My Complicated Feelings When My Health Condition Becomes Visible

In my experience, there is nothing worse than a medical condition you’ve felt terrible about suddenly becoming visible and there is no denying that you have it. Over the years, I’ve grown to love every square inch of my health and self, but these health conditions I endure put my many beliefs to the test.

Now that it’s summertime, I’ve been unbelievably self-conscious about my appearance. About a month ago, after having gone through months of long-haul COVID, I was then diagnosed with Behcet’s disease, an autoimmune form of vasculitis.

It’s disheartening and painful, and when I’m in a flareup, the world is dead to me and vice versa.

During these flare-up periods, I have the tendency to feel like my health is my worst enemy. If you also have many diseases, such as heart and lung disease and autoimmune diseases, then you can probably empathize with me when I say that I feel like my symptoms and conditions have an agenda: to keep me down emotionally and physically and wreak utter havoc in all aspects of my life and world.

I’ve had this paralyzing thought while I was running around Croatia and Paris in recent weeks and struggling to enjoy myself despite not being at my healthiest levels of energy and strength. I’d had another arrangement planned for those trips that didn’t pan out the way I’d hoped or had initially wanted. And I knew all my health struggles in the previous few months caused this colossal turn of events I couldn’t have anticipated.

Though everything went well and my work and vacations were major successes, my heart was somewhat dinged and shattered. My health had, yet again, affected and changed the course of something it shouldn’t have. This has been a recurring problem for me.

Good things will happen in my life but last only a short time. Then, I’ll get another diagnosis of some condition or disease and I won’t be able to lie or hide its impact. Not only do my health issues affect me physically, but they also cause turbulence in my personal life as well.

When I was in Croatia, I had to do a lot of work at a scientific medical conference for those with the rare disorder, 22Q11.2 deletion syndrome or DiGeorge syndrome. All the while, I was taking an antibiotic to resolve the uncomfortable stomach discomfort I was having and I’d developed a severe reaction to it, as I do with most antibiotics. I broke out into hives, but already had a small rash from the vasculitis and was beside myself about how I looked or thought I looked.

My mom and everyone around me kept saying that I looked fine and it was all in my head. Your family and friends will want to uplift you and tell you what you want to hear, but I know when I don’t look my best. Throughout most of the conference, I wore light khaki-colored pants though it was 90 degrees outside. I stayed in the cold air-conditioned hotel most of the time when I could and avoided baring my arms and legs.

Feeling like I have to hide parts of myself goes against my belief systems about body positivity and body shaming. But, these health conditions make it difficult to expose to others my flaws and insecurities while trying to make everyone else believe I’m totally fine about how I look and feel (but am far from fine about those things).

I’m comfortable wearing pants regardless of how hot it is outside. I don’t need everyone I encounter asking me if I’m OK and healthy when I am but don’t quite look the part. It dawned on me that diseases, visible or not, aren’t flaws or something we should feel insecure about, but I do and it takes a lot for me to restructure these thoughts in my mind.

When a disease becomes visible, it becomes more real and harder to live with. I’ve found some creative healing solutions now for dealing with the discomfort and making this disease less visible and impactful. What I really need to focus on is my mind and thoughts about my body and appearance. I know, deep down, that my health is not the enemy; it’s just something I live with and have come to embrace through my art and work.