Tips to Advocate for Yourself at the Doctor’s Office
Getting my diagnosis, has been a bumpy ride for me. I had to see numerous doctors. Some that saying my mental health was the reason that everything that was happening to me. Doctors disregarding what I was telling them. All these experiences can make us as a patient feel lost and a little crazy. I know myself, I have been there many times. It can also make your mental health worse because your doctor is not really listening to you and your needs. You are the patient and it’s important that you are taken seriously.
Along my journey I have heard it all:
“Everything looks fine.”
“You just have anxiety.”
“You are overweight."
“It’s just fatigue."
“It’s all psychological.”
“Have you seen a psychiatrist or psychologist?”
The best one I heard was when I saw my first rheumatologist: “Sorry, It’s not rheumatology related.” But how? No proper testing was done. No MRI, no proper blood tests. Just in and out of the office in 5 minutes.
This disease has taught me one thing. It’s not to give up and to fight. Here are some tips on what has helped me through my journey of diagnosis and still helps me every time I see my doctors.
Finding the right doctor
Finding a doctor is just like shopping. I had to learn this the hard way. If you see your doctor is not listening to you and disregarding everything you are saying, then it’s time to move on. Research online - that’s how I found my current rheumatologist. Ask in the groups, in your city on finding a doctor that is experienced in your symptoms. Each doctor has there specialty. If it’s not their specialty, ask to be transferred to someone that has more knowledge more on your disease. Finding the right doctor for yourself has to be the right fit.
Write everything down
It took me a long time to start doing this, but it makes a big difference. Write all your symptoms down, as much as possible. Even write down the questions that you want to ask your doctor. Don’t be afraid. You have a disease and there is nothing wrong with being prepared every time you see your doctor.
Bring someone; a significant other, a close friend, or even a family member you trust to your next appointment. Their presence can help validate your struggles with your symptoms to your doctor and take you more seriously. It can also be a deterrent for some doctors to not speak over or dismiss you. You can use all the support, as it can be very emotional at times. How many times have I left the doctor’s office with tears in my eyes? It can get overwhelming
I have been on several medications. Actually, a lot, and I am not ashamed of it. All medications have side effects. If you decide to take this road, it’s important to find the right one for you. It can take several trials, until you find the right one. It’s important that you advocate for yourself. Even if your doctor has the educational skills, the background, or judgment calls remember you know your body best. You have to pay attention. Once again write everything down to be able to see what is helping and what is not, to be able to let your doctor. Don’t forget after you leave the doctor’s office, your doctor is not with you to see how the medication reacts with your body. Everyone is different, all treatment plans are different for everyone. What will work for one, might not work for you.
Finding the right team
Having a chronic illness can sometimes come with many other conditions and sometimes also affect your mental health. I recommend finding a doctor that is willing to work with other specialists as a team. This way it will be easier to come up with the proper treatment plan that can help you in getting a better quality of life, or better yet, remission.
This is a hard one for me. It took a lot to get to this point and accepting on getting more help. I tried another center with physical therapy, occupational therapy, and even acupuncture. But they didn’t understand my condition well, and I felt like it wasn't helping. Every time I was going in, I felt misunderstood. Then my rheumatologist mentioned a rehabilitation center where they specialize in rheumatology and neurology diseases, especially with chronic pain. As they called me in for my evaluation, I just knew this was a place I had to continue. I didn’t have to explain much, because they knew exactly what it meant to deal with axial spondyloarthritis. So I am excited to see where this will bring me in my journey.
It is your health and your body you are dealing with. You know what is best for you. You know your body more than anyone. I had to take a step back and really pay attention to my body and what was going on with it. Yes, mental health is part of this disease. It’s hard living with pain and so many numerous debilitating symptoms. So don’t be afraid to speak up and advocate for yourself.
Can you tell when a flare is coming?