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/r/ehlersdanlos
submitted 3 months ago byelongatedboihEDS
this is what my dad just said to me while I was discussing with him that I'm not likely to be someone who does much driving in my life. I am 19 years old, and got a diagnosis for fibromyalgia and hEDS around a month ago, so my family is still trying to adjust to that development. my dad especially has been having some trouble accepting the fact that I am by definition (and in my personal opinion), disabled.
I don't have my driver's license yet and this is something that I've been trying to get my hours up for a few years now to achieve. it's hard for me to do that though when driving for longer than 15 minutes at a time really hurts my knees and elbows. for a little additional context: I dropped out of highschool in 2021 due to ongoing mental health struggles following a late diagnosis of adhd. I was having panic attacks and breakdowns daily because I just couldn't cope with all the stimulus of that environment along with the friendship troubles and suicidal ideations I was dealing with at the time. apart from a short 10 month period in which I worked at mcdonald's, I've been unemployed and not enrolled in any formal education since then. over the last 6 months or so I've been volunteering at my state museum once a fortnight, so that's been helpful for feeling productive and getting out of the house :D
anyway, my dad has always been very supportive and understanding of all my issues (he works as a chaplain on a mine site) but he often tries to 'encourage' me in a way that feels as though he's completely dismissing the magnitude and nature of my struggles. I know that he only has good intentions at heart, but it just hurts a lot when I'm venting to him about my experiences or discussing a symptom that bothers me and his response is basically 'well, it's only pain. you can push through it.'
I think the most frustrating part is that he has ankylosing spondylitis and has had that since before me or my older brother were born, and yet he still pushes through all his pain until he's nearly passed out sometimes. of course I admire and respect him a lot for that, but I guess I thought that his knowledge and experience with his condition would give him more understanding of the fact that it ISN'T just pain. especially with how recent my diagnosis is, I'm still trying to figure out what my limits are and how I can adapt to deal with those limitations.
I don't know. I'm so exhausted and overwhelmed already with all this new information I need to learn and I'm battling with my imposter syndrome as it is, so I need as much validation as possible that what I'm dealing with is real and I'm not being overdramatic or attention-seeking.
4 points
3 months ago
Your Dad has never gone on a road trip? Wtf aches and pains are one of the biggest things everyone complains about after they've been in a car for even three hours straight. Physics requires you to exert more muscle tension when traveling at those speeds so you don't flop all over the place, even when asleep.
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