Facing the Stigma of Invisible Illness

An invisible illness is just that - invisible - unless you are the one experiencing it. Just like the bacteria that infected my body, most of my symptoms are invisible to the naked eye. Only I am the one who feels the numbness in my limbs and the pain throughout my entire body. My gait appears normal, but only I feel like a zombie inside, and lifting my feet for every step is a daunting task. I look well, so that must mean I am well...right?

Unfortunately, for me and millions of people around the world, this is not the case. Right off the bat, the stigma of merely looking well delayed my diagnosis, treatment and subsequent care. My family and friends had to take my word that my symptoms were happening. Doctors dismissed them as hypochondria, Munchausen syndrome, or depression and anxiety because there was no way someone who looked like me could be sick. It took many doctors over six years to figure out that I was suffering from late-stage neurological Lyme disease. We missed six years of critical treatment time that could have reduced my suffering immensely.

Having an invisible illness is not only difficult medically - it is difficult mentally.

At 19 years old, I lost nearly 30 lbs. in less than one month to the point of every bone showing. I was frightened by the fact that I was emaciated and couldn’t seem to control the weight loss, but to everyone else, I looked incredible. Clothes fit me like never before. At 5’11”, I was wearing a size zero and being compared to models. To my friends and family, I was the best I had ever looked.

In my invisible world though, I couldn’t stay warm for anything. I was shivering in the hot and humid summer months, my hands and feet blue and purple from the lack of circulation and low body weight. My hair was falling out in clumps. I was hardly able to eat without a serious adverse reaction or walk a short distance without lying down. And this was before I started Lyme treatment, which resulted in a copious amount of GI issues and even more weight loss.

Hearing how wonderful I looked when I felt so physically and emotionally drained took a toll on my mental health. Having had to drop out of a prestigious university and unable to work, I felt as though the only worth I had was being told I looked “beautiful” and “thin.” Even after my diagnosis, empathy did not follow as I had hoped. To close family and friends, it still seemed as though I was exaggerating my symptoms. Lyme is a controversial and complicated disease that wreaks havoc on your entire body. There is no vacation from it. There may be days or even weeks where my symptoms lessen, but there is no break from the pain and suffering. I learned how to put on a happy smile and brave face, always telling people I am “fine” or that “tomorrow will be better” because that helped them feel better.

For a while, I started feeling completely worthless.

Now entering my seventh year of Lyme treatment, I am finally starting to look healthy, even to myself. The bags under my eyes have disappeared, my hair is finally growing back and I have put much-needed weight back on my body. I have finally started looking healthy because I have finally started feeling better. Yet, I am no longer complimented on my figure and when I walk into a room, no one stops to tell me how wonderful I look.

I still struggle with my health and my inability to work due to the severity of Lyme disease, but I’ve slowly been learning to reevaluate my worth and appreciate my body for what it as done for me. I am stronger, I have survived days that most people could not, and I have the strength of my body to thank for that. Over the years, I’ve learned how to be more honest, more open with how I’m feeling and clear about what my needs are. Having an invisible illness means I need to advocate for myself in ways I never thought I could. Resilience is something chronic and invisible illnesses will teach you, whether you want to learn it or not.

I’ve learned how to appreciate the compliments, while not basing my worth off of them. My skin has grown thicker, and I now understand that I have the right and power to remove myself from situations that do not benefit me and I no longer tolerate not being believed. I am the only one who knows how my body feels. I remember how it used to feel when I was healthy and how it feels now that I am not. I believe in myself, the feeling in my gut, my intuition and the signals from my body. I have become a stronger version of myself because this illness is not invisible to me.