Month: September 2016

I don’t hate doctors.

I think that’s an important statement to make, especially for those who know what my experiences with doctors have been like. For the uninitiated, I saw seven different GI doctors (excluding ones I encountered while hospitalized) between my diagnosis of ulcerative colitis and my surgery four years later. Some of this was due to moving multiple times. Quite a bit of it was because I was not receiving good medical care. And those are just the GI doctors I saw. Overall, I have had many experiences with doctors over the past few years, and can honestly say that my experiences have left me with a distrust of and even a fear of doctors.

It’s gotten to the point where I know my fears are becoming a problem. I’ve had some unusual health issues lately and scheduled an appointment with my primary care doctor. Now, this doctor has been in my life on and off (mostly on) since I was 15 years old. She has a family member with UC and has always understood how challenging it is. She knows all about my ongoing health issues and my confusing medical history. Yet I found myself thinking things like “What if she thinks I’m making it up?” and “There’s no point. No one can help me anyway.” I realized that I have internally come to the conclusion that doctors will not be able to help me and, more importantly, will not want to help me. Even though I knew I needed help from the one doctor who has always helped me, I was still afraid.

My fears turned out to be unfounded– she diagnosed one issue immediately and sent me for several tests for the others. I still feel bad that I ever felt that way, though. When none of the tests showed a reason for my other issues, I immediately thought again, “Well, now she’ll think I’m lying.” In reality, I have another appointment to see her this week, and I know she’ll continue working to find out what is wrong with me. But I do understand why I feel this way. There have been many, many times when I have been brushed off, ignored, or even lied to by medical staff. One time is bad enough, but when it happens again and again, it builds up and makes even routine medical experiences feel traumatizing.

My PCP has always been honest with me. She has always tried to help me. I have to admit, though, that a part of me is waiting for the day when I become too complicated for her and she stops believing me. That has happened to me before with other doctors. If I hadn’t been treated that way previously, I don’t even know if it would occur to me that it could happen. I feel like it’s unfair for me to even be thinking these things about a doctor who has been so kind to me. I wish doctors understood that every time they ignore a patient, minimize symptoms, or invalidate experiences, they are setting the patient up for a lifetime of not trusting medical staff.

Have you ever had an experience like this? Share your story in the comments.

Sarah

***Not every medical encounter I’ve had over the past few years has been negative– many were fine and some were even good. But I have also had many bad experiences, and those particular experiences are what I am writing about here.***

Today is my five year anniversary of being diagnosed with IBD. It’s also my 28th birthday. This is the order I remember them in.

I made it this far. With all of the health problems I’ve had in the past year, I joked more than once that I was going to join the 27 club. I probably wasn’t artistically gifted enough. In all seriousness, though, I almost didn’t make it past April. If I had gone to sleep instead of going to the hospital, I probably wouldn’t be here right now. I still don’t know how I feel about that.

It’s tough to have such a combination of events on the same day. Reminders of a beginning and an end. Your birthday says: Congratulations, you lived another year. But after diagnosis, always that reminder: you lived, but for what purpose? You’re here, but should you be?

I’m certainly not suggesting that chronically ill people have no purpose, or should not be here. Everyone has a purpose. I just haven’t found mine yet. Every time I think I’ve finally got it, I lose it again, washed away as quickly as if it was never there at all. And in turn, I was never there at all.

It’s strange to get older without anything to look forward to. Even stranger when you don’t know who you are anymore. I don’t know who I am anymore. Sometimes I feel that there is nothing on the inside, no personality, no soul. I think that’s part of why I get so upset by how I look on the outside. That’s all I am anymore, and it isn’t enough. I no longer recognize any aspect of myself. I no longer have hope that things will get better in this new year, because they can’t get worse. If chronic illness has taught me nothing else, it is that things can always get worse.

But, 28, I’m willing to be wrong.