Feeling Safe and Heard With Your Doctor
Last updated: October 2022
When I first got diagnosed with chronic hives it was very crazy. Even though I advocate for acceptance, it was very difficult to accept that there is a chronic disease and there is no treatment for it. I can remember my first diagnosis day like it was yesterday. I lived in New Jersey, and at some point, I even thought “it is the cold weather”! Which is crazy because my chronic hives first came during the summer.
My body was always very sensitive to the sun and the heat, but I hadn't experienced the hives yet. Fast forward 3 years later: I moved to Florida and I took the chance to ask for a third opinion. LOL….yes! You are reading that right. In New Jersey I saw different allergists, and now I was like, let me try one more thing.
So here we go! Up to the rheumatologist. The rheumatologist did a couple of tests, and I needed to go back to him within 2 weeks.
The whole experience with the rheumatologist was something else! It all started with the lab work. I received the results of my lab work via an application, and I saw a lot of strange numbers in red. Of course I panicked and called a friend who is a doctor too. We discussed the results, and he gave me a list of questions to ask the rheumatologist.
Two week wait
I called the office and asked for the rheumatologist or nurse, and they were very rude! Every time that I think back, it makes me feel so mad! The first time they told me I can’t talk to anyone right now and need to wait for my appointment, which was in 2 weeks. That is crazy! I saw strange things, so I wanted to know what was going on. I called again!
The second time I told the lady who answered the phone that I was very worried and if I can’t talk to someone that I will find another doctor. She transferred me to the nurse, and we had a conversation and she stated that the rheumatologist told me that there is nothing to worry about and that I need to wait.
Of course, I started to look for other rheumatologists in my area and asked some friends what to do with the results. A friend of mine was able to explain the results and that gave me a much better feeling. Only thing I still needed was the X-ray results and a copy of the X-rays.
After two weeks I went to the doctor and decided to say nothing, ask nothing, just ask for the X-ray. The doctor came in the room, he looked at his computer and it was like he was looking at an awful picture. Then he looked at me again and said that there is nothing I could do for me and that I needed to go back to the allergist.
As I promised myself, I asked him if I can have my results of the X-rays. He looked at me in a very strange way and asked me if I have any questions. I told him, I have no questions, but I have feedback. His assistant sat down, and they both looked at me waiting for what I wanted to share with them.
Now that I had their attention, I shared my thoughts with them: “Doctor, you are not selling food at the store! You are running an office as a specialist for people with very serious health conditions. If someone calls your office, it is because they are very concerned and not because they want to place an order! If a patient doesn’t feel safe or heard, they will not be coming back!” His response was shocked and uncomfortable.
Some doctors don't understand what patients are going through. And you don't have to be available 24/7, the only thing I'm asking is that you try to understand your patients and try to give them answers so they can feel comfortable while waiting.
As you might know, that was my last time talking to that doctor and going to his office. I think that it is important to know that when you are looking for answers in your chronic hives journey, you need to do this with people who care and who are respectful. There are thousands of rheumatologists in the USA, so you have a lot of choices!
Do you feel safe and heard with your healthcare team? What could your doctor(s) do better? Share with us below!
How well do you feel you manage your chronic hives?