I was diagnosed with rheumatoid arthritis in 2011. It has been a really long journey to get myself to where I am comfortable to share my whole story. But, for those that are ready for the unabridged version, I present it to you now.

It was a not so typical day for the life of a college student- I was selected to host the UConn Alumni Association awards ceremony. Throughout my day of preparations for this prestigious event, I noticed a strange pain in my shoulder. I brushed it off as a potentially pulled muscle. However, the pain continued to increase throughout the day, to the point where I struggled to shower and get ready for the event. I then started to think my shoulder was dislocated. Every time I left the stage, I was asking my peers to help me pop my shoulder back into the socket. My brother was visiting that weekend for the big homecoming game, so I endured the pain until about 4 am. I awoke with the worst pain I had ever felt. My brother and roommate took me to the emergency room for x-rays. The diagnosis was tendinitis, and the result was pain killers and my arm in a sling. After that day, my shoulders continued to have reoccurring shoulder pain for almost a year. But, since the pain was not constant I didn't worry too much on my travels around the world. 

On move-in day of my senior year, I felt like I had pulled a muscle in my right foot. Once again, I didn’t worry too much about it until the pain did not go away; instead, it spread to the other foot. I began taping my feet every day to ease the pain. By Thanksgiving, I could barely walk. By Christmas, I couldn’t bend my fingers. My family and I went to Disney World for the holiday season, and trying to walk around the park was a major challenge. I never thought I would consider using a wheelchair to get around a theme park at age 21. I shared a bedroom with my sister, who witnessed me punching the walls in my sleep. Could it be that I was actually injuring myself when I was not consciously awake? Or, was the pain so bad, that punching the walls was my body's bizarre reaction?

By January, I had to wake up at 6 am every day just to be able to get myself mentally and physically ready to get out of bed. It became my normal routine to wake up in so much pain that it hurt to move at all. I had a system- if I waited long enough for my body to get accustomed, I could strategically roll out of bed and army crawl across my room to avoid any pressure on my feet and lower joints. People would think I was crazy doing what I needed to do to get moving for my day, but all of my pain was spreading through my body so slowly. Every time I thought I had one part of my body under my control (no matter how loosely I use that term), it would move to the next. I went down a black hole of internet searches to try to self-diagnose myself, but the morbid results just frightened me more. I decided if I just downplayed how I was feeling, eventually I would get better. One day I was sitting in class, and I leaned down to take notes. I absolutely panicked when my neck locked and I couldn't get back up. I always had a high pain tolerance, but my situation was reaching a totally different level.

I went to doctor after doctor; all of which had very different theories on my pain. One told me that I had fractures in my feet that were hindering my walk. A podiatrist told me I needed expensive corrective footwear. Another doctor told me that I was hurting myself in my sleep, and I should go to a sleep clinic so that they could monitor me. My roommates, friends, professors, and even random people would notice me limping. They would repeatedly ask me to go to the doctor. The problem was that I actually did go to the doctor, but no one was figuring out what was wrong with me.  Finally, in March of 2011, my last joint, my hips, gave out. As I was on the floor unable to get up, my mom insisted this was it, she was taking me to the doctor in the morning to get tested for anything and everything.

We did that, and less than a week later I got my diagnosis while I was in Florida visiting my grandparents. My grandmother, who has battled MS for decades, and my grandfather began to cry when I told them. My initial reaction was confusion; wasn’t arthritis just something that elderly people got in their hands and knees? My life changed instantly when I was handed a bag of pills to take. Since my numbers were through the roof, no one could believe I was even functioning and going to school. It wasn’t easy traveling for a month with the UConn basketball teams. Sitting on buses was so uncomfortable. I could barely keep up walking around the cities, standing during the games killed my feet, and trying to remember which pills to take was a lot to handle. But it was all worth it when we brought home a championship trophy!

After graduation, it was time to focus on my health. However, finding a doctor with the right treatment for me took over a year. I was absolutely miserable taking pill after pill that seemed to do nothing but make me anxious and depressed. I would get angry every time I went to the doctor because they would all just add another pill to my list rather than truly assess how much I was hurting. One doctor even told my mother and me that my arthritis was the worst case he ever saw- pretty uplifting right? I definitely was really looking ahead to my bright future!

The physical pain of this disease can be absolutely terrible; I became so numb to the pain that when a nail went through my foot, I didn’t feel it until I turned around and saw the trail of blood. However, the physical pain is nothing compared to the emotional pain. I was a 21 year old senior at UConn when I was gaining so much weight due to the inflammation and the medicines. I was so frustrated and embarrassed that I wasn’t able to exercise because the pain was too much. I couldn’t do simple things like wear my normal shoes. Instead I could only wear sneakers or Ugg boots because my feet were too swollen to fit in my other shoes. When my friends would talk about the great faraway places they were moving to after graduation, I would only cringe at the thought of having to be in a new place and not being able to walk without pain. Times when I was supposed to be happy, like on my birthday for example, I found myself just sobbing that I didn’t want to do anything to celebrate because everything in my body hurt. I tried my best to keep my sobbing episodes private because I was becoming such a good actress - pretending that I was ok when I wasn’t.

Seven doctors later, I found a rheumatologist that I still say saved my life. He quickly switched me to a biologic drug that has worked miracles. I now do injections every week, and I can do everything that I could before the disease wreaked havoc. I still have bad days and stretches that normally occur from stress, lack of sleep, bad eating, or the weather, but my pain now is nothing compared to what it was before. I am so grateful that these medicines exist, because I know where I would be without it- still on the floor unable to get up. 

I consider my time with arthritis a journey, because on this difficult road I have changed much for the better. I barely thought about my health because I was the kid who never got sick. Now, every day I am making a conscious effort to eat right, exercise, get enough sleep- all things that all of us should be doing. I do feel fatigued every day, but I am so thankful that my health has never plummeted to the point of where I started with my illness. I used to think that my arthritis defined me, because that was all I could think about and that was all anyone would ask me about. I've had to cancel or alter plans due to how I was feeling, make emergency doctor visits when my flares got out of control, and even had to ask my boyfriend of two weeks to inject my medication for me because I couldn't. My mental and physical health continues to be tested on a daily basis. I've lost count of how many times I've cried out that I don't want to be sick anymore. But, at least for today I can say that arthritis is just something I am living with, not something that is completely controlling me.

My hope is that we can work together to help each other "get in tune with autoimmune" so that no one will have to feel so defeated like I once did. We can help each other learn about ways to live a healthier life with a chronic illness. I by no means am an expert on pain management or diseases, but I am becoming an expert on being grateful for health.

Love, Meghan