3 reasons I’ve become less sensitive to medical anxiety

Since my PNH diagnosis, I've found ways of handling my once-debilitating fears

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by Erin Fortin |

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For much of my life, I had a bad case of “white coat syndrome,” which, according to the Cleveland Clinic, is when your blood pressure rises because of “the anxiety of being around doctors in white coats.” I was terrified of going to any type of doctor because anything wrong might require an invasive treatment.

In 2016, when I was told I needed a colonoscopy, I felt as if my world were ending. I had major anxiety when I got the news and for each day until the procedure. When that day came, the nurse who took my vitals told me she needed to discuss them with my doctor because my high blood pressure might make it unsafe to continue.

In this situation and for any medical news I’d get, I had difficulty understanding and processing that whatever I was told, be it a diagnosis or an order for lab work, the goal was to keep me healthy. My mind was focused only on the possibility of pain rather than the importance of listening to and taking care of my body.

Going to a doctor, clearly, was never my first choice of a good time. But it became a part of my lifestyle after I was diagnosed with my rare blood disorder, paroxysmal nocturnal hemoglobinuria (PNH).

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Reflecting on the past few years since my diagnosis, I recognize I’ve made a mental shift, and I don’t know if I should be happy about it or feel sorry for myself. I’ve become desensitized to medical anxiety — maybe not completely, but almost. I’m happy about it because life is a lot easier without that imaginary weight on my chest, but I also feel sorry because I’ve gone through many medical traumas to get to this point.

My gallbladder removal is an example of this shift. Before my diagnosis, I would’ve found it debilitating to get that news, but afterward, I felt nothing. I didn’t feel fear or anxiety that night, the next day, or even the night before the surgery. I was joking around with my mom and husband in the hospital waiting room before they called me back for the procedure.

Shedding my anxiety

I think there are three reasons I no longer have my old fears.

For one, I know that any anxiety I feel before a medical experience is not going to change the outcome. Although it’s perfectly normal to feel it, I remind myself that the pain won’t change, and nor will the results, recovery, or diagnosis. Why should I exhaust myself mentally leading up to such an event when I know I just have to deal with it?

Secondly, I know I have the strength to deal with whatever comes my way, as I’ve proven by all I’ve been through. After my diagnosis, I had many people encourage me by telling me how strong I was. But I’d brush it off and think, “I’m not strong. I just don’t have a choice.”

Today, after going through multiple procedures, Soliris (eculizumab) and Ultomiris (ravulizumab-cwvz) treatments, IV infusions, and blood draws, I’m fully empowered to believe that yes, I am strong. Although I may not be happy to deal with medical setbacks, I know I can handle them.

Lastly, I know that my nervousness in these cases is only temporary. This statement might sound odd since PNH is chronic, but I remind myself that certain moments will come to an end. Say, for instance, I’m not feeling well and having a bad day of PNH symptoms. I know that day will be over soon, and I hope tomorrow will be better. When I began my initial treatment schedule, an IV made me anxious. But now I know the needle pain only lasts a few seconds.

I’ve learned that I don’t have to be brave 100% of the time; I just need to be brave in the moments when anxiety creeps into my body. And the more and more I become desensitized, the less I feel that anxiety.

Note: PNH News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of PNH News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.