Advocating for Yourself

It’s a journey trying to stay consistent with CPAP. One thing that has helped is finding the right doctor. I remember when I started CPAP therapy, the doctor I had was unwavering in starting my CPAP at 20, the highest setting on the machine. It was the most miserable time of my life, until I learned that advocating for my health was important.

Advocating for yourself

Having it on was equivalent to sticking your head out of the window while on the highway doing 80 miles an hour. When I first started with the CPAP, I cut my cornea with the hard bar in the front of the full-face mask. I tried nose pillows but had to use a chin strap because I’m a mouth breather. I found a way to still open my mouth, so the air was going in my nose and out my mouth.

You must be your own advocate. If a doctor is not actively trying to work towards the betterment of your treatment and sleep health, try a new doctor.

My first doctor

When I first started CPAP therapy, I had a doctor who would spend less than 5 minutes with me every visit. I didn’t feel heard. No matter what was going on, the only advice was to keep using the CPAP. If you can’t sleep because of insomnia, take a pill, put it on anyway, and lay there until you fall asleep.

After I cut my cornea with the mask, there was no concern. I kept on trying. Having a doctor like this made me feel like I was alone navigating something that I didn’t really understand. It was causing more issues than helping. I got to the point where I got tired of paying to be ignored, so I just quit all together because I felt like it was the only option.

My next doctor

My new doctor actively works at trying to make this treatment better. I had an appointment yesterday and talked about dry mouth, daytime sleepiness, and using my machine.

Since I got over COVID-19 and I’ve used my machine every night, he noticed there were still a lot of leaks. This was causing more events per hour and contributing to the dry mouth. My machine pressure is currently set between 6 - 10. So, to make it more comfortable, he put in the order to have it changed to 6 - 8 to see if we can get the leaks down to make the therapy more successful. He’s trying out all the options we can before setting up another sleep study to explore getting a BIPAP instead of the CPAP.

Conclusion

I was used to just going by what the doctor said until it got to the point where I just wanted to give up. Why? Because it felt hopeless, and I didn't feel heard. The biggest thing dealing with chronic health conditions like sleep apnea, fibromyalgia, and insomnia I had to learn, was to advocate for myself.

I had to learn that, if I wasn’t being heard, to find a new doctor. The difference in changing doctors has finally got me to a place where I can use my CPAP and tolerate it daily. It doesn’t come without issues, but this has been a tremendous step in the right direction.

Now, I have a doctor that listens, makes the best choices to help me succeed with sleep conditions, and is constantly working with me, instead of against my treatment.

How do you advocate for yourself with your health care professional? Please share your experience in the comment section.