By Dawn Tucker, Guest Columnist
Ehlers-Danlos syndrome (EDS) sucks. There, I said it. I have EDS Type 3 hypermobility and it hurts. I cry every day, sometimes two and three times a day.
I have dislocated various parts of my body due to collagen deficiency. I have what is called frequent subluxations. My neck, shoulders and wrists have sprained for no reason other than I turned too quickly or took a deep breath. I never knew why. I just knew people judged me and were critical whenever I mentioned the severity of my pain.
My whole life (and I am 50 years old now) has been spent listening to others tell me my pain is all in my head, or that I am lazy or crazy. So I stopped telling people about it because no one wants to listen to a constant complainer.
Instead I isolate and spend most of my time -- when not working -- in bed trying to get my body to cooperate with me. It doesn’t.
I have three children and five grandchildren. One son and one grandson also have EDS, and I cry because I know they will be judged and criticized by people who don’t understand.
I once heard someone tell my son, “Something is always wrong with you.’ And I thought to myself, they could be talking to me. I am beset with migraines, insomnia, dental issues, allergies, fatigue, irritable bowels, sprains, pains and aches.
I too have been told, “Something is always wrong with you.”
And they are right. Something is always wrong with me. On bad days I want to give up. Then I remember, I might be the only person my son or grandson knows, who truly understands their pain. I cannot give up on them, even if at times I want to give up on myself.
I try to be strong and do everything myself. I hate to ask for help and I tire of arguing with people about my condition. Yet I know I will argue for my son and grandson.
In the last few years, I have made acquaintance with others who have EDS. But I’ve met only two doctors that were familiar with EDS, so I took to learning more on the internet. The internet offers a chance to get the word out about this condition. To let others know about EDS and the often painful associations because of this inherited disease.
Medical students are sometimes told, “When you hear hoof beats behind you, don’t expect to see a zebra.” That’s why EDS is symbolized by a zebra. It is misdiagnosed, under-diagnosed or simply not considered.
I am living proof that sometimes it really is a zebra. I have no problem with being a zebra, but this zebra has the heart of a lion.
Dawn Tucker lives in Ohio.
Pain News Network invites other readers to share their stories with us. Send them to firstname.lastname@example.org.
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.