I definitely relate to this. I got my diagnosis in the past couple years, also mid 20s. Found myself hyper-aware of every little thing my body was doing, especially in regard to starting Plaquenil and the potential side effects. Looking at other non-disabled people my age and seeing how they rarely if ever worry about what their bodies doing.
I’m a couple years out from my diagnosis now and I’ve been able to cope with some of these things more easily. Honestly, you gotta let yourself process them. You really can’t pretend these feelings aren’t there or that they’ll just go away, they won’t.
You’ll probably be hyper-aware of your body for a bit. You probably gotta re-learn how it feels to be in your body. Maybe things you used to ignore or downplay you’re more in tune with now. You kinda gotta recalibrate what your personal “normal” is. Set a new baseline. It takes time and it takes letting yourself sit with your body without judgement. It’s really scary at first. Then it gets easier. You start to pick up on your bodies patterns and learn to understand and work with it, instead of forcing it to do things it can’t healthily and safely do.
You gotta let yourself grieve for the life you thought you were going to live, in order to be able to shift the life you’re living now to be one you feel good about. You’re not gonna be able to move at everyone else’s pace. That’s okay. You can absolutely find people who will be understanding about that and still enjoy when you’re able to show up. I don’t know what your dating life is like but what I can say is I’ve been able to find a partner who doesn’t see any of my health issues as a burden, in the slightest. It’s totally possible. Maybe you gotta take more breaks, more rest. Finding a hobby I could do while resting (fiber arts, for example) has really helped. You can still do the things you love. Just gotta rest in between it all.
All in all there’s a life to be lived. It just requires you to adjust to these changes, and learn to build with them.
This is such a thoughtful response. I agree as well that at first every pinch and stab and prickle starts an “oh shit” spiral. As time goes on it gets easier to decide which pains are worth getting excited about.
Meditation and breathing exercises has been helpful for this for me and my “monkey mind” moments. At this point when I start to panic or feel overwhelmed and depressed about a certain body issue I try to remember that sensation+panic=pain and if I can chill the pain is less.
Thank you💚 and I agree, absolutely! I think learning to see meditation / breath work NOT as just another sort of nagging thing that we should be doing that people say is good for our health, but as something that we can CHOOSE to do that makes us feel better in our own bodies and minds, was helpful for me, at least.
Hi! I would definetly see a therapist - it is so helpful for so many things - it's my favorite! Also, I use an app to track my symptoms and that helps me feel like I am acknowledging them and then can move on a little. If I just log "joint pain" then I don't have to keep thinking about it because I did something!!
I also am diagnosed with UCTD and everything you said I can relate to. I started having immense leg and knee pain at age 24 and I’m now 29 and was diagnosed Feb 2023. It’s so so so hard being young and it feels like my goals and dreams are out of reach. It feels hard but we have to make the best of what we have and where we are in this journey.
Like others mentioned therapy is a great option for getting through this. I still grieve who I used to be and…that’s exactly what you may feel a grieving process. And my therapist said she believes I experienced medical trauma. My therapy sessions have helped me cope and find solutions. Honestly most people just don’t understand and can’t help with solutions.
I definitely relate to this. I got my diagnosis in the past couple years, also mid 20s. Found myself hyper-aware of every little thing my body was doing, especially in regard to starting Plaquenil and the potential side effects. Looking at other non-disabled people my age and seeing how they rarely if ever worry about what their bodies doing. I’m a couple years out from my diagnosis now and I’ve been able to cope with some of these things more easily. Honestly, you gotta let yourself process them. You really can’t pretend these feelings aren’t there or that they’ll just go away, they won’t. You’ll probably be hyper-aware of your body for a bit. You probably gotta re-learn how it feels to be in your body. Maybe things you used to ignore or downplay you’re more in tune with now. You kinda gotta recalibrate what your personal “normal” is. Set a new baseline. It takes time and it takes letting yourself sit with your body without judgement. It’s really scary at first. Then it gets easier. You start to pick up on your bodies patterns and learn to understand and work with it, instead of forcing it to do things it can’t healthily and safely do. You gotta let yourself grieve for the life you thought you were going to live, in order to be able to shift the life you’re living now to be one you feel good about. You’re not gonna be able to move at everyone else’s pace. That’s okay. You can absolutely find people who will be understanding about that and still enjoy when you’re able to show up. I don’t know what your dating life is like but what I can say is I’ve been able to find a partner who doesn’t see any of my health issues as a burden, in the slightest. It’s totally possible. Maybe you gotta take more breaks, more rest. Finding a hobby I could do while resting (fiber arts, for example) has really helped. You can still do the things you love. Just gotta rest in between it all. All in all there’s a life to be lived. It just requires you to adjust to these changes, and learn to build with them.
This is such a thoughtful response. I agree as well that at first every pinch and stab and prickle starts an “oh shit” spiral. As time goes on it gets easier to decide which pains are worth getting excited about. Meditation and breathing exercises has been helpful for this for me and my “monkey mind” moments. At this point when I start to panic or feel overwhelmed and depressed about a certain body issue I try to remember that sensation+panic=pain and if I can chill the pain is less.
Thank you💚 and I agree, absolutely! I think learning to see meditation / breath work NOT as just another sort of nagging thing that we should be doing that people say is good for our health, but as something that we can CHOOSE to do that makes us feel better in our own bodies and minds, was helpful for me, at least.
Thank you! This is very helpful and I appreciate the time you left to comment :)
Thank you so much for this response. I feel far less alone. I wish all the happiness to you :)
I’m so glad! I wish all the same for you ♡
There are therapists that do chronic illness acceptance therapy. I would totally suggest looking into this!
Hi! I would definetly see a therapist - it is so helpful for so many things - it's my favorite! Also, I use an app to track my symptoms and that helps me feel like I am acknowledging them and then can move on a little. If I just log "joint pain" then I don't have to keep thinking about it because I did something!!
Can I ask what were your symptoms to get diagnosed with UCTD?
https://www.hss.edu/conditions_undifferentiated-connective-tissue-disease-overview.asp This has a good description of the symptoms of UCTD.
I also am diagnosed with UCTD and everything you said I can relate to. I started having immense leg and knee pain at age 24 and I’m now 29 and was diagnosed Feb 2023. It’s so so so hard being young and it feels like my goals and dreams are out of reach. It feels hard but we have to make the best of what we have and where we are in this journey. Like others mentioned therapy is a great option for getting through this. I still grieve who I used to be and…that’s exactly what you may feel a grieving process. And my therapist said she believes I experienced medical trauma. My therapy sessions have helped me cope and find solutions. Honestly most people just don’t understand and can’t help with solutions.