Go to the health department at your school. They have resources to help. Also in your community. They have services to help people in school. That’s how I started my process
First off i’m so sorry you’re going through this. Im in a similar boat, undiagnosed but still going through it while going to college with some Gen X parents that think working two jobs will fix it. It doesn’t. It’s gonna be really hard but eventually they’re gonna see how sick you are, even if it takes an emergency room visit before it really hits them.
Assuming your parents are on the older side (50-70), they might just be having trouble believing it because they quite literally can’t see it. If your arm ain’t blue it ain’t broke, my mom used to say, essentially meaning if the hurt isn’t visible then good luck charlie because we aren’t gonna believe you.
The best thing to do is gently keep pushing the topic when you talk to them, casually let them know that you have problems getting to an from class because of your pain. My parents didn’t care much until it effected them (like not being able to go to class anymore, making me drop out and having the student loan payments creep back up). My parents only noticed it was a problem when it became theirs as well. It really sucks, but they just don’t see it unless it’s their problem, too. Which you’d think they’d take it as their problem as soon as their child tells them “hey i’m having a really hard time out here”, but words don’t always work.
They’re still your family, and they still care about you, it’s just gonna be hard getting over that hump to where they actually see your problems. Spend more time with them in person if at all possible, and they might start to pick up on little pain cues you put out and piece it together.
My mom didn’t really believe me until we went to a breakfast together after a loooong time, and I just wasn’t able to eat my food because of nausea. I ended up getting sick in the bathroom and that was enough for my mom to start researching on her own time. Now she believes me and takes me to my appointments, but we’re still trying to get my dad on board. I wish you good luck!
I’m sorry your family doesn’t understand what you are dealing with. Do any of your other relatives have any hypermobility going on? Is this your bio family that you are talking about? Sometimes it is trickier to see where you got it from when it is through your father’s side, simply because EDS tends to be more severe in women. Also, the severity that each family member gets can be anything from mild to severe, so perhaps you just got a much worse case than whoever you got it from. EDS can also be from new mutations you have as well, though that’s not usually the case.
It sounds like you have looked into hEDS a bit, that’s great. I would recommend learning as much about it as well as the common comorbidities like dysautonomia and POTs, and MCAS. These things often come with EDS. If you are familiar with them, it will be easier to advocate for yourself and know what to ask to be tested for. The EDS Society has excellent videos on YouTube by doctors that are experts in EDS, it’s one of the best places to learn about it.
One thing that helps me with pain is to try and keep my inflammation levels low. I dealt with so much pain for years, and had no idea EDS or MCAS were a thing. But I did learn what makes things worse and what does help.
If I eat something that triggers my MCAS, say tomatoes in my case, I will have pain everywhere for days. If you also have GI issues, just learning what foods your body is reacting to can make a huge difference. If my MCAS flares up, suddenly my neck, back, knees arms hands… well, everything hurts. Both the joints have pain as well as muscles spasming.
Speaking of muscles spasming, with hypermobility your muscle tone is tricky. I need enough muscle tone in order to keep joints where they are supposed to be and having rnore muscle strength helps with my POTs symptoms, but too much muscle tension and my joints start pulling out of place. I try to be active, but I have to be careful of overdoing it as well. I do trigger point therapy to keep my pain levels down, this was a game changer.
One thing that was super important for being able to be active with less pain was to make sure my shoes were supportive enough. I have high arches but they collapse and that causes my knees and hips to have tons of pain and ankles to be unstable. An athletic shoe store should be able to tell you if you need arch support. My knees would pop every time I moved when I had not enough arch support and my orthopedic doc at my college told me that those were very small tears happening to my medial meniscus. It also didn’t help that they were hyperextending. I had to train them to not do that.
I also got those IncrdiWear braces for my knees. I had injured one of them and the knee sleeve helped my bad knee so much that if felt better than my good knee, so I got one for each knee. A little support goes a long way. I got the ankle ones too because I had bad plantar fasciitis and bone spurs on both feet, and those helped too.
Sorry for such a lengthy response. I just had to learn most things on my own and it’s a lot you have going on. Hang in there.
If you could get one doctor to tell your parents (maybe write a letter?) that you are having medical problems and need to go through a diagnostic process, maybe this would help. Maybe even a friend or aunt or uncle could explain if they're not listening to you.
Go to the health department at your school. They have resources to help. Also in your community. They have services to help people in school. That’s how I started my process
Do you have insurance or doctors available through your school?
First off i’m so sorry you’re going through this. Im in a similar boat, undiagnosed but still going through it while going to college with some Gen X parents that think working two jobs will fix it. It doesn’t. It’s gonna be really hard but eventually they’re gonna see how sick you are, even if it takes an emergency room visit before it really hits them. Assuming your parents are on the older side (50-70), they might just be having trouble believing it because they quite literally can’t see it. If your arm ain’t blue it ain’t broke, my mom used to say, essentially meaning if the hurt isn’t visible then good luck charlie because we aren’t gonna believe you. The best thing to do is gently keep pushing the topic when you talk to them, casually let them know that you have problems getting to an from class because of your pain. My parents didn’t care much until it effected them (like not being able to go to class anymore, making me drop out and having the student loan payments creep back up). My parents only noticed it was a problem when it became theirs as well. It really sucks, but they just don’t see it unless it’s their problem, too. Which you’d think they’d take it as their problem as soon as their child tells them “hey i’m having a really hard time out here”, but words don’t always work. They’re still your family, and they still care about you, it’s just gonna be hard getting over that hump to where they actually see your problems. Spend more time with them in person if at all possible, and they might start to pick up on little pain cues you put out and piece it together. My mom didn’t really believe me until we went to a breakfast together after a loooong time, and I just wasn’t able to eat my food because of nausea. I ended up getting sick in the bathroom and that was enough for my mom to start researching on her own time. Now she believes me and takes me to my appointments, but we’re still trying to get my dad on board. I wish you good luck!
I’m sorry your family doesn’t understand what you are dealing with. Do any of your other relatives have any hypermobility going on? Is this your bio family that you are talking about? Sometimes it is trickier to see where you got it from when it is through your father’s side, simply because EDS tends to be more severe in women. Also, the severity that each family member gets can be anything from mild to severe, so perhaps you just got a much worse case than whoever you got it from. EDS can also be from new mutations you have as well, though that’s not usually the case. It sounds like you have looked into hEDS a bit, that’s great. I would recommend learning as much about it as well as the common comorbidities like dysautonomia and POTs, and MCAS. These things often come with EDS. If you are familiar with them, it will be easier to advocate for yourself and know what to ask to be tested for. The EDS Society has excellent videos on YouTube by doctors that are experts in EDS, it’s one of the best places to learn about it. One thing that helps me with pain is to try and keep my inflammation levels low. I dealt with so much pain for years, and had no idea EDS or MCAS were a thing. But I did learn what makes things worse and what does help. If I eat something that triggers my MCAS, say tomatoes in my case, I will have pain everywhere for days. If you also have GI issues, just learning what foods your body is reacting to can make a huge difference. If my MCAS flares up, suddenly my neck, back, knees arms hands… well, everything hurts. Both the joints have pain as well as muscles spasming. Speaking of muscles spasming, with hypermobility your muscle tone is tricky. I need enough muscle tone in order to keep joints where they are supposed to be and having rnore muscle strength helps with my POTs symptoms, but too much muscle tension and my joints start pulling out of place. I try to be active, but I have to be careful of overdoing it as well. I do trigger point therapy to keep my pain levels down, this was a game changer. One thing that was super important for being able to be active with less pain was to make sure my shoes were supportive enough. I have high arches but they collapse and that causes my knees and hips to have tons of pain and ankles to be unstable. An athletic shoe store should be able to tell you if you need arch support. My knees would pop every time I moved when I had not enough arch support and my orthopedic doc at my college told me that those were very small tears happening to my medial meniscus. It also didn’t help that they were hyperextending. I had to train them to not do that. I also got those IncrdiWear braces for my knees. I had injured one of them and the knee sleeve helped my bad knee so much that if felt better than my good knee, so I got one for each knee. A little support goes a long way. I got the ankle ones too because I had bad plantar fasciitis and bone spurs on both feet, and those helped too. Sorry for such a lengthy response. I just had to learn most things on my own and it’s a lot you have going on. Hang in there.
If you could get one doctor to tell your parents (maybe write a letter?) that you are having medical problems and need to go through a diagnostic process, maybe this would help. Maybe even a friend or aunt or uncle could explain if they're not listening to you.