u/LaJunta92

I just said a few days ago I wanted to stay positive and move forward without dealing with past problems involving public perception of hEDS and POTs. I’m feeling a little cranky because my left clavicle is currently trying to get loose and my hip is a bit loosey goosey too. But that aside, I was thinking all was well with the world so to speak.

But a family member mentioned that I’ve got a variety of problems due to my connective tissue condition. She was seeking comfort and or minor advice?

Anyway, the person she spoke with prophesied that she has ALS and that’s why I have hyper mobility problems. And that if she doesn’t believe enough she’ll die, because ALS is fatal. Or at least that is what she thinks they meant. She’s also insecure about whether she believes hard enough just to be faithful as it is.

(Please bear with me, I know how that sounds in more secular circles and grounded-faith communities.)

She does have ALS-like symptoms due to unrelated health problems, including slurred speech/life long impediment.

I’ve got a lot of symptoms due to hypermobility that would easily be mistaken for a nerve degenerative disease. My worsening stretchy joints and subfluxations make it seem degenerative.

So apparently I’m now at fault for her being bullied. Or at least her perception of bullying. She’s older than me and should be able to handle this sort of thing. But I know I’m mean, if I just ignore it. I don’t really know how to address this matter maturely?

She means so much to me. And I’m a person of faith too. But like, uh, I don’t have ALS. She doesn’t have ALS. I hope it blows over, but she’s made it clear she wants to either retaliate or avoid this person or do something else.

And I didn’t start this. I’m just trying to survive. I didn’t have anything useful to say, except like… there’s other people to make friends with besides that one. Even though apparently they’re involved in an evangelism course she really likes.

Honestly, I guess forgiveness, not fixating, or finding others when all else fails, is how she ought to go. But between the two, I unfortunately figured there’d be a sort of problem/incompatibility. I just figured they’d work it out (without making it “my fault”).

Though this person does seem like the sort that also expects her life long health problems to vanish if she has enough faith… she’s going to be very upset/guilty if that doesn’t happen either, possibly (again).

This is dumb, but if you have advice that’d be great? Sorry this isn’t even about my hypermobility per se.

I personally feel like I’m “me” for a reason. It’s not a personal failure (unless I’m not exercising wisely or did something “too” hard and dislocated something.)

She on the other hand, I don’t know? I don’t understand the necessity to seek validation by them at this point? I personally wanted to be accepted “as is”. But I don’t know what she wants from this drama that’s started? Or if there’s anything to do but hope it fizzles out in a couple days and doesn’t turn into something more (past drama never ended well though).

Also, if you’re that person I’m crypticly referring too. I’m sorry. I figure you tried to help in your fashion and while I do not agree and do not condone the reckless diagnosis of fatal conditions; I’m not going to advocate retaliation against you either.

Any advice or creative approaches you would like to share in regards to ATVs and having a connective tissue disorder or something relatively similar like arthritis or vagus nerve dysfunction, or all the above?

I have issues with loose and fragile connective tissue which results in joint instability and in nerve dysfunction. This causes pain. However I have the opportunity to borrow an ATV and use it on a fairly large portion of flattish land. So I thought I'd ask. And while I'm not super excited at the moment it kind of sounds like something that might be fun if I can reduce my discomfort?

I know my health conditions being what they are, I should probably stick to like audiobooks for a hobby. But between being allowed to borrow an ATV and the fact that there's a huge outdoor bouldering area just south of here, I'm considering maybe adapting these sports. I don't know if bouldering will actually be that doable for me but it's literally like right there, as I’m by the park?

I decided to delete them. I’m happy that people were willing to help me with advice but I feel like I may have been adding to the negative experiences here. I’ve had a rather unique history in the sense of health and trying to get actual treatment. But that’s also been specific to the region I was born in (an absolute mess in regards to medical care if you weren’t in a wealthy district, and a mess there too at times).

I moved recently, so I’m going to try as best I can to move forward instead of thinking about my childhood. I’m sorry I vented so much and I know it probably didn’t make sense for most living in more “modern” regions. I’m not referring to rural life, more like third world (literally psychics and witch doctors) and I don’t really want to rehash that experience.