Dear Doctor

     There's a reason chronic illness patients have PTSD. It's from experiences like with you. The doctor doesn't read their chart or know their history and what they've been through. You don't know what it took for that patient to just make it to the appointment, let alone keep it together while they are there. Long waits (an hour and a half specifically that time) sitting in an uncomfortable chair in pain. Trying all different positions in the doctor's office while waiting longer trying not to cry or scream in pain. How can you not notice this when you walk in?


Not asking me any questions or cutting me off when I try to explain because you misunderstood important details that make a difference in my treatment. Telling me nothing will fix me, but I'm only going to get worse and worse. That we don't want to go down that path of giving me medicine for relief when you have no idea what my path has been. Belittling my PT and Cardiologist of what they have diagnosed me with and what is causing my problems.


Prescribing me a medicine that I filled out pages and pages of paperwork the first visit, reiterated at each appointment that I have tried multiple medicines and treatments and what has given relief and what hasn't, and that I'm on the verge of ER every day. How much it took to hang in there for a month until this next appointment. Only to be told you could possibly give me an injection after my cardiologist appointment and then handed me a prescription for Tylenol and you would see me again in two weeks. That's when I couldn't hold it together and started bawling. So you tell me to try taking the Tylenol for two weeks and call them. You DON'T get it. Do you know how many times I've tried Tylenol? NO RELIEF. I told them I will not fill the prescription. They walk me out and I get to make my next appointment.


What for? This is what makes C so infuriated. When the appointment is a complete waste of time. This isn't what made it worse. What made it worse is that driving home I got a call from a nurse who said the doctor looked over my chart and he would give me two weeks of the Tylenol instead of one. Again, I told her I would not fill the prescription. Monday comes around and I get a call from the receptionist that the pharmacy said I did not fill my prescription. Again, I told them I would not fill the prescription with her response that I needed to come give the prescription back then.


Something my counselor told me after my experience with my neurologist (telling me I was just having pain because I'm depressed from having a c section) is that the doctors work for me, I don't work for them. If you are going to not believe my pain, learn about my rare diseases, or try to help me, you are not worth my time or energy. You WILL BE FIRED. Total validation is when I go to a doctor who gets it, I mean gets it, listens, asks questions, wants to know my goals, understands my rare diseases (and if they don't know, they find out or learn or tell you they know don't know, but does not downplay what you are going through) and that doctor asks what the previous doctor did or if they did such and such, but gets furious that none of that was done. That I had to go all that time without being believed, listened to, or helped when it's not all in my head.


I know if this has happened to you, it makes you want to give up. Not even try to go to anymore doctors or appointments. I was upset that this appointment happened after I felt like I was really making progress with my whole team, but I was more angry because I know this happens to so many and it's discouraging. I have white coat syndrome for a reason. Sure, I understand you may have addicts trying to just get pills or need to be explained what's wrong with them, but if you come across a patient who is knowledgeable and knows their health issues, don't see it as being threatened or a negative thing, but please see it as an opportunity to learn and figure it out with them so that you may be able to help so many other people down the road.


I'm not going to let that appointment or you, doctor, stop me. You are just fueling my passion and purpose showing me why I need to write about this, share about this, educate others and doctors who don't know about EDS, POTS, MCAD, or PCS and spread awareness. Because if we make an appointment, we are reaching out and trying to be proactive in getting and feeling better so that we can live life to the fullest.