Ehlers-Danlos Syndrome Online Support Group

Where to begin...hi Type 3 here


Guess I’ll jump right into it. Had my 4th surgery two weeks ago - tennis elbow. THte brilliant surgeon who performed the surgery on both of my elbows inregards to recovery says, “if you do something and it hurts, don’t do it. If you do something and it doesn’t hurt, then do it” this is his genius advise. We can all tell when the advice they give is generic, and what they tell am average person, especially when it comes to healing. What we need to hear is something like, typically, a patient will heal in about this time frame, and you can start doing this physically activity and that. But, someone with your condition can take a different amount of time to heal, and to be careful doing this or that.” My Head is spinning in trying to decide how much to say here… have to get ready for work because i have two jobs… live w/my bf and 3 kitties. Issues with any of the above? How about all. I do Too much… but all we know is what we’re taught right? Well lucky me as my bf’s mom didnwverythhng for him including not even instilling please and thank you’s. The reason that accelerated me into surgery? Not from playing tennis but from scooping cat litter. I do Everything around the house… laundry, etc… he never understands or believes me and looks at me like… really ?? I cant Do this or that? For ex: 2nd job is out acting classes together, runnthe canera, liars with talent and casting directors and actors, and I’m a reader. It’s a ton of fun. However, it’s carrying the tripods for the camera and the mic. I told Him I need The lightest of all you can find. To him, it’s light. He’s a strong healthy man without EDS. I tell Him I can’t carry all of that, and he looks at me as if I’m just saying that because I’m lazy or something. Like he doesn’t believe me… It’s beyond frustrating. I’m in so much pain My list if anyone can relate:
Surgeries for chronic tendinitis on both wrists
Both elbows for tennis elbow
Hip fracture out of nowhere at 42 years old. I’ll be 48 next month.
IBS - terrible crippling pain
Plantar fasciitis
Major depression - I take 200mil of Zoloft, Adderall, and pain oullsbas needed. I’ve been taking them for many years and never ever abused them. They cause constipation too which causes hemeroids and hence more pain…have to take a pill and a bill because of another pill, etc, etc… etc… getting ready for day job now - sit and type all day…pillows all over my chair and now another for my arm… and living with a bf for 5 years that for whatever reason does not grasp what I go through or he just simply does not care. I dont Know who will be reading this or when… so when and if… have a nice day and hope you feel okay.
Tina E.



Hey Tina,
Before I go on I just want to say I am not justifying your bf’s behaviour. Not at all. But I find many of your comments are fairly common for those of us with ‘invisible conditions’. I am often saying “…it would be easier if I’d lost a leg, people would be able to see the issue for themselves…”, but when our condition is not seen many others have no comprehension of it’s impact.
For myself, often I can be my own worst enemy. I grit my teeth a push through it to get the task done one day, then some people can’t understand why I can’t do the same thing again the next day when I’m in agony. To add to this I can also be ‘a typical male’ at times and not see some of the subtle signs of others in distress and sometimes I do need to be told. Something along the lines of “I’m not having a good day and I’m in pain, could you give me a hand please…” is often enough.
If your bf is informed (Hopefully) eventually he will pick up on the signs when you are having a bad day. Some men (Me) just don’t see it and we (I) need to be reminded.

Just a suggestion.
Merl from the Moderator Support Team