Not sure how I can provide for her

[yeehaw]

Hey, guys. I know that none of you guys are trained medical experts here or anything like that, but I am just in some need of advice on what to do.

So, my girlfriend has a bad condition called vascular EDS (http://ehlers-danlos.com/vascular/). She's just turned 16, and her condition just seems to be getting so much worse. She often tells me that she is in a permanent state of pain, and her painkillers do not work yet she is ineligible for higher rated medication. Her joints dislocate often and she has bad spasm attacks that'll leave her in hospital for a couple hours to recover - if she ever needs help from anyone trained, she has to drive 2 hours to see the closest specialist trained in the area.

She has such a decreased quality of life because she can't do many of her passions anymore, like skateboarding or rugby. She is an amazing drawer, but she can't do it anymore because of the constant pain in her wrists/hands or her wrists dislocate. I feel that in a few years she'll be confined to a wheelchair which she will detest heavily. It's highly unlikely that she'll be actually able to hold up a decent job in the future.

Before we were even together, we were best friends, and she told me about this. I promised that I'd be there for her and look after her. But when she has worse days, I have absolutely no clue what to do. It's not as if I can tell her that it's going to get better - it's just going to get worse from here.

I guess I just needed to rant my frustrations about this more than anything. But is there anything I can do to help me relieve the stress and anxiety that I get - it's not her fault but whenever she has a bad day I feel like I'm at my lowest. She often laments that she hates herself, she wants the pain to be over, and she doesn't understand why she was born this way. She's still my best friend no matter what and I just want her to have a different aspect of life. But I have no idea how to get her to see the positives.

[ClaraWho]

I'm sure you might get some helpful posts here, but nothing that is going to really be enough long-term. My advice is to find a therapist, otherwise you aren't going to be able to fully be there for her. As you say, her condition is only going to get worse, and that will lead to conflict between you both. At least with therapy you are dealing with your emotions as they occur, rather than trying to pick up the pieces after it all has got too much.

I don't envy your situation, it sounds horrible. Good luck to you both,

~ Clara

[bentheplayer]

Oh dear. I kinda cringed when I read that ur gf has type 4 Ehler-Danlos. Btw it is more of a type 4 than a stage really. Once can’t move between “stages” of ED and type 4 is generally regarded as the most serious as it affects blood vessels which causes the vessels to split open and organ rupture. You can read more about it here (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1971255/). Some of the info might be superseded but this gives a pretty good overview on type 4 E-DS. As you already know, this is genetic and there isn’t really a cure.

Tbh based on what you described, the main thing you can do for her is to support her and try minimize the impact of EDS on her life. Basically cherishing the time and activities you guys can share cos it may not be for long. During my hospital doc shadowing experience, I came across a young patient who had a terminal congenital heart condition who is in a similar condition as your friend. In her own words, she said that every day is simply a blessing to be enjoyed with the company of the people she loves. Life can be short and cruel but there is nothing stopping you both from enjoying it to the fullness at the moment. Acceptance of such diseases is usually very difficult and it seems that she hasn’t accepted it yet. Perhaps you could try to help her move on and focus on things she enjoy and can still do?

Actually if your friend is seeing a specialist clinic, perhaps you both could consider therapy sessions? It might be useful especially when even adults who are more emotionally mature have great difficulty dealing with such raw emotions of fear, anger and possibly depression. It is said that there are 5 stages people go through when they find out they have a chronic illness - denial, anger, fear, grief and acceptance. If you think that she is stuck in the first 4 stages, therapy should help a lot. Only with acceptance can she find inner peace and optimism.

[yeehaw]

Oh dear. I kinda cringed when I read that ur gf has type 4 Ehler-Danlos. Btw it is more of a type 4 than a stage really. Once can’t move between “stages” of ED and type 4 is generally regarded as the most serious as it affects blood vessels which causes the vessels to split open and organ rupture. You can read more about it here (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1971255/). Some of the info might be superseded but this gives a pretty good overview on type 4 E-DS. As you already know, this is genetic and there isn’t really a cure.

Tbh based on what you described, the main thing you can do for her is to support her and try minimize the impact of EDS on her life. Basically cherishing the time and activities you guys can share cos it may not be for long. During my hospital doc shadowing experience, I came across a young patient who had a terminal congenital heart condition who is in a similar condition as your friend. In her own words, she said that every day is simply a blessing to be enjoyed with the company of the people she loves. Life can be short and cruel but there is nothing stopping you both from enjoying it to the fullness at the moment. Acceptance of such diseases is usually very difficult and it seems that she hasn’t accepted it yet. Perhaps you could try to help her move on and focus on things she enjoy and can still do?

Actually if your friend is seeing a specialist clinic, perhaps you both could consider therapy sessions? It might be useful especially when even adults who are more emotionally mature have great difficulty dealing with such raw emotions of fear, anger and possibly depression. It is said that there are 5 stages people go through when they find out they have a chronic illness - denial, anger, fear, grief and acceptance. If you think that she is stuck in the first 4 stages, therapy should help a lot. Only with acceptance can she find inner peace and optimism.

Sorry about that - I've cleared the discrepancy as it was a misunderstanding on my part :)

There are times, like today in fact - where she is constantly down because she describes that the pain is the worst it's ever been - a sure sign that it will get worse from here.

She's currently been signed up for a clinical trial (along with 4 other vascular EDS patients nationwide) on some new medication that should "over time form another layer over her heart" to protect it slightly more from it rupturing, but it takes a long time and she's not sure if it will work. The doctor explained to her that it could make the risk less, or heighten the risk - like mentioned they aren't sure if it's going to work.

She's still in the confusion stage, I'd say. She really doesn't understand why it's happening to her at all and she feels like she's done something to deserve this condition - something purely genetic and through no fault of hers, yet she still blames herself for it.

She struggles to see the good things - because they all used to be things that she was able to do, like being outside, doing skating and surfing and contact sports, she adored them and it used to make her so happy. But now she can't do those things and it feels to her as if slowly bit by bit the things she loves are being taken away from her. Whenever she spends a day socialising (walking a mild-moderate distance, if that) she has to rest for the next 2 days because her muscles and joints are in copious pain.

I just feel like she turns to me when she's in the worst points and the fact that I can't make it go away is quite terrifying to me.

[Anniebanannie]

Do you feel that you can ask her parents what you've asked us here? They're in the same position you are. But they may know things that you don't and be able to suggest ways you can respond to her. Please don't feel that you're all alone in this.

[yeehaw]

Do you feel that you can ask her parents what you've asked us here? They're in the same position you are. But they may know things that you don't and be able to suggest ways you can respond to her. Please don't feel that you're all alone in this.

Unfortunately, I don't think I can - put it this way, her mother is trying to break the 2 of us up because it's an LGBT relationship, and she isn't happy with the 2 of us being together at all, and we barely ever see each other as it is and she restricts talking times, which makes me feel even more that I can't help her. Say if she has a bad episode in the night and she needs me, I can't be there for her. It really isolates me from her even more and it puts more strain on both me and her.

[Just JT]

Pain sucks. Especially when there's no end to it. But I'll side with the others who suggested therapy. Mostly for nigh of your sanitys. It's not an easy road

As far as helping her physically, and I don't know where you live or what the laws are. But I'd consider the quality of life as being the most important thing. And I know with what I've been through (and not to minimize her pain, there's no comparison). But smoking some weed does help. Sorry if some find that bad advise. But if being there for her helps, so she knows you care, and can rid her of at least some pain, even short term, and she's ok with it, I'd go for it

But also just let her know your there for her. Don't let her see you getting down about it. Bring those feelings here. If she sees you down about it, it'll only worsen her feelings.

Talking is huge

[Anniebanannie]

Unfortunately, I don't think I can - put it this way, her mother is trying to break the 2 of us up because it's an LGBT relationship, and she isn't happy with the 2 of us being together at all, and we barely ever see each other as it is and she restricts talking times, which makes me feel even more that I can't help her. Say if she has a bad episode in the night and she needs me, I can't be there for her. It really isolates me from her even more and it puts more strain on both me and her.

Oh, I was hoping that wasn't going to be the case. I'm sorry that it is. :( Are there support groups for this illness? Maybe you can get some ideas from them. You're such a great SO for being so supportive and not giving up.

[yeehaw]

Pain sucks. Especially when there's no end to it. But I'll side with the others who suggested therapy. Mostly for nigh of your sanitys. It's not an easy road

As far as helping her physically, and I don't know where you live or what the laws are. But I'd consider the quality of life as being the most important thing. And I know with what I've been through (and not to minimize her pain, there's no comparison). But smoking some weed does help. Sorry if some find that bad advise. But if being there for her helps, so she knows you care, and can rid her of at least some pain, even short term, and she's ok with it, I'd go for it

But also just let her know your there for her. Don't let her see you getting down about it. Bring those feelings here. If she sees you down about it, it'll only worsen her feelings.

Talking is huge

Hey man, thanks for the recommendation but weed is completely illegal in the UK. I don't even think medical marijuana is a thing either. Dang, we're so behind

She does say that me talking to her and being there for her really helps her feel less scared and calms her down and takes her mind off things. I've given her little things of mine that she can use to remember me by too, like a hoodie or bracelet, although it sounds kinda cringe it really does help her out.

I do try my best to hide the negativity from her as much as I can, because then it's the both of us acting in a bad manner so I usually have to act as the better stronger one in order for her to feel a little more confident.



Oh, I was hoping that wasn't going to be the case. I'm sorry that it is. :( Are there support groups for this illness? Maybe you can get some ideas from them. You're such a great SO for being so supportive and not giving up.

Thanks :) I haven't really looked around that much at support groups - I'll give it a shot :) I doubt there's going to be many close by IRL, but there may be forums on the matter. Thank you!

[bentheplayer]

Here (https://www.ehlers-danlos.org/patient-support/your-local-support-group/) is a link that might connect you to local UK EDS support groups. Tbh there really isn't much you can do other than hugs and kisses. Its all about reassuring her and being there for her. It would be great if you could help her accept her condition which is obviously gonna be difficult given that her ability to do the things she like has been so rudely taken from her. If you were in her shoes, won't u feel the same way too? I know I would. Clearly she likes your company so make the best out it. We can't change the situation we are in but we can change the way we react to them.

[Just JT]

Sounds like to me yiur doing about all you can do for her. Just being there, being her friend, talk and listen....even if you really don't wana hear what she says. Just being there is all you can do to make here happy.

Yeah bud is pretty legal here in different ways. And it's helped me forget my pain and take a break from all the prescribed meds that can cause problems to. But if it's illegal then.... good luck on that topic.

Keep us up to date on how yourvdoing ok?

[anima1998]

The most long term was to fix your problem would be to move to a german country like austria, german or switzerland where you have a free insurance when you have a job in that country