Things That I Wish People Considered About #EhlersDanlosSyndrome: A Thread. #neisvoid

So, #EDS has officially come out of hibernation. October - February is when I experience, on average: more flare-ups, more severe symptoms, and more ‘bad’ days.

I reckon my spoons are halved, at the very least.

So, what exactly does that mean in terms of symptoms? A lot, actually, but those outside of the situation (such as those who do not live with me, and see it first hand) don’t usually consider more than ‘pain’.

They’re not wrong! They are also incredibly lacking in understanding.

So, yes, chronic pain is a very real and very debilitating symptom. This isn’t just ‘ow, that’s really painful’. This is, “<insert gibberish here>” because you can’t form actual words.

It’s your shoulder dislocating in the night from rolling over. It’s getting up in the morning, only to fall into the nearest wall because your hip isn’t where it should be. It’s writhing in agony as your spine simply refuses to cooperate with your existence.

It’s balancing “how much breakthrough pain relief do I take?” against “how much do I want to be present throughout the day?”

Because, with continuous and prolonged use, morphine just reduces you to a zombie.

So, chronic pain is one symptom. As is chronic fatigue which, despite what some might claim, is not ‘being really tired’. Having a bad night’s sleep is not chronic fatigue. Accidentally having a nap is not chronic fatigue.

Chronic fatigue is when even trying to engage your brain is like wading through sludge. Basic functions - eating, drinking, moving, talking, being ‘present’ - are either barely plausible or utterly impossible.

Don’t worry though, you can just sleep!

Only, you can sleep for 16 hours and still wake up feeling as though you’ve not slept at all.

Or, alternatively, you can’t sleep at all.

Of course, then you have to consider that each case of #EDS presents differently. Some people have a different type, some have overlaps, some have more severe symptoms, and so on. I have #HypermobileEhlersDanlosSyndrome, previously classified as Type III.

What does that mean? Well, dear reader, it means that the gene(s) which cause my particular type are unknown. You cannot have a genetic test. You have to hope that you’re seen by a knowledgeable rheumatologist, in order to be diagnosed.

Once finally (after 24 years) being diagnosed with this particular type of #EDS, there are a great many facets to then address. Is it effecting more than the joints and the muscles? How severe are the symptoms? Have any comorbidities manifested?

Suffice to say, my medical file states far more than “Hypermobility Ehlers Danlos Syndrome.”

For me, #EDS encompasses: rheumatology, orthopaedics, cardiology, gastroenterology, urology, gynaecology, occupational therapy, physical therapy, neurology, nutrition and dietetics, ophthalmology, pain management clinics, rehabilitation units, psychology, and so much more.

So yes, I have #EDS, but I also have: #posturalorthostatictachycardia, #delayedgastricemptying, #SIBO, bladder complications (awaiting a diagnosis, yay!), eye complications (awaiting a diagnosis, yay!), psychological trauma resulting from medical experiences, etc.

Why does that matter? Because it’s all linked. If one symptom is worse then others likely will be, too. For example, after a YEAR of being classed as stable by my gastroenterologist, I have just been prescribed new medication to try to get a handle on brand new symptoms.

It doesn’t ever stop. People ask why I advocate so much for research into #EDS, and it’s because outside of my core group of consultants I am still accused of faking it, being dramatic, or just not ‘handling it very well.’

To that last pleasant comment, I’d like to see anybody ‘handle it well’ when the strength you have built up over the warmer months - to the point where you can walk a mile, yes a MILE, without pain - is taken from you overnight.

Or, when the stamina you’ve built up so that you can actually walk such a distance is reduced to... no longer being able to walk up the stairs without needing a break halfway.

There’s so much to #EDS, and a thread isn’t ever going to be long enough. I haven’t spoken on the treatments, how it’s changed my life, the impact on my quality of life, the genetic prevalence in any potential future generations, and so, so much more.

So, I’ll summarise: I may be ‘more than my illness’ - a phrase I hate, by the way - but, my illness is far more than anybody ever truly considers.

Almost seven years after being diagnosed, it is still misunderstood on a very fundamental level by medical professionals and the general populace.

So on behalf of myself and anybody else who has had to cope with unfounded, frustrating, and sometimes hurtful assumptions of what #EDS is: just ask us.

There’s one condition, though: only do it if you’re really willing to listen. We just don’t have the spoons to tell you twice.