I hate appointments. I hate waiting rooms. I hate doctors.
My endo diagnosis and all of the insane ER trips that led me to it, have made me very untrusting of medical professionals. I don’t know how many doctors I’ve seen in the past 3 years but they’re all essentially the same. You go into the room at least 20 minutes past your appointment time,scroll through your phone for 20 more agonizing minutes, they half knock, walk in, say their name, sit down in that dumb rolly chair, login to the computer screen (usually a huge desktop Mac) and look at you. That’s your cue to start telling them what’s wrong with you. Wanna hear something funny? There’s so much wrong with me that I never know where to start! Okay, that might not sound funny to you but I’m laughing. New doctors are the best. They start out so innocent and unexpecting and then it all goes downhill. I start our with so I have endometriosis. They ask the standard questions. I answer. Things seem fine. But then they start asking about what things are like currently. What treatment is now, what I’ve tried. As we go down the list I’ve things that I’ve tried and failed, the look of concern grows. When we talk about my current symptoms, they usually can’t help but show how utterly puzzled they are by me. It’s not their fault. Doctors don’t know enough about endo. It’s under researched, it’s under discovered, it’s under funded, it’s under everything. But seeing your doctor look A puzzled and B worried isn’t great.
The other day I had an doctors appointment. It went exactly like all the ones before. I saw a new doctor because my regular family doctor was away. I just went in to refill my birth control prescription. I asked her for a year refill because taking those little pink pills every day is the only thing keeping me out of the hospital. She ran through the basic questions and took my blood pressure. She started asking me a bit about my endo and I started answering. Honestly I just wanted to prescription refill but I understand that it’s part of her job to ask. We got into the gory details of it all those I’ll spare you for now. She showed me the “template” that they use to treat people like me. Turns out I’ve tried over half of their little list of treatment options to no avail. At one point she looked at me and said “so what do you do? How do you cope?” To which I had no real answer to give her.
The appointment left me feeling a lot of things. Processing emotions after my doctor visits is usually rough. I typically have a ton of anxiety going in and even more leaving. I try to suppress the feelings after and just go about my life. But this time it just got the better of me. I felt broken, hopeless, lost. I felt like i started to ask myself the same questions the doctor had asked. How do I cope? How do I deal? Suddenly I was confronted by a sea of emotions that I couldn’t exactly ignore. I cried in the car. I cried when I got home. I lay down on the couch and I cried. I cried telling my boyfriend about it. I cried and cried and cried.
I think doctor fear and distrust is normal for people with chronic illness. We often hear a lot of big words, see concerned expressions, and leave feeling like I did the other day. Hopeless. Doctors don’t have time for me. They don’t really have more than 15 minute blocked appointments to give me. Even if we had endless hours to talk about my condition, I don’t think the medical community has a clue what to do with endometriosis yet.
All I know is that I’m not getting better. This appointment made that very clear. All I left with was more anxiety and a referral to another doctor. Yay.
Right now I feel the constant pressure of trying to ignore my illness and live my life, but also to acknowledge my problems and dig deeper to find my own solutions. Hopelessness is a huge emotion. It’s very heavy and dark. Just knowing that I have something that can’t be cured leaves me feeling very empty. I know that endo sufferers probably have this hopeless feeling in common. They say misery loves company right?
If you or anyone you know suffers from endo or another chronic illness please encourage them to advocate for themselves. To find second, third and fourth opinions, until a doctor helps them. Be there for people that you love, feeling hopeless comes with a lot of loneliness. A good support system is really important.
Please share your health stories with me! I love hearing from others on how they handle their health and issues with chronic pain! 🎗