The Anxiety of Advocating for Yourself

One of the constants in my years of being chronically ill is advocating for my health. It’s a struggle for many reasons and can create enormous anxiety. For me, I feel intimidated to speak up for myself to professionals. These doctors and surgeons went to years of school and here I am, not a professional, just a woman living with a disease. But I am learning that I am so much more than that. When we live with these illnesses, we learn things that these doctors don’t. They can see our organs in ways we will never see, but they will never feel what we feel every second of every day.

Being dismissed by your doctor

It’s common to feel dismissed, which alone can be hurtful. But on top of that, sometimes when I feel an issue is wrong inside of my body, they don’t even want to give me the help I’m requesting. And when I write this I think, "How ridiculous is that?!". There’s been so many times I’ve requested a scan and been denied because my doctors think I’m wrong. So many times I’ve said an issue I have is from endometriosis but they don’t listen and just send me to yet another doctor. Which leaves me to wonder, what does it really take to be listened to?

An example of this: There was a time I kept having flares that I hadn’t experienced in over a year. Obviously this would indicate something was wrong so naturally, I contacted my doctor. Right away, he dismissed my suspicions that it was more endometriosis that had grown. He instead insisted it was a hernia. To me, this sounded unlikely for many reasons. He ordered an ultrasound anyway to check for one but before I could even get it, I ended up in the ER because an increase in pain. While in the ER, they did a CT scan and ruled out a hernia. I immediately emailed my doctors team, demanding an expedited MRI. The increase of pain and the unknown of the cause was terrifying. Yet again, I was denied the MRI. He wanted me to still get the ultrasound to rule out this now imaginary hernia. I had to wait a week only to have proved him wrong again. Another week later, I got the long awaited MRI, only to have seen large amounts of endometriosis on my ovaries.

What was worse than not being listened to was actually the feelings I felt while asking for the MRI so desperately. It made me feel like I was being annoying or even sometimes that I was overreacting. We shouldn’t feel afraid about speaking up for ourselves or demanding treatment. Of course, not every time do we prove a doctor wrong. We will sometimes be mistaken about certain pains we have. But by all means, this does not mean we should be made to feel like we don’t know our own bodies.

The fear of standing up for yourself

Sometimes, I find myself having an anxiety attack when I go to say that I disagree with my doctor. Going back to the MRI story: After I sent that email, my heart began to race. I kept having that fear about what my doctor and his nurse would think of me. Would they think I was crazy to assume I knew what was wrong with me? Would they be annoyed that I was bothering them by emailing about an issue they thought they knew the answer to? But I shouldn’t feel like I’m bothering my own doctors. So , I’m learning to just let it go. It’s not as easy as it sounds but it’s a process. I’m constantly reminding myself  that they are being paid to help us. Their job is to ease our pain and our job, as hard as it is, is to advocate for ourselves. So, who cares how they feel when we disagree with them? We are showing strength and determination. And though it’s scary, the more we do it the better we will be.

The fight will continue

Without a doubt, I believe we will always struggle with the fear being heard, even if it’s just a small amount. I am left wondering how doctors can help us to the best of their ability if they aren’t taking our opinions into consideration. All this being said, there are still great doctors out there. Even mine, despite my frustrations with how some things have been handled, is the best one I’ve had. There are times I do feel heard and sometimes I don’t. But in time, I have become more comfortable talking to him. Explaining my feelings, fears, and opinions. It’s important to build that relationship with your doctor. A big warning sign is if you have never been listened to and are in constant disagreement, it’s probably time to find someone new. Another important thing is your doctor admitting when they are wrong and encouraging you to speak up. Advocating will probably always be a bit scary but it can get easier. And now I’ll leave you with this, remember your treatment is all about you and your needs. This is your life, not theirs. The fight to the right care is what you deserve and you can and should bother whoever you need to get it.

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