By Michaela Metts
For the rest of my life. Forever. The realization of the permanence of my disease brought forth the tears I had worked hard to suppress. I fell apart right there in the pharmacy line. Even with dozens of potential witnesses, no one looked at me. The chaotic sounds of the surrounding pharmacy began to retreat from my ears as they became distant and muffled. The people around me, proffering no consolation, quickly faded into my unsympathetic surroundings. I was alone in this.
Less than an hour before, I had been informed, at the age of 22, I had an incurable, difficult-to-treat autoimmune disease called ulcerative colitis. My traitorous immune system had marked my colon for destruction and was succeeding in its purge.
My physician instructed me that if I took my medications on a strict schedule, I would prolong the loss of my colon and alleviate my symptoms. He had made it seem easy, but nothing about this disease had been easy. The path to diagnosis had been 10 grueling weeks of questions with no answers. Theories ranged from viral infections to parasites, but the lab tests never concurred. With horror, I found myself undeniably, yet inexplicably, deteriorating.
I felt betrayed. My diagnosis had come during my first semester of pharmacy school. While trying to don the role of a pharmacist, I was cast as the distraught patient.
Class remained a priority
In the days leading up to my diagnosis, I was so weak that climbing the stairs in my house became my Everest. Lifting my legs put pressure in my abdomen, which led to the sensation of boiling water scalding my organs. A deficit in nutrition sent my muscles into agonizing spasms. My freedom was restricted to a short distance from the nearest bathroom. Dehydration had left me with sunken eyes and skin like a mummy.
As these debilitating symptoms and the unpredictable nature of my condition progressed over the weeks, I began to leave my home less and less. I did not attend school social events or go out with friends. I was imprisoned. I saved all of my energy and morale for attending class.
I made sure to sit as close to the exit as possible for quick escapes, which were often needed. Because eating always triggered sudden, extreme symptoms, every day I would wait until the evening after all my classes were over to have my first bite of food. Each day was a challenge, but I powered through and kept up with my classes because I loved what I was learning. I loved where I was. After years of working hard for the chance to attend pharmacy school, I was finally there. I was closer than ever to becoming a pharmacist and I was not about to give up.
Role reversal
At last, after all that time, the cause of my misery was given a name: ulcerative colitis. However, finding answers only brought a modicum of relief. The dreadful unknown had been replaced with a new reality—my body was betraying me. I would forever need medicine to save my life.
My mind came back to the present as the pharmacist greeted me with a broad smile. I could not muster the strength to emulate her friendliness. My eyes were burning, and my face felt sunburned from crying. As the pharmacist instructed what to expect from my new array of prescriptions, terror consumed me. Here I was in pharmacy school wanting to learn about how to help others manage their chronic medications, but I was terrified of managing my own. Looking back now, I realize this was because I was grieving the loss of my health. I had always been healthy and did my best to take care of myself. Accepting these medications meant accepting my diagnosis and, even worse, being sick for the rest of my life.
I wanted to tell this pharmacist about my grief and my apprehension of being reliant on tablets to have some semblance of a quality of life. All I could think about was how worthless my body was as it destroyed itself, and I felt like a failure for needing medication. I felt inadequate, because I was now dependent on something to live that others did not need. The pharmacist seemed very busy, and I saw myself as insignificant, as one patient out of the dozens in line; so, I convinced myself to not speak up and to just get out of the way.
Regaining my freedom
The stress from my trepidations about my medications greatly impacted my mental health for the months to come. Although I began to regain some of my physical health, nothing had changed emotionally. Every pill, every drug, and every refill reminded me that I was a sick person first, before anything else. This was at the forefront of every thought of every moment of every day. I would have stopped taking my medication if not for the guaranteed punishment of physical suffering from a relapse. Fortunately, my attitude soon changed.
Now I am in my third year of pharmacy school and I work as an intern in a community pharmacy. My anxiety about my disease and my medications has been alleviated by time and experience. I learned more about ulcerative colitis and found support from other patients’ stories and advice online. Frequently taking medication and keeping track of refills quickly became routine.
As my symptoms improved, I began to regain my freedom. I felt comfortable going out and began to get more involved in student organizations. Instead of feeling like a failure because of my medicine, I felt grateful for the health it brought me.
A change in how I counsel
From the perspective of a healthy pharmacy intern, I had never truly considered the permanence of some health conditions and the emotional turmoil that can accompany such a diagnosis. As a result of my initial struggle with chronic illness and treatment, I always make sure to ask the patient I counsel how they feel about taking their medication. Many patients have gone on to tell me of serious concerns that have made them feel depressed, forget doses, or stop taking their medications altogether.
Several patients have told me they feel a sense of failure, as I did. Needing a medication made them think they did something wrong or could not take care of themselves. For example, I recently counseled a patient who had discontinued his statin despite not having adverse effects. When I asked him how he felt about taking the statin, he told me that changing his diet had not been enough. He saw needing a statin as an indicator of failure.
Now that this channel of communication had been opened, I was able to directly address his trepidations. We discussed the genetic components of high cholesterol, which no one can change. We examined the benefits of reduced likelihood of a heart attack while on a statin, which, in turn, increased the chance of a long and healthy life with his family. He realized that taking this medication did not mean he had failed; instead, deciding to take it to improve his health meant he was taking control of the situation.
From the perspective of both a lifelong patient and a student pharmacist, I have learned that it is not enough to inquire about the physiological effects of taking a medication; the emotional aspects are important, as well. A patient may be experiencing an ideal therapeutic response with minimal physical adverse effects but experiencing emotional adverse effects. These can be the fear of a stigma associated with the medication, feelings of inadequacy from their diagnosis, or distrust of the medication, itself, because it is a
man-made molecule.
I have found in practice that patients are almost always hesitant to admit these emotional complications. Most will not speak up without prompting. I know from experience that opening the channel of communication can be difficult. Fears and emotional problems are personal and can be challenging to convey. In addition, patients have told me they did not speak up because of fear of beratement for doubting the therapy or because they assumed their problem was not something the pharmacist would like to know.
A simple question during counseling about the patient’s feelings can break the barrier and facilitate open discussion, which can empower the patient to speak up. As pharmacists and future pharmacists, it is time to start the conversation.