way, as in; I wish I could have my own fireplace O_O) and smooth music…not to mention committing carbocide every now and then :/. It would be my dream to live in a treehouse in the woods and to cook a hearty, homemade Christmas feast for all my closest friends and family. Imagine doing that after playing in the snow all day – oh my!

It really might be the perfect lifestyle for those with chronic pain/illness. Everyone talks about minimalism and de-stressing and decluttering and all that, but really, it’s been there all along. Get back to basics and live like your grandparents, or even great-grandparents. Ditch the laptop/phone for a book (ok that’s probably my most difficult obstacle), invite your friends around to help cook or bring their own addition for dinner, turn the TV off and have a games night. Low-energy (I was going to clarify in terms of spoons, but I guess it is low energy because you’re not using so much electricity too?), low-cost, social quota and I can wear my uniform of a hoodie & leggings with my socks in the shape of ice creams while I eat, drink and be merry? If that’s being an old man, then call me Grandpa, because I am so here for it.

You might think it sounds boring or old fashioned, but Denmark is home to some of the happiest people in the world. Treating themselves to a pastry, cycling most places, leaving work on time and achieving that work/life balance, while spending time with family really seems like the recipe to happiness. Not to mention getting away from blue light from screens, which can really mess up your circadian rhythm and continue that low-grade stress cycle, which is a real killer.

It’s a weird catch-22: I feel like I don’t have enough energy to do stuff, but I still want to be productive or at least do something, so I watch something or read on my laptop or phone. But I might as well just sleep if I am that tired, because I’m still connected and on call to the rest of the world. There’s just no escape or switching off. It’s like the opposite of meditation…and I should know, because I am extremely guilty of that insomniac life. It’s all about quality, and to be honest, if I’m awake, but I’m just procrastinating and wasting my time, is that really worth doing over having a quick nap and then being able to get back up and at it? ‘Stay awake for the sake of being awake’ should not be a mantra. It’s all about quality. Quality time with loved ones, quality food that you enjoy eating – even if it’s not strictly ‘healthy’, energy spent on quality entertainment, as opposed to not really doing anything while surfing the net or watching reality TV. Nowadays people can’t even have a holiday because you can get roaming on your phone overseas, and you can keep up on Facebook with every minuscule nuance of your kind-of-friends-but-we-haven’t-seen-each-other-in-two-years life, instead of going away, having an adventure, and having something to really talk about when you get back, instead of “Oh, did you hear about…” “Oh, yeah, I saw it on Facebook” *crickets* (guilty, guilty, guilty).

But learning about Hygge feels like someone is saying: “Hey, it’s ok to unplug and get away from it all. It’s ok to relax, it’s ok not to be available at all times, and it’s ok to treat yourself!” And I think that’s an important reminder, especially for people with chronic illness, who feel guilty about what they can and can’t do, or push themselves because they don’t feel like they’re doing enough. Treat yourself like a friend, and have a hyggelig (hygge-ly) time 🙂

For more information, I recommend reading or listening to The Little Book of Hygge by Meik Wiking (he should know: he works for the Happiness Research Institute in Copenhagen!)

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