This long journey grabbed me and pulled me along in September of last year. I was constantly exhausted. I would get up, get dressed, walk to class, feeling as though I had just eaten four huge plates of Mexican food. It left me feeling heavy and lethargic.
That was only the start.
I started losing hair, was in extreme pain every waking moment, and was unable to sleep. My teeth would hurt, my muscles were swollen, my skin was very orange, and my kidneys were failing. My heart hurt every time it beat. I was covered in a rash from head to toe. I was constantly running a fever. I woke up with a yellow paste sticking my tongue to the roof of my mouth. I had severe migraines that would make me throw up, and I would wake up and just hug the toilet throwing up.
My once so athletic and joyous life came to a screeching halt, and all I could do was cry.
Two 1:00 a.m. hospital visits proved to be of no merit because they would just pump me on painkillers and tell me that something was seriously wrong – but they had no answers.
That was really stressful. At the same time, though, I did not want a diagnosis because I felt that if I didn’t have one it wasn’t really that real.
I ended up having to move back home from college around Thanksgiving. I was fortunate enough to have absolutely amazing professors that allowed me to take my finals the following semester and didn’t require my attendance.
My primary care physician didn't even have answers for me. She just blamed it on stress. It definitely was not.
Time moved on, and about a week later, my grandmother took me to the hospital here at home where they finally made a diagnosis: my TSH level was 250. For reference, the normal TSH level is less than four. After that was settled, my health started getting on track a bit more. I go to many different doctors and specialists regularly and I am in therapy for my knee injuries due to the swelling.
I have Hashimoto's, Graves, Rheumatoid Arthritis, Lupus, and Sjogren's. I still live in constant pain. Most days, it’s a struggle to move, everything aches like I am 85 years old. It is difficult and leaves me breathless just getting dressed. I am light-sensitive and will slap or pinch myself to redirect the pain from other areas.
I have depression and anxiety, but you would never know that.
It’s a lifestyle and I am just adjusting.
Don’t let people tell you that you don’t look sick, so you should be normal. Or that you are too young to have this. Whoa no way?! Really, I'm too young to have this??? I agree, but I still do. That used to get to me and really hurt my feelings. They had no idea – not even my own mother.
Everyone assumes that just because you look ‘healthy,’ you must be. They don’t feel the pain and just assume that I am making up excuses. They cannot understand that some days the extreme discomfort is milder. They don’t comprehend the ‘good days and bad days’ situation.
I spend so much time agonizing over how others will perceive me when I am having a good day that it utterly obliterates it. Yes, I was faking the doctors telling me that in two weeks my entire body was going to shut down on itself and slip into a coma if they didn’t find the problem.
I have a therapist to help me through all of this. You can’t tackle it without support. I know everyone doesn’t have that access, but maybe enlist the help of a professor, best friend or someone in the counselor’s office at school. You will lose yourself if you keep trying to people please with such an illness.
Look at Selena Gomez – even she had to take a break.
Do not be afraid to make time for you. I cannot stress enough how little their opinions matter. It is hard enough without others projecting their ignorance and belittling your struggle. When you get to where their comments no longer phase you, please let me know. I am still fighting that one, but I cling to the hope that one day, I will overcome it.
Not all disabilities are seen. You really never know.