11 Things About EDS I have Resisted Sharing On Social Media

Hello everybody, it's Marie-Belle Helene and thank you very much for dropping by. Haven't been on here for a while as I have not been that active, and if I have, it's been elsewhere, obviously.

Anyway, an article I came across the other week, on The Mighty, 19 Things People With Ehlers-Danlos Syndrome Want to Post on Facebook, but Don't I found the article very interesting as it discussed mainly throughout the guilt that Ehlers-Danlos patients feel for speaking their mind openly and how they feel others may react.

Something that has really stuck to the stigma of this illness is that a lot of doctors do/have thought at some point, that it is all in our heads and the fact that we find it hard to, or feel like a burden when we express ourselves unfiltered only keeps the problems all in our heads and bottled up. A lot of people don't quite understand how we are affected. This could be because of a lack of empathy, or perhaps it also has something to do with us, not feeling like we're being listened to, or feeling as though our venting is burdensome to others.

Personally I don't post that much about how grim my day to day can be, even though to those who are friends with me on Facebook, I might appear to chat non stop about it. Really, the odd article I share or the odd rant I have is nothing. It is a fraction of my hypermobile life.

So it has inspired me to write my own list of things that I have resisted sharing on social media/saying aloud. Sometimes I haven't posted them because I have been in too much pain to do so. Sometimes I haven't posted them because I feel bad for how others have to put up with me being ''negative'', sometimes I haven't posted them because I am telling myself that I shouldn't- that I should ignore my illness and it will go away with Positive Mental Attitude.

1. Toes

What the fuck, that thing happened with my big toe again. I fell down the stairs losing my grip and my big toe folded over completely now the whole foot is really sore and I find it hard to walk to work. Fucking toes.

2. Bleeding

So much bleeding. It's crossed my mind that I'm having a miscarriage, but no, this is just my usual period. Menstrual cups are handy because you can actually measure how much blood you've lost. At times I've been changing the 15ml mooncup every 45mins. No, not just to be on the safe side, but because I felt the squelch (yep, the 'TMI' part right there) I think it's got something to do with rupturing of something... A lot of women worry about miscarriage, healthy pregnancy etc and hope for an easy labour. I hope that if I ever become pregnant that baby holds on really really tight inside me until I say so. Everything feels likely to slip out of place, including my uterus. The fact that a woman bleeds from down there shouldn't be embarrassing, for women with or without EDS.

3. On Motherhood

More about reproduction. I feel guilty often. In the Ehlers-Danlos community there is a division. A lot of people are against having kids, because there is a 50/50 chance of passing on the gene. I have always wanted loads of kids, long before I was diagnosed. Part of me believes that if I do have a child and they are also hypermobile I will never forgive myself for the pain they will endure, but on the other hand, I will be most suitable parent for that child, having had my own first hand experiences and knowing the symptoms to watch out for. Doctors have often advised me against starting a family, and I feel that they want to get the easy way out, by culling our people rather than finding answers and solutions.

4. First World Problems

People who post on social media ''Ugh, never drinking again I feel like crap''. Yeah, they do my fucking head in. People with self-inflicted injuries feeling oh so sorry for themselves pisses me right off. Makes me feel like posting something along these lines ''Oh crap, I just turned over in bed and hurt my hip- never turning over in bed ever again!!''.

5. Pain, Excruciating Pain

I feel like my thighs are falling off my hips. Jittering with cold makes it worse. Getting up to put heating on/light fire would make it a bit better I think, but how the hell am I gonna do that in this state? Catch 22.

6. Fatigue

Another catch 22. I'd post you all a photo of my lunch but I was too exhausted to actually make/eat lunch. I am however proud that I have gone up a jeans/dress size again as loads of my clothes were hanging off me the way that my joints hang off myself.

7. Hopes and Dreams

I do hope to drive one day but hate having to disclose why I can't drive right now to all the people who ask (Tonic Clonics have me banned from the road right now). Aside from the seizures I worry about my shoulders and my floppy thumbs being able to steer, but I still have hope that one day I'm gonna go for a wee spin down to the shops. I think about what car I will drive (some nice wee zuped up Volkswagen with a gorgeous paint job and a really comfy seat). My Mama advises me not to drive. She obviously cares a lot. I just want to be able to know how. It's not like I'm gonna be out speeding about and doing donuts- I have enough trouble with my joints dislocating as a passenger when the driver is turning a small corner.

8. ''All in the head''

As much as I hate that a lot of medical professionals think it's all in the head I do agree to some extent. I think much of it is allover the affected areas (which yes, does include physically the head i.e. seizures, migraines, headaches, shortsightedness) and a lot of it can be exacerbated by our outlook on things and the lack of support we have. Again, the fact I ought to repeat myself and disclose 'what's wrong' with me, reinforces the issue- until people have educated themselves and can recognise the issues but not tell me I'm a lost case. Some doctors tell you that you're grand, others tell you they know what EDS is and that basically, you're screwed. Neither of these attitudes are purely helpful. It is important for medical professionals to make us feel good about ourselves. I once had a doctor who had an amazing sense of humour, and an ability to laugh with me (rather than at me) about my issues unlike other GP's who can barely make eye contact. The latter GP gave me a sick note and had me on my way, whereas the previous one had time to listen to my problems and advise me on a human level. This is really important because even though it's not all in our heads, that doesn't mean that we don't suffer mentally, too.

9. PIP

I have been turned down for the financial help that I need, not once but twice. I have been interrogated and asked questions like ''well, how can you do ____ if you have problems with your joints?''. I don't know how I can muster it sometimes to be honest, perhaps it's patience, persistence and determination, but I do. Just because I can, doesn't mean that it does me any good or is pain-free. I'm really good at pretending I'm not in pain because I know that yapping about it won't help and I have been humiliated enough times that all I want to do is hold it together like I used to.

10. Plain Gross

Not sure what is up with my tummy. Acid reflux and indigestion again recently and I just went to sit down and take a piss but felt the sudden urge to puke so swirled myself round really quickly and hurt my hip in the process, all while holding pee in and getting the boke out.

11. Gentle Pat on The Back

I used to post a lot on social media. I also used to type and write a lot for enjoyment and work. This past while with my thumbs being as annoying as my big toes and the general difficulties of my day to day, I haven't been able to do so. But this morning I used my persistence and my determination to type a tonne of stuff here and I am proud of myself, even if it took bloody ages. Now, time for a nap.

Are there any things that you wish you could share on social media but fear how others may respond? Let me know in the comments!