The story of Sarah
Everyone has their battles. Everyone gets tired, and everyone gets unhappy. But it’s difficult when you are dealing with health struggles that are out of your control.
Those who are dealing with immune diseases can understand. We are in a constant fear of our own bodies. We have difficulty explaining how our body hates us. And we are often silently persevering.
In honor of Rare Disease Day, I am going to do my part and stop being ashamed. Here is my story:
I was diagnosed with Behcet’s Disease about four years ago after dealing with symptoms since I was a young girl. I didn’t catch it nor receive it (don’t worry, you can’t catch it either.) I may have been born with it, but I don’t really know many details of my childhood health history. I never knew these issues were irregular and I always tried to stop complaining so much. But really none of it was normal, I was in pain and I was too scared to talk about it.
I look back now and reflect on the power of perseverance and self-talk. Because even in your darkest, most secret moments you will help yourself overcome.
Today the pain I feel ranges, yet it’s constant. Most of the time, I just get frustrated because my energy is usually drained. It’s so lame when you want to go out and hang out with your friends, but all you can think about is sleep.
I was diagnosed in the prime of my college career, right when the personal and professional stress was at an all-time high. I was working a full-time job while attending full-time college and handling my internship. My body could not handle any more pep talks. The stress was finally too much.
I had the worst flare of my life. I could not walk, my roommates were the only ones around and I was in and out of the emergency room. I couldn’t tell my teachers or my supervisors because I was too embarrassed. I couldn’t even tell my friends or family. All I wanted was my mom to tell me it was ok, although I had no idea what “ok” meant anymore.
I was at my weakest most vulnerable spot in my life. Tired, lonely and hurting, I could not understand why I was being trapped. My body hated me and I couldn’t figure out why. What did I do to cause this?
Fast forward two years, numerous solo appointments with specialists and thousands of doctor bills later, I finally had an answer and no relief. To be diagnosed with Bechet’s Disease, you must show a sample of some existing symptoms – there is no test. It took almost two years to get diagnosed on a guess.
I was prescribed powerful steroids that made me feel weak, miserable and gained weight. The mixture of medication helped temporarily but I felt like a zombie in other ways. The lesions on my skin and in other places went away but I felt like I was losing it.
Once more I was reminded, you must listen to your body.
I realized that the medication worked for me while I was at my worst, but it was not a long-term solution. I stopped taking the medication and began identifying when flares were being triggered. Time and time again, stressed-induced activities (work issues, homework, finals, lack of sleep, personal drama, etc.) were the factors.
Now, stress-management for me has been the key. Though I do still deal with flares regularly, they are manageable. They may come back.
This is a condition that I will be living with for the rest of my life and I am still learning how to respond to my body, but I am so proud of where I have come. I have begun to understand the importance of being mentally and physically healthy.
You will always be humbled win you look back on perseverance, even if you were silently struggling.
Please, share your story if you have one.
*Find others with Behçet disease on RareConnect, the online platform for people affected by a rare disease.