OpenTube

I’m So Tired of Trying to Get Better | Chronic Illness Vlog

Dynamic Vibrance

283 views

Another drive to Denver. Another medical appointment. Another round of explaining my body, waiting for answers, and trying to navigate the weird red tape that comes with chronic illness.

This time, I went in for a hypermobile Ehlers-Danlos syndrome (hEDS) evaluation. I met the clinical criteria, but because I also have an acquired autoimmune/connective-tissue disease, my diagnostic pathway required family-history criteria that I couldn't meet — so I left with a diagnosis of Hypermobility Spectrum Disorder (HSD) instead.

The frustrating part? The treatment is essentially the same.

And I think that's what this vlog ended up really being about: not one diagnosis, but the sheer exhaustion of trying to get better.

Drive. Appointment. Testing. Waiting. Results. Another appointment. Another drive. Repeat.

By the end of the day, I was so depleted and overstimulated that figuring out where to get something to eat felt like an impossible task — which might honestly be the most accurate representation of chronic illness life in this entire video.

If you're living in your own version of medical Groundhog Day right now, I hope this makes you feel a little less alone. ❤️

8 Comments

@dynamicvibrance Creator 1 month ago

I want to clarify something because I think it’s important: I actually felt heard during this evaluation. My frustration isn’t really with the provider — it’s with how exhausting it can be to navigate diagnostic criteria and the medical system when your body doesn’t fit neatly into one box.

I met the clinical criteria for hEDS, but because of my acquired autoimmune/connective-tissue disease, I also needed to meet additional family-history criteria that I couldn’t satisfy. So for now, my diagnosis is HSD — and thankfully, the treatment recommendations are essentially the same.

I think I was just emotionally DONE by the end of this day. Hence why finding somewhere to eat nearly became my villain origin story. 😂🥪

If you’ve experienced the endless appointment → testing → waiting → results → repeat cycle, I would genuinely love to hear how you cope with the burnout of it all. ❤️

@jenniferw1595 4 weeks ago

My friend- watching some of your videos make me think you have ME/CFS. A lot of people with ME/CFS have co-morbid conditions like hEDS, POTS, gastroparesis etc.
The things that made me think of you having ME/CFS are the fevers and shut downs during a flare.

@anthonyolivier705 3 weeks ago

Your journey is going on a new path made by you and your own will and time and even slow moments vor hard ones don't let it be just use to go through it and reinventing yourself as new and go on the way to the wind tells you to feel and be healed and better in and out

I don't know if means much too but you look in good shape abd in harmony 😊

@debiargust6596 1 month ago

I have similar symptoms. I have hEDS, POTs, and currently being accessed for MCAS. I think you should check on these three conditions. They usually show up together. 🌸

@Jennifer-c3q6r 4 weeks ago

I’m in the exact same boat. I was diagnosed with HSD at 50, but despite a strong history of knee dislocations on both sides of my family (my mum and both my grandmothers who are no longer with us) I was only diagnosed with Hsd. Sounds like you have a great doctor if she’s going to treat you as hEDS anyway. Unfortunately my rheumatologist was hopeless and he diagnosed me said I don’t need to see him again and just to see a physio. This is despite multiple severe gastrointestinal issues and FND, visual snow, migraines, raynauds and central sensitisation. I’m supposed to go and see an immunologist for possible MCAS but the doctor fatigue is real and I just can’t put myself through that right now. You definitely have a lot of patience to go through all of this. I’m just so sick of being dismissed by doctors I can’t do it. Australia also seems to be well behind in managing EDS/HSD and FND.

@lifewithspiritover50 4 weeks ago (edited)

Hey, Kayde!🥰 When and if you are ready, it’s okay to stop trying - and just BE. Being in rest mode is not giving up but giving your body, mind, and spirit a chance to rest and rejuvenate. You will naturally receive the information, guidance, and downloads you will need as you continue on your health and wellness journey. It’s okay for things to happen over time. Be well, friend! And don’t forget to have fun! 🌻🫶🏾

@firstlast-js5yw 1 month ago

First, I need a link to the pink cup, it’s perfect size for hot tea on the go!! Next, like we talked about, we are professional patients and I’m sure you’re on auto pilot for that long drive😵‍💫 I’m glad that your getting answers, but, it often feels like 2 step forward and 1 step back. I so wish you could go to Duke, they have truly changed the trajectory of my health and life! Love you dear friend, let’s FaceTime soon❤

@jenniferw1595 4 weeks ago

I think you may have Long Covid. You are female, in the correct age range, and if your symptoms started 2020 or later (or got way worse after 2020)- you may want to consider it.