I was born with Ehlers Danlos Syndrome which is a genetic connective tissue disorder. We don’t make enough collagen so our connective tissue is too loose. Doctors used to believe that it only affected our joints where the ligaments and tendons were too floppy to keep our bones where they belonged. Doctors are, now, recognizing that connective tissue is everywhere and Ehlers Danlos affects our organs too. There are 6 kinds of EDS commonly recognized. I have EDS Hypermobility type or H-EDS. This is the most painful type but not life threatening.
I grew up in the 50’s and 60’s when H-EDS was not recognized. I began having leg aches when I was about 3. The doctor called them growing pains and when I didn’t grow out of them he decided that my leg aches were caused by fallen arches. So, began the foot exercises. I picked up marbles with my toes and wore the ugliest, heaviest shoes on the market with built in arch supports. After I grew up and had a bout with sciatica, I realized the pain was exactly the same as that pain I’d had as a child. Those awful shoes couldn’t have done any good when it was my back causing the problem. All they did was make walking a nightmare.
Each person experiences EDS differently. There are a whole host of symptoms that one’s doctor asks when diagnosing it but one doesn’t have all of them or may have some that are not on the list. I had a lot of pain and because H-EDS was not understood, doctors felt frustrated with me. At 4, my mother was told to take me to a counselor for my behavioral problems. It was thought that I was jealous of my little brothers and trying to garner more attention. In my teens I was told I should see a counselor for my hypochondria. I quit telling people what hurt. I went about my life dealing with the aches and pains and doing what needed to be done anyway. That’s not all bad. I’m a stronger person who meets her responsibilities no matter what. But, I did end up doing a lot of damage to my body that I wouldn’t have done if I’d known better. This EDS’r made it through boot camp!
I was told in my mid-twenties that I would not have children. Some of the internal manifestations of the EDS made it harder to get pregnant and still harder to carry a child to term. As it turned out, I had two children. The pregnancies were really difficult and I was on bed rest for 3 months with my second one. Labor and delivery were a breeze though so I just thought I’d been given a gift!
It wasn’t until I was 52 that I was diagnosed. We had a family orthopedist. Most families don’t need one but we did. Those children I’d worked so hard to get also had EDS. There is a 50% chance that one with EDS will pass it along to his/her children and I hit the jackpot. Both of my children inherited. They were just 18 and 20 when they were diagnosed so they didn’t have some of the psychosocial damage that I did. I had always believed their pain was real and I had always looked for real answers. My daughter was already pregnant when she was diagnosed and true to form, her child was also born with EDS. So, in our home we had four with Ehlers Danlos syndrome. Sometimes, I felt so overwhelmed I could hardly breath. I called our genetic counselor one day when I had found the bottom of my pit of despair. I was looking for answers or help or a way to make my life just a little easier. The one comment that she made that has stayed with me to this day was, “Teri, I have lots of families with lots of different genetic differences and I’ve got to tell you that the families that I have with EDS are the most pitiful. There really is no help available to you”. So, I soldiered on. My grandson had already had a collapsed lung at 5 weeks and had begun subluxing his knee at 18 months. My daughter had more trouble with her joints than I had ever had as a young mother and my son had had three knee surgeries and a surgery for a lung that kept collapsing. I, on the other hand, had stuff but not life threatening stuff. I also had the scars from my youth. Too many doctors telling me that there was nothing really wrong with me and too many family members making comments about Teri, the drama queen had made it almost impossible to “complain effectively” as my son puts it.
I am, now, 66. My son and his family and my daughter and her family along with my husband an I live in a community. I can’t see a better way to cope with this insidious condition. Living together makes it possible because when one just can’t anymore the others can pitch in until one can.
I home schooled my kids because along with the EDS my son has Asperger’s Syndrome. Asperger’s is much more prevalent among EDS’rs. With his physical and psychological needs, the school just couldn’t do it all. I could though. I could provide the quiet environment and physical relief that he needed in order to learn. Since I was home schooling one, it made sense to home school them both. I was scared to death to do it. I was frightened that I wouldn’t do it well enough and the kids would suffer because of my deficits. They both ended up in college though and they were both on the Dean’s List. And, now, many years later, my son is in a very responsible computer career and my daughter was until this week. Working is wrecking my daughter. Many with EDS are on disability because their bodies just won’t allow them to continue working. My daughter did NOT want that for herself but after 3 brain surgeries and some permanent damage done by the tumor, she’s just not able to continue. This week she applied for disability.
With EDS, one doesn’t look sick or disabled. With EDS there is pain but it’s not obvious. We all struggle with the fact that our EDS doesn’t show and therefore almost has to be kept as a secret because there are still doctors out there who think it’s all in our heads. There is also a shaming of those who are “less than” in this society. There is all that talk about lazy people on disability and how they are taking advantage of the system. I can’t for the life of my understand how anyone would actually think that way. Who would quit a perfectly well paying job to live at poverty level? However, there is that stigma that we with invisible disabilities must find a way to live with. For my daughter, the stigma has become less important that saving her life and for that I applaud her.
There was an article that came out sometime in the last 10 years that indicated that rheumatologists have decided that with H-EDS one’s joints have wear and tear that equals double the age of the person involved. When I get up in the morning and struggle to the coffee pot, I think to myself, “Not bad for joints that are 132 years old”! I feel better for knowing that the pain that shoots all the way down my leg from my hip and up my back has a right to be there.
For more information on EDS one can visit the Ehlers Danlos Society Once this disorder was thought to be rare. As it’s more recognized, the powers that be are finding it’s not as rare as it was once thought to be.
Teri's Healing Tides 