My Body Attacks Itself: My Experience with an Autoimmune Disorder

When I dreamed of going to university, I hoped to develop friendships, get good grades, and make memories. What I didn’t dream of, or ever expect to develop, is Undifferentiated Connective Tissue Disease (UCTD), an unspecified autoimmune disorder. I'm afraid this is not an article where I am going to tell you how it can be managed successfully, both because I am not a doctor and unfortunately, I don’t know the answer myself.

It all started last October. I knew something was very wrong: my joints and face started swelling, my hair was falling out, I was covered in hives, and I was in so much pain that it hurt to even wear clothes. I was also not able to keep down any food, medicine, or water. Once the pain was beyond manageable, I went to the Emergency Room. Fortunately - considering what happened next - I was admitted right away. Within ten minutes of being on my hospital bed, I went into anaphylactic shock, which is a life threatening reaction in which the body attacks itself and starts to shut down. My body did this twice more within forty hours. The scariest thing was I didn’t know what was wrong with me, and whether it would kill me.

When this reaction was happening, the doctors were not sure what was causing it; however, they did rule out allergies. I had to undergo many blood tests, an ultrasound, an x-ray of my throat, and a biopsy to rule out cancers and other very serious diseases. I was transferred from the Emergency Room to a Short Stay unit where the doctors diagnosed me with UCTD. After a week, I was released from the hospital. Unfortunately, my journey with having an autoimmune disorder did not end there.

I have learnt to detect the symptoms that my body is acting up, before the stage of anaphylaxis: face swelling, hives, and loss of hair (picture of me in the early stages of a reaction below with only a swollen face). Fortunately, this means that I am able to take an emergency drug before I reach the stage of anaphylaxis. I have also learnt to realize that a trigger for my reaction is stress, which is hard to avoid as a college student who wants to excel.

Socially, having UCTD is difficult. I do not want to go out if my face is swollen, and this reaction seems to happen around once a week. I’ve cancelled Tinder dates out of the insecurity that I will be judged for looking different due to a swollen eye, even though it is not my fault.

Academically, there were challenges after my first UCTD attack: I missed a week of academics and had to take a midterm two days after being released from the hospital. The medication I take for reactions also causes extreme drowsiness, so at present, if I want to stop and attack, I have to forfeit the ability to stay focused.

But what I do have is support. I have amazing friends, family, and professors who have been wonderful throughout this mess. I am not sure what I am doing or how to manage my UCTD better, but I am grateful for those who have been there for me.

 

Images are author's own.