Guest Post: Being a Chronic Illness Patient in the Medical Field

Sometimes I feel like a fraud. I stand on both sides: a patient and a medical professional. I am sick and need care while I try to heal others and give them support. It took me a while to figure out how I could fill both of these roles.

I began physical therapy school with dreams of helping sick and injured people regain one of the most basic facets of life: movement. I loved what I did and my ability to improve my patients’ quality of life so dramatically. At the end of my first year of school, I was taking part in my first clinical experience-my first time having real patients who were mine to treat (with supervision , of course!). As I was teaching them to move and walk and lift, I was becoming confined to the fetal position. I was experiencing weight loss, constant fevers, painful swallowing, fatigue, diarrhea, and stomach pain. It wasn’t long before I was diagnosed with Crohn’s disease. 

While I was quick to get the diagnosis, I did not receive immediate relief. I found myself all of the sudden in this job where I was supposed to be on my feet and moving around while being barely able to make it through the day. I remember calling my mom crying from my bus stop one day, unsure if I would be able to walk the four blocks to my clinic. Instead of spending my after-work hours reviewing class notes and researching new treatment methods, I was spending time at doctors’ offices and hospitals, getting procedures done and blood work completed. 

I was lucky to be declared in remission just four months after my diagnosis thanks to Remicade and an amazing doctor. By this time I was back to sitting through eight hours of class per day, getting infusions every 6 weeks, and rapidly gaining back the weight I had lost. I finally had the time and energy to process what had gone on that summer and to begin to understand what it meant to have a chronic illness as a young, professional student.

As my education continued, I felt more and more like a fake. I was supposed to be treating and helping these patients, but I was really one of them. I belonged in the hospital, but I felt my position was in the gown, not in the scrubs. I felt like such a liar telling patients that trying to walk down the hall wouldn’t be that exhausting (I knew it would be) or that I didn’t think they had chubby cheeks from being on steroids (they did, as I had). I just couldn’t figure out how to be both a patient and a doctor, and I began to doubt my ability to do my chosen job. After all, I was going to get sick again…isn’t that what “chronic” means? How would I be able to complete the physical requirements of my job when I was feeling so awful? How would I be able to convince my patients of the benefits of exercise when I couldn’t even rise from my chair?

I had an amazing clinical instructor who spelled it out for me one day. I wasn’t a fake. I had this amazing ability to connect with my patients in a way that most others could not, and that was only because of my illness experience. I realized that, no matter our diagnosis or injury, we all really do share some similarities. We know what it feels like to be laying in that hospital bed alone and scared. We know the fear that comes with both not having a diagnosis or having one and waiting to see if a new medication will work. We know how physically and emotionally painful having a chronic illness can be. We know that there are times when we just want to quit being sick, even though we can’t.

I began to share some of my experience with my patients. It made me become more “real” to them. I was no longer giving them advice that I learned in a book. I was relating to their experience. I could relate to my patients who experience chronic pain. I could understand the fear that my patient’s caregiver had as to what would come next after a new diagnosis. I could commiserate with my patient who was tired of getting her blood drawn. I understood. I was real.

I think we forget sometimes how much we have to give, that we can still help others even when we are falling apart. As I graduated and received my doctorate degree, I realized that while this really horrid disease had arrived during this pivotal portion of my life, that I wasn’t going to let it stop my from achieving my goal and from being the best PT that I could be. While I don’t necessarily believe that I got sick for a reason, I do believe that my experience has made me a better physical therapist, a more “real” physical therapist.

Now I just have to work on putting the medical professional part of me aside when it is my turn to be the patient. That part might take some more work…

Huge thanks to Alyssa for sharing her story! Can you relate to this at all? Have any feedback for this lovely lady? Want to write a guest post? Email me at marisa@journalingIBD.org 

  • http://www.veganostomy.ca/ VeganOstomy

    You’re not a fake at all!! I think that nurses and doctors who are patients themselves are able to offer something that “normal” people can’t: a connected sense of empathy that you can’t pick up in school. Good on you for working hard to help others! :)

  • pmscpa

    You really captured “it”. I don’t seem to be able to get through to family members how “it” feels. It’s difficult as they haven’t had to deal with anything like this and I hope they never will. Your patients are lucky to have such an understanding soul to help them through their difficulties. I’m glad you finished your degrees. You did so in spite of this disabling disease.