I had a realization this past week when I had an appointment with yet another new doctor. If you've been following my blog for any amount of time, you may have picked up on my *slight* dislike of new doctors...yeah...NOT A FAN.
Ask anyone in my family, and they'll tell you that I definitely prepare myself for new patient appointments by going on the defensive and being prepared to fight for myself. I've had doctors tell me there was nothing wrong with me, everything was just in my head, or even to come back when I couldn't walk and maybe then he would have an interest in my case. It's definitely been a journey to get to where I am now with the doctors that I have. I am so thankful to have the doctors that I do, but I still get nervous when I have to see a new one.
Last Thursday I had a first appointment with a local allergist/immunologist. This summer has been rough and right now my health is very unpredictable and my mast cells are just *slightly* out of control. My PCP gave me the name of a local allergist for me to see who he felt like would have more experience with some of the more unusual treatment options recommended by my specialist and is more familiar with allergy-type reactions in general. Despite knowing that my PCP knew this doctor personally and was recommending him did not ease my nervousness that I had at the first appointment.
But I learned what I think is an extremely valuable lesson at this appointment.
I know that I'm an unusual case, but I've never really thought about what that looks like from a doctor's perspective. I walk into a new office with a 4-inch thick binder of my medical records, a feeding tube and my backpack with formula, and my defenses up. The doctor has never met me before, and all he sees is a patient who has multiple doctors around the country, a long list of "weird' issues, specific treatment requirements, and has a defensive wall built up. All of a sudden, I don't sound like the kind of patient that a doctor wants to see...
And that's why my appointment with my new allergist did not start off so well last week. We both had our guard up, and it was obvious neither of us were completely comfortable during at the beginning of the appointment. I felt like he didn't believe me and was barely listening as he was asking questions and taking notes. It seemed like he was just going through the motions and trying to check items off his list so he could get on to his next patient.
I started to get really frustrated and discouraged, but instead of just shutting down, I instead tried to turn the appointment around. While I didn't use these exact words in the appointment, this is basically what I said to my doctor. And this is where the tension in the room eased and we realized that we both had something to add to the appointment.
"I know that you are the medical expert, and I respect that. I wouldn't be in your office if I didn't think you had that training and the experience to help me. But I'm the expert on me. I'm not going to pretend I understand everything about this because I don't, that's why I'm here. All I'm asking is that you would just listen to what I know about me."
Again, didn't use those exact words, but you get the gist of it. And I think that is the first time I've said something like that to a doctor. I can't say that was *the* moment the tension lifted, but it certainly helped. That appointment ended a complete 180 from how it started. And I am so thankful for that!
I desperately need a local allergist on board in case I'm admitted anywhere and just to help me manage my currently-out-of-control symptoms. The appointment ended with my new allergist saying he was going to contact my specialist in MN and talk with some of his colleagues at the Cleveland Clinic about treatment options, and he would get back in touch with me after he did that. I would call that a successful appointment!
And it happened because we realized that we both bring a different perspective and were willing to meet in the middle. He's the medical expert, and I'm the expert on me.
As a rare disease patient, I understand that doctors may not have heard about MCAS or know anything about it. To be honest, that scares me at times. I carry my medical information with me at all times. I wear a medical bracelet, my backpack is labeled with a medical symbol, my medical information and Epipens are in well-labeled bags, and I still wonder if that is enough. I have severe food allergies and multiple drug allergies. My body does not react normally to some "routine" ER treatments for some of my symptoms. While I do my best to be prepared, all it takes is one doctor not willing to follow my protocol for me to be in danger. There have been times when I've been in the hospital and it has been like playing Russian Roulette because it only takes one doctor not listening to seriously endanger my health.
I'm not trying to pretend that I know more than the doctors. I know they do have a lot of knowledge and have gone through school and spent years working to be where they are. All I'm asking is for them to recognize that for as long as they've been in school studying, I've been living with my condition and been learning about myself. Treating any condition, but especially rare diseases and chronic illnesses needs to be a collaboration.
So I'll end with this:
For rare disease/chronic illness patients:
Give doctors the benefit of the doubt. I know it's easier said than done, but try to give them a chance. They are the medical experts. Respect them for that. Acknowledge that you know they have a lot to offer. Let's be honest, we wouldn't be going to doctors if we didn't absolutely HAVE to, so just remind them that we need them. And be open. They may present something you had previously brushed aside or something completely new. At least be willing to discuss it with them. We want them to listen when we ask for something, so let's give them the same respect.
For doctors/nurses/etc. treating us:
THANK YOU! We need you. We know you are the medical experts, but we just need you to understand that we are experts too, just of ourselves. You see us in the ER or every few months in your office, we live with ourselves 24/7. When we tell you something does or doesn't work, please believe us, even if it sounds crazy. We don't want to be scared to go to the hospital because we are worried that we will not be treated properly and are afraid for our health. All we are asking is for you to be willing to listen to us and remember that we are the experts on us.