The Doctor Who Stopped Me in My Tracks When I Expected a Fight
As a person with chronic, invisible illness, I feel like I have to always be ready for a fight. A fight against a doctor, a pharmacist, a friend, a family member, a stranger, a coworker, a fight to defend myself and not take no for an answer, a fight to get what I need and to make sure people understand that there’s more to me than meets the eye. I have to always be on guard, and it’s exhausting. At the same time, I don’t even notice I’m doing it.
• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
I dislocated my knee a few weeks ago. I’ve subluxed things before, but this was different — this was much more painful, and I’ve never seen a doctor for my knee (like I have for most of my other body parts that I’ve injured) so I didn’t know what to do about it. The problem was, I was an hour and a half away from my doctors, and I had to be at work in six hours. I debated going to the urgent care where I was, but my mom (thankfully) told me to call the practice I usually see and just ask if they had any last-minute cancellations. They did, so I left and started to prepare myself for the fight I knew I was going to have to fight.
This was a new doctor. I’ve never met him and I’ve never heard of him. Yes, he works with my other orthopedists at a large university research hospital, but that doesn’t mean he knows about my condition. Ehlers-Danlos syndrome (EDS) is considered “rare” still, and we zebras have to constantly defend ourselves and our diagnoses to new doctors. They sometimes think that because it’s so rare, we are being misdiagnosed or just “dramatic women” (yes, I’ve been called that). Often when we see a new doctor, they want to try a treatment that works for most people without EDS, but nine times out of 10 we’ve tried it and it doesn’t work for us. Not to mention, I’ve actually had a doctor say to me, “That’s something we learn about in med school but they tell us to just let it sit in the back of our mind because it’s so rare.” Sometimes we even have to explain what the condition is to doctors and nurses, or they will search it on their smartphone right in front of us. Kudos to them for looking it up, but we still have to educate them about our individual symptoms because each person presents so differently. We usually have to fight for pain medicine on top of everything, because many patients with EDS are seen as “drug seeking” due to the chronic (yet appropriate) use of pain medication to manage the chronic, severe pain related to the condition, a pain that is not well understood in people who do not have the condition.
So when I go to a new doctor, I have to be prepared to defend my diagnosis and fight for the care I need. I walked into this new office mentally prepared to have to fight with this new doctor. I had my speech ready about what EDS is, how they came to my diagnosis, and what I’d say when he tried to argue with me.
The nurse and trainer came in to get a summary and X-rays, and then the there was the knock on the door. I took a deep breath. I was ready for this fight. But also, I hate confrontation, so I was going to first hear him out, see how it was going to go, and hope for the best. He introduced himself and he was actually really nice. I started to feel a little better. Then we started our conversation that stopped me dead in my tracks:
Him: “I’m sorry this happened.”
Me (with a smile): “Well, it’s my life so I’m used to it.”
Him: “I’m sure you are, with EDS I know this is the norm for you.”
A weight lifted off my chest, I could breathe! Wait. What? No. I must have heard him wrong.
I didn’t say anything else; I let him examine me and see just how far I could bend, and we talked about options. He answered all my questions, I didn’t even have to ask for pain medicine, and he told me what to do the next time it happened.
His immediate acceptance of my diagnosis and his willingness to help was something that I was not anticipating. It was such a relief to feel understood. On my drive back to school I was thinking about our conversation. He didn’t pity me. That’s something else those with chronic illness dislike. His “I’m sorry” wasn’t said in a way that meant, “I feel sorry for you.” He genuinely meant he was sorry it happened. That’s when I realized every “I’m sorry” isn’t always because people feel sorry for us. I can say “I’m sorry” because I don’t like that you’re hurting and I wish I could help while not being patronizing. I also realized that I don’t have to always be on guard. I didn’t know that I was so stressed about the potential fight until we talked and I felt such relief.
My entire experience that day was great. I’m truly blessed to have doctors who understand. I am thankful every day for that as it makes my life just a little easier because not everybody has the same privilege. But to all of us with chronic conditions, be prepared, and always fight for what you need — just remember that you may not have to fight that fight. Don’t go into every appointment assuming it’s going to go poorly. Start off being open; see what they say and how they treat you. Hopefully, you’ll be pleasantly surprised.
Alexandra is a wife and nurse dealing with Ehlers-Danlos syndrome (a connective tissue disorder that affects every body system and causes chronic pain) and its comorbidities (postural orthostatic tachycardia syndrome, migraines, irritable bowel syndrome, mast cell/allergy issues, sensory processing issues, adrenaline dumping/panic disorder, and general dysautonomia). She loves her husband and three golden retrievers more than anything and still tries to do the hobbies she can, when she can (photography, horseback riding, painting, singing and playing violin and piano).
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