Living with Lupus as a Student

I’m a registered disability student. Just over a year ago, I was diagnosed with systemic lupus erythematosus (better known as lupus). An autoimmune disease, one of the effects that has been most difficult for me to manage, as a student, is my mental stamina. I do not have the ability to sit and study for hours at a time. After about 2 hours my brain has become overworked, and I must step away and relax.

There are at least 80 autoimmune diseases, some of which you’ve heard of (such as rheumatoid arthritis, type 1 diabetes, multiple sclerosis, celiac disease, psoriasis, and Chron’s disease). Very simply, an autoimmune disease is the result of your immune system going haywire and not reacting in the manner it is supposed to? protecting the body from foreign invaders. Instead, the immune system has turned on itself and is attacking and damaging tissues using antibodies that are usually reserved for fighting infections. Each autoimmune disorder is quite varied but there are also many commonalities across them. Most cause extreme fatigue and mimic the feeling of having a flu and fever (with or without the standard gastro unpleasantries). You know that feeling of being exhausted while You’re ill? Your entire body has been wiped of energy from fighting the infection. Those of us with autoimmune diseases regularly feel like that, except instead of recovering from an illness, simple daily activities can trigger it, such as a shower or making dinner. The body is constantly fighting itself, using its energy stores to fight the “invader”, which, of course, is you.

I can’t speak for every autoimmune disease but I can speak to my manifestation of lupus (it differs from person to person). Lupus has the potential to attack nearly any part of the body (hence, the “systemic” part of the name). It can attack joints, nerves, kidneys, lungs, brain, skin, mouth, and hair. For me, it first presented (and later diagnosed) as an extreme and rapid form of rheumatoid arthritis. Formerly a very active person, I was barely able to make it from my couch to the bathroom or up and down the 6 steps to my house, while the summer prior, I had been hiking the California section of the PCT (1700 miles = ~20+miles/day). My daily regular activities used to include mountain biking and hiking in the summer, and downhill and backcountry skiing in the winter?not anymore.

Lupus then attacked my skin (with rashes), hair (which started falling out in clumps), kidneys (that got nephritis), and lungs (that started to fill with fluid). I also developed a blood clot (pulmonary embolism), and fatigue. Called a “flare”, my antibodies decided to wreak havoc on nearly every part of me. I was put on mega doses of immunosuppressants and steroids (thankfully, I narrowly avoided the chemotherapy treatment) with the goal to calm my immune system down and force it into “remission”. Remission?a beautiful term for many of us “lupies”. Depending on where you look and how your body reacts, remission can be an expected outcome, with the possibility of never experiencing a flare again. On the other end of the spectrum, many people never get away from their symptoms. The reality is that most of us end up in the middle, learning what “triggers” will set them off and learning how to manage those flares as they start. Whatever point of remission a person ends up at, It’s necessary to remember that there is no cure. I will have lupus for the rest of my life.

Although there is no definitive answer as to what causes a person to develop lupus?the mystery surrounding autoimmune diseases is vast?one documented trigger for a flare is stress. There is a lot of chatter within the autoimmune world about the need to listen to and respect your body. don’t ignore the little irritants and warning signs or symptoms because it can result in a flare, devastating your life. Most importantly, pay attention to your stress levels.

How, then, does one limit stress while enrolled in multiple courses and study to stay on schedule, also while maintaining work, home, and volunteer responsibilities? It’s not easy, and I’m still learning. Life is dynamic, constantly changing, and so my learning will need to remain fluid and adapt as those changes occur.

Alas! I will end this week’s article here (I’ve been sitting for far too long ? one my learnings) and delve into my further stress management techniques next week.

Tara Howse is in the BPA – Criminal Justice degree program with AU. With aspirations to continue her education, she is looking into AU’s Master of Arts – Integrated Studies degree.

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