I have been living with Ehlers-Danlos Syndrome – Type III Hypermobile (EDS3) for over 50 years now, but I was only diagnosed three years ago. For decades I wondered what was wrong with me. Others accused me of laziness and clumsiness. I was even documented as a malingerer by one all-knowing physician. Later, when the phrase was coined, I was labeled a drama queen. However, I did not come here to whine. I came here to identify medical problems I have experienced that I believe were a result of my EDS3 even though none of my doctors, or, for that matter, any of the articles I have read about EDS3, have ever identified those problems as symptoms or “side effects” of EDS3. I have also come here to hear what you have to say about it. Do you have EDS3? What has been your experience? Are you a health care professional? What have you seen in people with EDS3? Have any of you been a caretaker for a person with EDS3?
“I’m going to have to rough you up a bit. You look fine!” A lawyer actually said this to me as she looked ahead to my appearance in a civil case. I have heard many variations of “You don’t look like there’s anything wrong with you!” all my life. That sounds rather innocuous, does it not? Some commenters were well-intentioned, some were truly confused, and others were snide and accusatory.
At some point in the last ten years or so, a sister-in-law 20 years my senior had hip replacement surgery due to brutal abuse from her father when she was a child. Feeling immensely sympathetic, I offered to stay and help her through her recovery. Much to my surprise, she informed me that she did not need any help. The doctors had her up and walking right after the anesthesia wore off, and she had been fine ever since. She smugly declared that she did not need any help. She recovered before she left the hospital. My eyes shot to those of my brother-in-law for reinforcement. Surely, she was being hard on herself! All of my surgeries took months, even years, of recovery. He looked even more smug than she did. His face clearly challenged my recovery times as fakes. Was I being overly sensitive?
My brother-in-law confirmed that I was reading him correctly. He began to assail me with cutting questions accompanied by expressions which ran from smug indignation to all out disgust. I had offered my help, whatever I could do at the time, in heartfelt sincerity. The response was an all-out attack on my character. He pointed out over and over that his wife had just been through an extremely invasive major operation, one which would surely require more recuperation than the measly repairs to broken bones in and around my ankles. He convinced me that I must be extraordinarily weak! I sat there taking his verbal assault wondering if he was right. Why was I still recovering from a surgery that by all accounts was less traumatic than his wife’s hip replacement? Tears stung my eyes as I did all I could at that point: I congratulated my sister-in-law on her rapid recovery and wished her the very best in the coming days and years.
Few people have been as harsh as that brother-in-law, though there have been others, others who were much more hurtful because of how much I valued their opinion of me. The truth is: Nobody, including me, understood why I was so slow to heal, why an injured area never really seemed to fully recover, or why I would be finally getting close to normal only to sustain another injury as bad or worse than the one I was nearly free of.
When Doctors Make You Worse
Once upon a time I thought that a good person, a good citizen, listened to the doctor, just as one would any authority figure. This applied to parents, teachers, policemen, firemen, paramedics, judges, IRS agents and the like. That thought seems ridiculously naïve now. The media ran stories indicating that if a doctor warned you to do something and you ignored that advice, the doom-filled consequences lay squarely upon your own head. Therefore, when doctors, whom my husband, sister, or adult niece agreed were knowledgeable and compassionate, prescribed medicines for me, I took them. I was taking Oxycontin, Oxycodone, Hydrocodone and many other prescriptions at one time. Needless to say, I ended up sleeping 20 hours per day. My husband accused me of being addicted to drugs.
That accusation seemed foreign to me. I was not abusing the medicines or drugs prescribed for me. I followed dosing directions to the letter. Then, after years and years of surgeries and subsequent opioid use, my two most prominent doctors said the same thing to me independently of each other: “Your narcotic painkillers may be making your pain worse.” I was dumbfounded! How could this be? The first doctor to tell me this was my Pain Management Specialist, of all people. He was entirely responsible for giving me all of those prescriptions. I was reeling from this incomprehensible declaration. “But I’m allergic to pain! I come to you to get rid of pain. What do you mean it makes it worse???”
Two days later, I had an appointment with the Rheumatologist who had just diagnosed me with EDS3 the week before. I still had no idea what EDS3 was or how it was impacting my life. I told him what medicines I was on, and he said, “You know, those narcotics you’re taking could very well be making your pain worse.” I could not believe my ears! Two in one week! In January 2018 I stopped taking all narcotic/opioid painkillers at once. I went through days of shaking, temperature fluctuations, anxiety mixed with depression, and many other symptoms, but I did not take any more of those drugs. So, apparently, I was addicted to prescription drugs. My sister reassures me by saying the only thing I did wrong was listen to the doctors. How sad.
Since those days, I have learned that less than five days of use of narcotic or opioid painkillers triggers addiction. Who recovers from an invasive surgery in less than five days?!? No wonder I was addicted. In the meantime, my Pain Management Specialist bought a deep-sea fishing boat and took frequent trips offshore with his multiplying brood, which I feel certain were able to pick Ivy League schools based on my regular office visits and intermittent treatments.
I trusted him! My husband trusted him! He often spoke of research he had done on the effects of the medicines he prescribed, because his patients were important to him. He only told me about the contrary effects of the medicine when the government started cracking down on the issuance of opioids. Then he seemed panicked. Do not patients of EDS3 have enough going against them? Must they maintain a defensive posture with their doctors? Must they know as much as the doctors to protect themselves? The obvious answer is hard to accept.