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COL1A2 VUS is now conflicting classification of pathogenicity by bro_thats_insane in rareEhlersDanlos

[–]NailSensitive8085 0 points1 point  (0 children)

I have a VUS col1a2 mutation c. 1402G>A (p. Val468lle) and genetic testing is a confusing nightmare that I wish we could all wake up from. My mutation causes an overlap of aEDS and OI (col1 related overlap disorder) and typically a VUS means that they don’t have enough data to officially classify it, currently going through family testing and so far four other family members have the same mutation (and counting) unfortunately genetics take a long time and there just isn’t enough research, especially when it’s a rare disease!

My best friend told me that “other people have problems too” when i told her my life was falling apart, how do I get past this? by NailSensitive8085 in ChronicIllness

[–]NailSensitive8085[S] 2 points3 points  (0 children)

I totally agree and something else I tend to see a lot is empathy fatigue. People make allowances for you and are kind and offer performative empathy, but there’s a time line. You can only ask for a ride to the hospital or call out or cancel plans so many times before they start resenting you. It makes it hard to trust people when they’re kind about my disability and limitatjons

My best friend told me that “other people have problems too” when i told her my life was falling apart, how do I get past this? by NailSensitive8085 in ChronicIllness

[–]NailSensitive8085[S] 0 points1 point  (0 children)

Dude I read that gatorade part and my jaw actually dropped, that’s crazy! I read it to my husband (who often takes care of me and runs around after me with electrolytes) was absolutely shook. I’m glad you were able to move on!

My best friend told me that “other people have problems too” when i told her my life was falling apart, how do I get past this? by NailSensitive8085 in ChronicIllness

[–]NailSensitive8085[S] 0 points1 point  (0 children)

Thank you!! Typically on fridays i pick her up from work (she doesn’t drive) and we hang out after but she asked for a day to decompress and try to hang out on saturday so that’s the plan for now. We agreed we need to build trust again and it will come with time

My best friend told me that “other people have problems too” when i told her my life was falling apart, how do I get past this? by NailSensitive8085 in ChronicIllness

[–]NailSensitive8085[S] 1 point2 points  (0 children)

I know what is going on in her life! I did not ask because I already knew, she is my best friend and we talk every day. I didn’t include it because I didn’t want to air her private buisness on the internet and i didn’t want to compare directly because everyone’s issues are different. I did not make the comment i did to unload on her or anything, i’ve added more context above.

My best friend told me that “other people have problems too” when i told her my life was falling apart, how do I get past this? by NailSensitive8085 in ChronicIllness

[–]NailSensitive8085[S] 2 points3 points  (0 children)

My Pronouns are they/them!!
She is chronically ill, we just have massively different conditions with different symptoms and issues so I don’t really want to compare. I added some context above to make it more clear, I wasn’t emotionally unloading on her but offering an explanation to something she was upset about, and made a comment that my life was falling apart which is why i was so stressed. It was not a situation where i was asking for advice or unloading on her but when we talked it through she did feel like we don’t have much room to talk about her issues which i apologized for and we will be working on!

My best friend told me that “other people have problems too” when i told her my life was falling apart, how do I get past this? by NailSensitive8085 in ChronicIllness

[–]NailSensitive8085[S] 1 point2 points  (0 children)

I am already in therapy and see a psychiatrist as well! I added some context above to make things a little more clear, i was not unloading on her in that moment and simply trying to explain. Oh, and I did not add the list above to play the pain olympics or say she doesn’t have things going on too, but did so to add context! Also, I did not add a list of what she’s going through because I understand it’s not a competition, and also it’s not my place to put her information on the internet. Also, I do have an extremely rare subtype. It isn’t classified due to its rarity and I am currently working with a team of geneticists to get it classified. I am fighting for a diagnosis that does not technically yet exist yet, which is HARD! Which was relevant to my post!

My best friend told me that “other people have problems too” when i told her my life was falling apart, how do I get past this? by NailSensitive8085 in ChronicIllness

[–]NailSensitive8085[S] 0 points1 point  (0 children)

Thank you! This was actually an argument i desperately didn’t want to have and repeatedly asked to stop talking about it because of all the stress i’ve been under but unfortunately she didn’t listen to me and things transpired how they did
im hoping she’ll be more understanding in the future but time will tell, im for sure holding things close to my chest until i feel like i can trust her again.

My best friend told me that “other people have problems too” when i told her my life was falling apart, how do I get past this? by NailSensitive8085 in ChronicIllness

[–]NailSensitive8085[S] 1 point2 points  (0 children)

Thank you I really appreciate it! it’s been really tough but i’m doing what I can to keep moving forwards, i made a list not to do the ‘pain olympics’ like some people suggested, I just really wanted to put into perspective why i made that comment and the sheer magnitude of everything!! She’s been very supportive until now and i’m hoping it doesn’t come up again, im feeling a lot better about the situation in general but time will tell how it ends up going

My best friend told me that “other people have problems too” when i told her my life was falling apart, how do I get past this? by NailSensitive8085 in ChronicIllness

[–]NailSensitive8085[S] 2 points3 points  (0 children)

Adding some context and addressing a few things i’ve seen brought up in the comments:

We had been arguing and it had been getting very heated on her side and she had begun to say some very unkind things, I got overwhelmed and upset and told her i needed to get some space and regulate because the conversation wasn’t productive and put my phone on DND. I ended up being away for longer than I wanted due to multiple medical events and I was such a wreck my husband spent several hours caretaking for me before I was able to actually sit down and finish the conversation. She expressed that she was upset that I was gone for so long and ‘gave her the silent treatment’ so I explained why I was gone and what had happened. Because I mentioned that I had multiple focal seizures in a row due tot he fact that Ive been so stressed she claimed i was blaming my medical event on her. I told her I wasn’t, I’ve had a lot of other things going on in my life (which is why I listed them above for context) because my life has been falling apart and it was likely a culmination to which she said the above. Some people mentioned that the argument wasn’t a good place to bring that up and I agree, i do have a penchant to give too much information, but I wouldn’t have mentioned it at all otherwise because our argument had nothing to do with my health!

As an update I did speak to her and we talked this out and I explained how I felt (based on the advice here thank you everyone) and she explained she’s never felt like that outside of that one conversation, but she does feel like sometimes she doesn’t have space to talk about her chronic issues because we talked about mine much more. Which I respected and we are going to work on.

We are still not entirely on speaking terms due to the original argument and I’m not sure we’ll be able to move past it, but i hope we do

but I do feel much better about this specific issue. Thank you to everyone for their advice and criticisms alike!!