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Moderator of r/ehlersdanlosArchivedStickied post

Hey everyone,

The community has made it clear over and over that memes are becoming overwhelming to the sub. To counteract this, memes will ONLY be allowed in the posts made by the automod on Mondays and Fridays.

Feel free to also use those posts as a place to vent/ask questions/whatever else.

Additionally, we ask that you report any memes which are submitted to the sub outside of the approved posts.

Please reach out with any questions, comments, or concerns.

EDIT: I want to make it clear that the "free talk" aspect of the weekly threads is completely optional. People are still welcome to make individual posts about any questions/rants they may have. I simply wanted that to be an option for anyone who wished to do so.

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Moderator of r/ehlersdanlosStickied post

Please use this thread to post any of your Ehlers-Danlos related memes! Due to user demand, memes will no longer be allowed outside of weekly posts.

Please also feel free to share any questions/general discussion you have which may not be big enough to warrant their own post.

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Crossposted by7 hours ago
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Posted by
hEDS, POTS
7 hours ago

I have really bad fatigue at the moment. As soon as the weather breaks in autumn I get this fatigue. It lasts all autumn and winter and it usually ends around April but depends on the weather.

I always used to attribute the feeling in winter to having seasonal affective disorder as my mother suffers with it and I have been told it can run in families but I don’t get depressed like she does.

I’m angry, frustrated and bitter I can’t do much at the moment but I’m not depressed. I’ve had depression before and it doesn’t feel like this, anyone else?

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Does anyone else have extreme doubts about their diagnosis? I have hEDS which makes me feel like I might be making everything up. I’ve had a history of being medically neglected and now in my early twenties I got diagnosed. I’ve been having symptoms of other conditions that are commonly comorbid with EDS but I’m scared I’m blowing everything out of proportion. I don’t know how to convince myself that I’m not making it up and that I’m allowed to be sick...anyone else deal with this or something like this and have suggestions

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I'm not exactly sure how to phrase this, so apologies if it isn't the most cohesive thing.

I've been having issues with my heart for the past couple of months. The specifics aren't super important but the basics are that it's beating fairly irregularly (pauses every 15-30 seconds) and it isn't explained by any of my current diagnoses.

I know that I need to go to the doctor but I just really do not want to deal with this. For the first time in years, my life doesn't revolve around my health and I'm worried to open this can of worms and lose the normalcy that I've worked so hard to acquire. I guess some naive part of me feels like it's easier to ignore my reality.

I think the other part of it is I'm a bit traumatized by my history with doctors. I dread the idea of being the "mystery patient" again and getting passed around from doctor to doctor. I just want to focus on being a college student but my genetics didn't really afford me that luxury.

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What is your best tip or best lesson from your experience as an EDS patient when talking to medical professionals? How do you walk the line between “well-informed” patient and “bossy demanding lunatic hypochondriac”? How do you talk to a medical professional who isn’t familiar with everything that comes with connective tissue disorders, but whom you find yourself sitting across from at an appointment nonetheless? Do you have an “elevator pitch”? Things like this. I know I could definitely learn from the experiences of others because I keep misstepping somehow, I think.

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