What I learned from my first time meeting another EDS patient
A columnist discovers the value of connecting with others who 'get it'
I’ve mentioned before that I’ve never met anyone else with Ehlers-Danlos syndrome (EDS) in person. That’s one of the reasons I’ve enjoyed writing this column: It’s allowed me to connect with others managing similar health issues. Recently, however, I met someone else with EDS!
My brother and his family were in town, so we invited over a few friends we hadn’t seen in a while. There were a lot of different food allergies to accommodate, but I didn’t mind. I have alpha-gal syndrome (an allergy to the mammalian sugar molecule) as well as EDS food sensitivities, so handling myriad food restrictions and allergies is second nature to me.
We were all talking about how we manage our various allergies, and the conversation drifted into other health issues. Someone mentioned chronic pain, and I said, “Oh, I totally get that. I have EDS.” The response was immediate: “No way! I do, too!”
The conversation that followed helped me better understand myself and EDS, and it highlighted how different people with the same diagnosis can be.
My takeaways
First, our conversation got me wondering why it had taken me so long to meet another patient.
I was diagnosed later in life, so I didn’t have the chance to meet other people with EDS while growing up. The condition is also somewhat unique in that patients don’t often meet during treatments or specialist appointments. At least, it’s never worked that way for me.
Sure, I’ve been to allergists, orthopedists, surgeons, and physical therapists, but people go to those doctors for a variety of reasons. Running into another EDS patient seems unlikely, and since it’s often an invisible disorder, I likely wouldn’t know if someone had it, anyway. It was a lucky coincidence that our group of friends happened to be discussing chronic pain and health issues.
In addition, I’ve always struggled to comprehend how EDS can vary so much in terms of severity. My symptoms might be worse than one person’s and not nearly as bad as another’s. I knew from a clinical perspective that those of us with EDS share as many differences as similarities, but it was helpful to experience this firsthand while talking with another patient.
More than anything, I felt an immediate connection with this individual. Although our symptoms and care management plans differ, I didn’t have to explain or justify anything. When I mentioned the exhaustion of chronic pain, I didn’t have to worry about whether they’d understand. When I brought up the widespread achiness that never lets go and constantly simmers beneath the surface, it was such a relief to know I didn’t have to explain what that sensation is like. Despite our differences, we shared a basic understanding of life with EDS.
Having never met someone with EDS before, I was struck by how our shared understanding formed such a solid foundation for interaction and friendship. For the first time, when I shared something that had always felt like an “only me” thing, I got an immediate “Yes! I totally get that!” in response. Finding someone who “gets it” can be so comforting and validating.
Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
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Heather mcpherson
this means so much to me. 74 years of others not getting it has left hopelessness from being dismissed.thank you.( getting on a horse again would be heaven.)
Mary Beth Lang
I was just diagnosed in 2021. I was 68 years old, then. Now I'm going to be having surgery on both of my thumbs. Basal joint has no cushion so it's been bone on bone pain for year on my right hand, Surgery is on August 1st. And a lot of nerve pain in my left. Medial nerve if I remember right.
I woke up completely deaf in my left ear 5 years ago, with tinnitus growing louder and louder each day. I'm depressed to live in a world with 24/7 noise in my head. I was approved for a cochlear implant and it helps a great deal during the day. It's helps to mask the roar and high pitched tones. But only until I have to take it off for bed, which is why I stay up until I nearly fall asleep sitting up. My doctor said that will probably take out my other ear as well because it is usually bilateral.
I wasn't diagnosed until I suddenly developed POTS in 2021. I was barfing every time I was cooking, or climbing out of the tub and it made no sense to me at all. Much searching, note taking, finally led me to POTS which led me to EDS. My granddaughter was diagnosed as a child, but I never actually knew what was wrong because sh didn't want anyone to know.
So I do know someone, but I unknowingly was the one who passed it on to her. She still won't talk about it. Hers is more gastro related and she's been on a feeding tube several times
My eyes are really taking the hit presently. You do know that eyes are nearly all collagen, right? I've searched all of the hospitals and opthamologists within 150-200 miles frm me and I don't think there even are any opthamolagists who work with EDS. My own opthamologist has been making phone calls for weeks, but she's had no luck either. My vision is now maxed out as far as any corrections with glasses or contacts which I'm no longer able to wear.
I was adopted, so no family history there, either. I have been veering into the agoraphobia lane in the last year or two. I've vomited in too many public places, or have just lost my balance and have fallen just one too many times to e comfortable out and about. I'm like the snake eating its own tail. The more these things happen the more avoidant I become.
I understand that you can't possibly post all or even a smidge of this self pity part dirvel. But I also just lost my husband in April of 2021. He lost a lot of weight in December of 2020 and because he looked very much like James Gandolfini, he could lose 50 pounds and not notice for awhile, especially during the holidays. But it was already too late. The ocular melanoma that he survied 25 years ago was back and it was everywhere. He was gone by April and had just turned 59.
So I sold the family home and downsized to a sort of a starter home last year, and am still unpacking. I gave, donated, had friends do a FaceBook sell-off for me and they could keep whatever money they could make just so I could be rid of so many things I had once treasured. I filled 2 large dumpsters and I'm still having trouble fitting myself in here.
Since I didn't know that I had this thing that even my doctors had ever heard of, I had PRK done on my left eye twice and my right eye once. I had cataract surgery when they said it was time, and my opthamolagist did an upper lid lift about 6 years ago, where he noted that he had never seen so much blood. My eyelids are now right back where they were to begin with, and the rest of my face is following along. Every part of my face is sliding down to my neck and it's not pretty. My kingdom for a facelift.
Well.. You are a very busy lady and I will let you get back to it. I would dearly love to reread this, spellcheck, and delete, but I can't really see it. I've been typing oldschool and without looking. Love your column and admire your cheerfulness. I just need a bit more time, I think, to wrap my head around 2020-2023. And as if that is not funny enough, I was just told that I have macular degeneration forming in both eyes. Thanks for listening. I'll try my best to stay positive!
Robyn Kiernicki
I was diagnosed later in life. During pre-teen life my mother had taken me to the family doctor because of my various joint pains and the diagnosis was "growing pains". In high school when I told my sports teacher that star jumps were causing me considerable pain in my ankles and knees, I was told "no pain, no gain". I spent the rest of my schooling thinking that either I had a very low pain threshold or that I was just a big 'whoos'. The only sport that I loved was swimming ( of course there was no pain) and I excelled at it.
I still played competition netball because all my friends did, but I paid for it in pain.
It wasn't until I was in my twenties that it occurred to me that in fact I had a very high pain threshold. Looking back on the birth of my first child , I realised that I had learnt how to 'compartmentalise' my pain . When the labour pains became intense , my first thought was that I couldn't cope with that level of pain for the next 8-10 hours, I was overcome with panic. Fortunately my second thought was that I didn't have to cope with it for hours , I only had to cope with it for one minute. That is how I managed to get through the rest of that day, one minute at a time. When I was in the final stage of that labour, my right hip was dislocated by all the pressure applied to my leg . They were telling me to push and I was trying to tell them to stop pushing my leg, but all I could get out was "no" or "stop". I can laugh about it now , they must have thought they had a mad woman on their hands.
During my 30s and 40s I had many other conditions: TMJ syndrome, tennis elbow, dequervain's tenosynovitis, trigger finger, carpal tunnel syndrome, scoliosis, spondylolisthesis, spinal canal stenosis, I deliberately avoided referral to a rheumatologist because of all the toxic medication used in that speciality.
It wasn't until my daughter started to develop the same symptoms that I decided to have myself investigated By this stage I had already had a reconstruction of both feet and ankles, a spinal fusion from L3-L5, a repeat reconstruction of right foot/ankle after failure of the first procedure, bilateral carpal tunnel decompression and a dislocated ankle. A provisional diagnosis of EDS was made and I had genetic testing to rule out Loeys-Dietz syndrome (fortunately negative) . So at the age of 60 I finally had a diagnosis of EDS.
Since then I have significant shoulder problems, I have gone from some partial thickness tendon tears to full thickness tears of all shoulder tendons on both right and left shoulders. Both biceps tendons have completely torn out at the insertions and the bicep muscles contracted to the extent that the sonographer was unable to locate my biceps muscles. The shoulder surgeon advised that reconstructions would not work, I need both reverse shoulder replacements, however, with the procedure being so new ,he will not do it until I am seventy.
I have also been diagnosed with "flat back", my lumbar curve has straightened out and my upper body leans forward to the extent that I can't maintain my balance. I have been advised that I need three separate spinal operations. one to insert a wedge below L5 to tilt my spine back to recreate a lumbar curve. two to remove all the hardware currently fusing me from L3-L5 and three to fuse me from T10 -pelvis. When I asked about my prognosis I was told that the prognosis for my back was great, but "surviving the surgeries is the tricky part".
For now I have decided against any more surgery, there are worse things than having to use a wheelchair when I leave the house.
My daughter and my niece have both been diagnosed with EDS. Unfortunately they both look at me and see their futures. I am actually glad I didn't know what was in front of me when I was young.