This is how I feel, Lily however finds that sleep comes easy.
There are some things that stay with you, even though you should let them go. I know I shouldn’t let negative encounters rent space in my precious little head, but sometimes you just can’t evict them. For some reason they just stick with you. Two incidents with people that I considered friends still get to me today.
The first was with an ex-boyfriend whom I had remained friends with. He mentioned to me once that he thought I was a hypochondriac, even when we were together. I’ve never been a sickly person; I don’t get colds often, or the like. I also don’t complain often to people, I know they don’t understand, and I know they don’t want to hear it. He and I were together before I was diagnosed with HEDS, but long after I suffered from chronic pain. I’ve never been able to sleep on my right side, as it is very painful. I also have considerable amount of trouble getting to sleep because of pain, and often toss and turn. And that is what he was referring to. I was gob smacked when he said it; I was hurt, angry, and confused. Our friendship was lost that day, he refused to listen. He was right in his mind, I was a hypochondriac, and what was I to say? I didn’t have a diagnosis, I only had chronic pain. He couldn’t see the pain, he couldn’t feel it, and I didn’t have a reason for it.
So then I wondered is this how others see me? If I complain about the pain will others feel the same way? I already go out of my way to not complain, to not let on to the pain I feel every day. And at that moment I ceased all together. I’d already had doctors insinuate that it was in my head, and now my friends as well. So for several years I never made a peep, I didn’t tell anyone, I didn’t tell doctors, family, or friends. I suffered in silence with my pain.
Several years later, and after I had been diagnosed with HEDS another devastating encounter with a friend occurred. A large group of us had gotten together for a bbq, and good times with friends. The girls were all talking about training, and running charity races. I made the mistake of joking that I wish I could, but at this point if you see me running there’s a bear chasing me. One of my friends started lecturing me that I just needed to do it, and to stop making excuses, if I started working out I’d feel better. I tried to explain to her why I couldn’t and she let into me that I was just making excuses. It got heated quickly; I left the BBQ in tears. Our friendship has never been the same, and we’ve become more of acquaintances at this point.
It was at that point that I decided to never mention my EDS again, and I didn’t for at least 2 years, closer to 3 years. I never mentioned my illness, I didn’t speak of it, and I didn’t tell anyone. When I had a severe dislocation I drove myself to the emergency room. When things hurt, I sucked it up, and moved on. If I couldn’t deal then I just shut myself off until I could. I just ignored the EDS, coped with the pain, and suffered in silence.
In hindsight, my reactions to these events could have been more constructive. But, EHS is a lonely disease. People don’t understand it, they can’t see it, and no one has heard of it. You can’t see Ehlers Danlos, you don’t look sick. Any disease that causes chronic pain is a lonely disease. Unless you’ve lived with it, you can never understand just what it is like. I’ve learned now that I can’t remain silent, not because I need to complain, but because I need to spread awareness. I need to be a voice, and I can do so as long as I surround myself with supportive friends. It may have taken a few disasters for me to learn how to be a voice, and how to accept that not everyone will understand….and that’s ok.
Finding a doctor that can properly treat, and fully understand Ehlers Danlos is literally like finding a needle in a hay stack.
It frustrating beyond words. I have found that there are generally four types of doctors when it comes to Ehlers Danlos/EDS:
- Doctors that say that they know about EDS, and/or have treated someone about it. Then you realize through being treated by this physician that their knowledge is very limited, and they would never admit this. This can be a dangerous, and on occasion painful. People with certain types of EDS do not metabolize medications normally. Most are very slow to respond to pain medication, and many are more resistant to them. Overall we do not metabolize medications as expected, and have sensitivity to many drugs. Many doctors don’t seem to get this through their skulls, and don’t always take to heart when you say “Are you sure, I tend to be very sensitive to “x” types of medications”. They assure you it will be fine, and next thing you know you wake up in the bathtub with no recollection of the past 15 hours. EDS patients are extremely tolerant to local anesthetics, the “cane” drugs they use to numb you, and usually require up to double of the normal dose. So there you are getting your tooth drilled, and ZING! It really is a fun time. I just wish they could understand that it’s OKAY to admit you have limited knowledge, or experience with EDS. The vast majority of EDS patients have heard it, we kind of expect it.
- The doctors that openly admit that they do not know much about it, and/or have never treated anyone with EDS. However, you soon realize they have zero interest it becoming educated about it. Since it’s rare, you are the only person they know with it, there isn’t much need right? What’s the worst that could happen? Well, see above as that gives some indication of some of what can go wrong. The kind nurse/or doctor might try to be helpful and help you move to the position they’ve not clearly explained they want you in, and now you have a dislocated shoulder….great…thanks…I was going for an all-time record of not dislocating that shoulder and you sir ruined it. Not to mention, duh….I have EDS, I am coming to you as a doctor to probably help me with an aspect of it. If you aren’t interested in learning about it so that you can properly treat me, how about to just tell me so that I can find another doctor instead of wasting my money and time until I realize it?
- A wonderful group of doctors that let you know that their knowledge is limited, but they are very open to learning about it. I now carry a list of links for doctors to look through, as well as a book written by an EDS specialist for them. I’ve had exactly one doctor fall into this category, and I love him for it. A doctor that is willing to admit their limited knowledge, and are open to learning from a patient is a very special and wonderful thing. These doctors also tend to have a good bedside manner, and talk to you like an educated adult.
- The very rare, literally probably 1 in a few thousand – the doctor that actually knows a good deal about EDS or at least understands it enough for the specialty they work in to treat you. I’ve only met two of this group, one on pure accident and one through begging, questioning, and researching.
There is one other group I have not included, mainly because I have yet to find one. I know they exist, there are a few up North, and in the Midwest that I am aware of. Those are the doctors that can be considered specialist. They are the ones that have written information, books, and/or contribute to the knowledge base of EDS. They are mythic creatures to me at this point.
Over time, trying to find a doctor that can really treat you becomes something that induces rage. Luckily there are a couple of great foundations that have great information. People with EDS, no matter what type have to research; they have to become experts on EDS. They also have to become advocates. This is something I struggled with, but will explain in another post. I’ve also come up with a list of questions that I now use to screen doctors that I will share in another post. This post, well….it’s mainly about venting.