Something I never really understood…

I’ve had Behcet’s for over 10 years, but have only been diagnosed for the past three years. I’ve always wanted to be as educated as I could regarding Behcets. Growing up, I was always a healthy kid, so the whole idea of being ill has been new to me. I received a crash course in how to let others take care of me in 2010, when surgeries, blood clots, and complications landed me in the hospital, and then living with my parents (who were wonderful) for almost a year while I recovered. I’ve learned how to manage medications and refills, time my injections every 12 hours, remember weekly or biweekly immunosuppressant injections, track symptoms, and work through pain. I’ve learned how to tell people that I’m not as healthy as most 24-year olds. I’ve learned how to ration my energy throughout the day and the week so that I can accomplish the things that need to be done in everyday life.

While learning how to manage the physical manifestations of my illness, I’ve also attempted to learn how to manage the psychological implications of life with a chronic illness, and life with chronic pain. I’ve read many, many books written by people who live with chronic illness, people who have died from an illness, family members of those who have had chronic illness, and doctors to patients with chronic illnesses. Many of these books have a chapter dedicated to something along the lines of “I have an invisible illness, so no one around me can see how sick I am.” I feel as though I have begun to really process and work through many of the psychological issues that go along with Behcet’s, however, I have never really felt as though I wanted those around me to see how physically ill I may be.

I have many, many surgical scars. I had a fasciotomy in 2010 that doctors were unable to close, so the outside of my right leg is largely scar tissue. I have one scar that runs from above my right knee to below my ankle. I have chosen to always wear long pants to cover up my scars. Even when the surgical wounds were new and still healing, I did not allow many people outside of those who were caring for them to see them. I don’t view my scars as “battle wounds” that I have won, I view them as a constant reminder of where I have been. I have been hospitalized for weeks at a time. I have been in ICU. I have been in wound care clinics. I have worn a WoundVac in public. That is not the part of my life that I want to remember. I see the scars when I shower, when I change clothes, and when I go to the bathroom, and they remind me of the journey that I have been on. I choose not to allow others to view my scars, because where I have been is not the most important part of my journey – the most important part of my journey is where I am going. (To be fair, part of my decision to not show my scars also centers around not subjecting myself to constant questions and looks from those who can see them, but that is a different blog.)

I guess what I am trying to communicate is: I don’t want other people to see what is going on inside my body, because I want to be known for so much more. I don’t want other people to see that I have an illness that gives me mouth ulcers, genital ulcers, skin lesions, blood clots, aneurysms, and avascular necrosis. I want this illness to be private, and I want to be able to control what other people know. Certainly, there are days when a particularly rude comment makes me wish another person could spend a day in my shoes, but overall, I am very glad that my illness is one that can be hidden until I choose to share it.


One thought on “Something I never really understood…

  1. Most of the times I read about people struggling with BD, including yourself, I always think about how lucky I am. I was diagnosed within three years of being symptomatic, and sometimes I forget how lucky I am. Had I not been diagnosed so early, remission would be a vague notion, and disease progression would be so much worse. You’re writing about this disease is so beautiful, and your strength is admirable. Please keep chuggin’, and I wish you a happy New Year, with fewer flares, and MUCH better health!

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