Anyone else feel really sad when acce... - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK
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Anyone else feel really sad when accepting their limits?

emilyhedgehog
emilyhedgehog
6 Replies

Hey guys,

So in July I diagnosed with POTS and in August I got formally diagnosed with hEDS after years of being ignored by a lovely geneticist. This has been great as issues I have had with my stomach which have been written off for years as IBS or soft tissue damage or the ever present oh you are just stressed are being looked into properly. It does help they have got a lot more noticeable as soon as I hit my twenties.

I am now 24. Every time I have to ask for accommodations, or use a mobility aid I either feel terribly sad or like a fraud. There is no in between.

I am going to the EDS conference in Edinburgh next weekend and I just booked my assistance and to Mexico in December because winter is rubbish for my pain and fatigue. And now I feel a mix of a fake and sad.

I am also going to apply for a blue badge later. My POTs and low blood pressure is great when I am sitting down now and the medication my cardiologist prescribed has helped with brain fog at my job but as soon as I start standing again I feel drunk. Which is awkward when I am on my own and I stop dead in carparks... or forget why I am here and have to check my list. Not to mention the crushing fatigue or the pain in my joints on bad days which are more frequent now.

Anyone alternate between feeling like a total fake and shouldn't be making such a fuss and then sad about the whole thing? On one level I know logically that the more things I get help with now and the less damage I do while I am young the more chance I have to not end up like my Grandfather and by extension my mother (although I seem to have more symptoms that she does weirdly). On the other hand my Dads attitude to all my complaining about pain, sore feet and feeling faint was that I was unfit and faking to get out of things and I needed to toughen up.

My Dads attitude is bad and I know it though. He has this blood disorder that can affect the eyes and cause blindness if not treated quickly and he knowingly left it on Monday hoping it would go away risking his sight.... So I guess it is a bad coping strategy.

I applied for a part time post graduate course in Law and that is exciting but if I didn't have hEDS/POTS (probably MCAS and my neck keeps cracking and trapping nerves that lead to my arm) I would have liked to have gone to medical school. That makes me feel sad.

This has been a bit of vent? By final thoughts are, is this imposter syndrome from years of being treated like a hypochondriac. Anyone else feel alternatly like they are faking or sad that they need the help in the first place?

Thanks for reading if you made it this far.

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Luckyedq

Hey Emily, I feel sad too. I haven't been properly diagnosed with eds yet but it is sounding likely that I have it I think. I can't do the things I used to do without being left in very bad pain, some days find it hard to walk. I've not had any real help or advice on how to manage it. Hopeful that some advice and support will come once I get the diagnosis.

Not being taken seriously when you have all these symptoms certainly left me feeling really confused and full of doubt as to whether it was real or if I'd just made the whole thing up. I've been reading through this website today though and I see others are in the same position so at least I know I'm not alone.

That is great news though about your course. I'm sorry that you didn't get to go to medical school, but you are still doing something that you can and should feel proud of. I'm trying to learn to adjust my expectations and become more accepting of reality, it's not been easy though.

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Mandrea1976

Im sure what you are feeling is brought on by others reactions. What you are experiencing is our very complex EDS. Fight it and dont give up. You are too young.

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cyberbarn

Ah, impostor syndrome... I am doing a PhD and that hit me full on. But I have met (online, I am a distance learner so never go into my university) plenty of other post graduates who are the same. And thinking about it, it is better than being subject to the Dunning-Kruger effect! I think impostor syndrome, as long as we keep it under control, makes us work hard to make sure we are aware of those areas that we have to work on, but at the same time, shouldn't allow us to forget that we do hold more knowledge than others.

I am 58 now, and have failed at plan A for my life (professional classical musician), plan B (med school) and plan C (retire from banking at age 30 with enough money to retrain as an occupational therapist). I lost count of the 'plans' but I am determined to make this one, the PhD, to work.

Don't be worried about contacting the university disability people to let them know about things, if only so that if you have a flare up they will be understanding.

And as for the sadness, embrace it. it is part of you and will keep you going. To deny it or bury it will only cause problems. Look at it as trying to find the right place in life for yourself. It took me until my early 50s to figure a good place for myself, you have time!

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1footinthegrave

Hi, I see you going through, a lot, if have already looked on YouTube, check out Dr d. Discoll, she a lot old YouTube info, as Doctor you would it would easy for her it took 10 yrs and cardiovascular, neurologist, and genetist to get full diagnosis, one of probably is Pots, myself I have H/EDS, with some Marfan, AF. Have pacemaker now. I hope this you to inpower to investigate on YouTube good luck

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OTPOTS

Thank you for posting this, I think many of us who were told for many years there is nothing wrong with you......it's all in your head....have problems when they are then diagnosed because it is hard to shake off labels. I thought a diagnosis would make those labels drop off but they haven't and make things very hard. I give myself a hard time, struggle to take meds, struggle to pace myself or receive help from family and friends. I am currently off work with nerve pain in my arm and I feel like everyone thinks I'm putting it on/faking it. Be kind to yourself, try and get referred for some CBT I you feel it might help. Feeling saddness and denial are part of the grieving process. Grieving careers, lives we thought we would have, lost or changes in relationships. We all have to raise as much awareness of these conditions. Hope you enjoy the conference in Edinburgh....my friend is also attending xxxxx

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KellyInTexas

Hello Emily.

Might I suggest you google Dr Sanjay Gupta, a cardiologist in York? He’s absolutely brilliant with POTS / Dysautonomia.

In fact, on 12 oct of this month he gave a short lecture on it . It is on you tube. It’s very good for newly diagnosed patients- it will help you with your management.

He also has a face book page with clips you can find where he gives little blips and tips on pots and management thereof.

I also have POTS. ( due to a mix of auto immune diseases that belong to the connective tissue disease group. ED is just one of a few. APS- Antiphospholipid syndrome is primary- lupus, Sjögren’s, chronic Inflammatory Demyelinating

Poly neuropathy, ... )

He echos what my cardiologist says. But I dr Gupta does a much better job at it!

I found this video link on a website for APS( Hughes Syndrome.) A fair number of us also have Ehlers Danlos.

ghic.world/

There is a Facebook for GHIC and last week I think the YouTube link for dr Gupta was put on.

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