How Ehlers Danlos Syndrome Affects My Life

My heart goes out to all my fellow Spoonies ❤

Resources:

Timestamps:
00:00 Intro
00:30 Goals for the video
01:21 Thank you
04:08 Hypermobile Ehlers Danlos Syndrome (hEDS)
05:17 How they diagnose hEDS
06:43 hEDS genetic test is coming!
07:14 Mast Cell Activation Syndrome (MCAS)
08:10 How EDS triggers MCAS
08:37 Postural Orthostatic Tachycardia Syndrome (POTS)
09:06 How MCAS, EDS, and POTS are connected
09:43 List of my personal symptoms
11:27 Beginning of my story
11:49 Early symptoms: asthma, allergies, insomnia, sensitivity to light and sound
13:13 Early symptoms: TMJ
13:33 College symptoms: weak immune system
14:17 College symptoms: pain & GI problems
14:36 Worsening insomnia
15:00 Back pain in the service industry
15:47 20’s hip pain, clicking, and sticking
16:07 Hilarious videos of me after surgery
16:55 Traumatic fainting from POTS
18:11 Funny POTS story
19:30 Back injury
24:43 Struggling w/ internalized ableism & shame
25:39 How my social life is affected
36:33 Emotions: validation and hope
37:55 Emotions: grief
40:02 Emotions: fear
40:34 Kids & IVF
41:41 The spoon theory
42:39 Treatment plan
46:24 Outro

Music: Epidemic Sound

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FTC: This video is not sponsored. Some product links are affiliate links that allow me to earn a small commission through your purchase. Some products were received in PR. This video is not meant for children

[ashleyellendawson]

It feels like your not sick enough to be disabled but on any given flare day your like … yep nope this is terrible. I feel like I gaslight myself on good days that all of my things don’t exist ….. probably picked that up from the millions of dr’s who gaslight me before. It’s an awful cycle.

[katjoyky]

I also have EDS. “I just pushed through it” really hits hard for me. Developed Mitral Valve prolapse and heat sensitivity at 15. Had jaw reconstruction at 16. Developed asthma at 17. My left thigh was numb for months at 17. Developed severe allergies in my 20s, which I still have. My ligaments around my tailbone were pulled during childbirth and my hips hurt for years afterwards. Finally diagnosed in my 40s. Horrible right hip pain now and tachycardia. My left arch in my foot is a constant problem. Amazing how much we push through. Thanks so much for sharing your story. ❤❤❤️

[iwillstom]

You articulated perfectly what it’s like to be on the “milder” end of a disability. It’s almost surreal listening to you because it’s like hearing my own thoughts voiced back to me.

[taryndaly]

Fuck it hit deep down when you mentioned feeling stuck between disabled and able-bodied, and how it leaves you without a sense of identity. To live like that is so isolating, and I can't describe how relieved I felt to hear another person express what's been weighing on me every second of every day.
Thank you, I really really needed this...

[jivalucia]

Hey zebra sister, I have to thank you for being so raw and real about how life is with these conditions! You said it ALL! I've been wanting to start a youtube channel since I got diagnosed to help people overcome the challenges of EDS and invisible illness and the stigmas around what type of people we are. I believe that we are some of the most misunderstood people out there and we all deserve better treatment and more understanding and support of how EFFED up it living with this. My doctor told me I should really consider adoption instead of creating my own family one day because I could "pass this terrible disease down to your little ones and you wouldn't want to be responsible for that...." That was one of the hardest things I've ever had to hear and knowing the reality of how lonely my future might be without kids. I wasn't aware until recently that passing it on to your child is a mindfuk because there's a chance your child could be perfectly chance they might not be ok., or they might be ok then suddenly develop symptoms :( My doctor told me you can only pass down the type you have, but still. Still grappling with all the losses.

[macmaccuillinn]

Ditto, young lady. As a child, my mother, who was a licensed medical professional, called me a hypocondriac and stupid. Cried myself to sleep every night from the pain.
I'm now 62 yrs old and only just being diagnosed; 2 yrs ago.
In my early 40's I passed out and fell down two flights of stairs. No broken bones, but I pulled every tendon, muscle, nerve and my spinal cord was severed. Was told I'd never walk again. Today, I walk normally. Spinal cord is completely healed.
Thank you for your courage to vlog this. You've giiven me something to bring to my docs attention and I will be sharing your video with my PT doctor, who is now learning more about these medical conditions
So much more I could tell..

[thomascrews]

I saw your You tube and was really impressed! We have 500 pots patients! We use autonomic anesthetic modulation with safe anesthesia agents with truly life altering symptom modulation! Thomas M Crews MD

[freshcoastrider]

Praying for you kid. Im 38 and was just diagnosed with MCAS. The regret about the life you could have lived if you were diagnosed sooner is definitely mutual. My journey has taught me a lot of harsh realities about the medical system, what family means, who my friends are. You feel trapped in your body, and its ungodly expensive to get well. This process is teaching me a lot of things about my health that I never would have paid attention to. Its a hard journey, but it makes me feel less alone when someone like yourself explains in detail what its like. Thank you.

[DoubleDivergent-zzcc]

I have these exact diagnosis - which I received at 55 years old. Constant pain… I look “normal”… but barely function some days!!!
I sent this to my functional doc. You are so well spoken - I have used your podcast to show people in MY life how life feels ! THANK
You never mentioned if people viewed you as a hypochondriac. That’s how much family “sees” me..
Excellent, well done!! Thank you!

[GeodesicSoul]

I never comment on videos, but when you mentioned how you feel “really behind”….that hit hard for me. I don’t have the same illnesses as you, but I do live with a chronic illness that no one can see. I carry intense shame with this too - being “not enough” and “behind in life”. It’s strange and invalidating and frustrating. But it’s a reality that we should, as humans, be TAUGHT about from a very young age - compassion and empathy. I’m so sorry you’ve been suffering this way. I’m sorry the medical community is often not attentive enough to REAL feelings. I hope your new path and new diagnosis brings you some peace and comfort.

[heatherk]

I think this is a really good example to demonstrate why we all need to be practicing more empathy. It's easy to make assumptions about people based on how they appear on the outside. But whether it's an invisible illness with physical symptoms, mental health, neurodivergence, etc. people do a lot of "masking" to fit in and/or cope, which is an exhausting feat. (I say this from experience.) Thank you for sharing your story!

[DutchessLady]

Woahh. You described me to a T 🥺 I was diagnosed TODAY with Lupus and EDS. 16 months ago I diagnosed with Celiac, where I had to diagnose myself and begged for weeks for the blood test, which was positive. At that moment I started advocating for myself and all 6 of kids who were diagnosed with Celiac last week. I know they are experiencing the same symptoms you and I both had as kids. This is only the beginning. You said it so well that it's an invisible disease, and people truly don't understand how badly it affects our everyday lives. No one in my life gets it and it fucking sucks and hurts so bad. Thank you so much for sharing your story, it helped so much after an awful and exhausting day 💚

[lj]

Please be more on yourself. You have chronic conditions. You have suffered greatly. As a cancer surviver and RN my heart goes out to you. Please know that others who may judge you are not worth a moment of your time. Praying that you feel better as you make changes you need to to feel the best you can. Take care of yourself❤️

[strawberryiesberry]

first of all, thank you for sharing. it was super interesting to hear. secondly, a very small comment that stuck out to me was that you've gotten comments saying you appear slow. this is very fascinating to me, because you dont really come off slow in a general sense at all, but you have a very natural demeanor to me.

i feel like people who make those comments have become way too used to the hyper-energetic way that people online speak. this is something more or less of a persona people put on to increase their likeability and engagement or whatever. personally, i find it a little tiring to listen to in every single video (and its just getting worse when it comes to tiktok, shorts, etc). i actually find your calm demeanor really nice and natural to listen to and it doesnt make me feel like youre putting on a hyper fake persona for the camera. thanks for being you!

[Shawnsbox]

You are the female version of me, minus fainting. I was diagnosed with EDS last week by the head of the EDS Society, but none of my family or even most doctors believe me. I just had my 27th surgery. Most of them failed. I’m currently in so much pain in my neck I can barely move, contemplating the ER but I know it’s a waste of time. I went 13 times the last 4 years and got no answers. I think I’m going to die soon. I’m getting my ass kicked so furiously I just can’t imagine surviving this. I’m in the waiting line for a specialist next week but I’m not sure I will be alive. Thank you for this video. You’re an amazing human. Much love 💜

[MsFriedTwinky]

The whole talking to yourself when you need the help and calling yourself “you stupid b**” hit home for me. The same internal voice. Struggling with the in between of mild and wild symptoms with also no symptoms. I have good moments and good days so it has to be “all in my head”. It’s still so hard to explain to friends and people I meet what exactly is wrong with me. Especially when there is no common diagnosis. Why I need to sit or why I’m home sick one day and there all energized the next.
The good moments make me feel normal and guilty for them. The bad moments make me feel like I just need to push through. Thank you for sharing!!!

[ladyogilvy]

I used to covet the rollators (walkers) of “old ladies, ” wondering when I would be old enough to have one. Then I had to borrow one from a friend to make it through an event I needed to take my so to. It was life changing. Don’t wait. There may become a time when a walker won’t be enough fto allow you to participate in life. Don’t miss out while you still can. Since a shoulder injury took that aid away from me, a doctor brought up my needing a wheelchair. I was shocked. “I and not disabled enough.” He said I would need one to participate in life. When it reaches that point, there is a serious loss of independence. I would need help to go anywhere. Use the walker with the seat, be able to sit when you need to, be able to chat with an upright friend without having to bail on the conversation to find a seat. Take your time looking at the art of a venor at an event. Make memories while you can.

[biffy]

It is the weirdest sensation to realize...oh....so I wasn't just "crazy" those times when I suddenly almost passed out and felt like dying. That was real. Those times when I suddenly couldn't walk because of joint pain and muscle fatigue that nobody could explain were not imaginary or me somehow faking it (even to myself.) When I collapsed on the floor I wasn't being "dramatic." When you live your whole life this way and NO ONE acknowledges these things are real you kinda do end up gaslighting yourself and quietly resigning to the fact you must be nuts and your experience isn't trustworthy. The silent self betrayal is maybe worse than the symptoms tbh. But now that I'm (finally) getting answers its almost disorienting. Hearing other people's experiences that I can relate to is so helpful.

[wc]

You were NOT put on this Earth to impress others, you are here to help others....and I'd say you're right on task.... My Grand Daughter has recently been diagnosed with this and I'd never heard of it before....yet by just listening to you, I now have the UNDERSTANDING which paints a whole new picture of what's she's up against...and criticized for.... Thank you from my Heart!

[PrinceFishBoy]

When you started listing symptoms I was like oh wow me too, but by the end I was almost crying. I'm currently on the journey to being diagnosed, doctor basically told me I have EDS, Raynaud's phenomenon, and POTS. Just had a gastroenterology appt for HORRIBLE stomach issues, on the waiting list for a tilt table test. She even said she could put me down for a geneticist but there wouldn't really be anything to come from it. I've been struggling with being active my whole life, only have had jobs where I am on my feet the whole time and it's agonizing. I've tried physical therapy, a chiropractor, and exercise for my knee and back pain and none of it ever helped for long. I'm so happy to have finally started getting on track to hopefully getting answers. I'm only 22 years old, I just want to live a normal life. :')) tysm for sharing your experiences. It's so nice not to feel alone.

Edit: Also important to note that I thought so many of these things were just in my head because I'm diagnosed w ADHD, anxiety, depression and OCD. I was so afraid of seeming like a hypochondriac, but my doctor reassured me and literally sat me down and said "Everyone I've diagnosed thinks they're crazy. You're not crazy, you need help." And I think it's so important to remember. Please listen to and BELIEVE your body!!! 💕