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TSPR Commentaries

Commentary: My Life with Lupus

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Camryn Lynn

For the past three years, I have written a commentary every fall about a fundraising event that I help organize for Samaritan Well, Macomb's homeless shelter. I take great joy in the work that I do for this event, and I consider the contributions I have made to it as one of the greatest accomplishments of my adult life. However, today I will not be speaking about the fundraiser. Instead, I am going to talk about the reason why we aren't having the fundraiser this fall.

Over the past few months, I have been in a constant struggle with lupus - an autoimmune disease that can devastate the body in nearly every way imaginable. I was diagnosed with lupus several years ago, but I had been fortunate to only have mild symptoms up until this summer, when all hell broke loose. The past few months have forced me to completely change the way I had been living my life. Attempting to reconcile that change with my perception of my own self-worth has been the greatest challenge that I have ever faced.

For as long as I can remember, I have been the pinnacle of an overachiever. Prior to this lupus flare, I was a full-time college student with a 4.0 GPA and a full-ride scholarship in an extremely difficult major, while also working two jobs and volunteering with organizations such as Samaritan Well and Western EMS. I kept a very busy schedule, and I thrived under the pressure of it all. I placed a huge amount of my self-worth in my ability to fulfill those obligations, and I would have sacrificed anything, including my own health, to maintain that balancing act. When this flare started, all of that changed. I became too sick and lethargic to keep up with even the most basic of my obligations. I started cancelling shifts at work and backing out of volunteer commitments. I withdrew from some classes, switched others to online, and had to arrange accommodations with the university’s disability resource center. Eventually, I asked my jobs to stop scheduling me indefinitely, and I reluctantly postponed the fundraiser.

The physical pain caused by my lupus pales in comparison to the mental and emotional strife of losing these aspects of myself. I used to look at support groups for lupus and marvel at how miserable some of the people seemed, the majority of whom are women. I wondered how they could let this disease consume their hopes and dreams, leaving them unemployed, alone, and flat-out bitter. I both pitied those people and thought I was above them. Now, even on my best days, I pity myself. I want to live my life to the fullest extent, experiencing the world and fixing all of the wrongs that I see in it, but I simply cannot.

I would like to say that I have reached some mental resolution to this problem, but truthfully, I haven’t. When you’re a kid, everyone tells you that you can be whatever you want to be as long as you set your mind to it. The realization that this may be true for some, but not for all, is a bitter one. Every day, I struggle to strike the balance between the person I want to be and the person I am forced into being. I still have to learn when to say yes to the things that make me happy and when to turn them down and rest, with hopes that resting will permit me to feel a little bit more like myself tomorrow. I don’t know if I will ever stop feeling disappointed in myself when I can’t follow through on my commitments and my goals, but I still have to try.

This has been extremely hard to say, but I felt compelled to share it as a sort of apology to all of the people who are experiencing similar struggles and are not being heard. I finally understand what the women on those internet forums mean when they say they feel like failures as spouses, mothers, coworkers, and friends. I finally understand that it isn’t their fault. This is also a personal apology to the people who I have had to cancel on and to everyone who I’ve let down while I haven’t been myself. I am eternally grateful for my family and friends, my professors and classmates, my coworkers, and the staff at Samaritan Well, all of whom have tried to be as understanding and kind to me as they possibly can. Now, if I can just figure out how to be half as kind to myself as they are to me, I think I’ll be alright.

Camryn Lynn is a junior at Western Illinois University, where she is majoring in Biology.

The opinions expressed are not necessarily those of WIU or Tri States Public Radio.

Diverse viewpoints are welcomed and encouraged.