The Mighty Logo

How a Chronic Illness Diagnosis Can Shape a Life

The most helpful emails in health
Browse our free newsletters

As a child I was somewhat of a hypochondriac. I panicked over a cut or scratch, not because of the pain, but because of the fear that it would lead to an incurable infection that would ultimately kill me. Over time, I marveled at how many afflictions are survivable. Eventually, I trained myself to believe that the human body is well equipped to deal with the daily onslaught of germs and bacteria it encounters merely by living.

“The body knows how to heal itself,” my husband would often say, whenever I’ve questioned the need for medical intervention for a seasonal cold or virus. But that phrase took on new meaning about a year and a half ago when I received a diagnosis of chronic autoimmune disease.

As a reformed hypochondriac, I downplayed the early symptoms of dizziness and joint pain. My blurred vision and bloodshot eyes were simply due to too much time at the computer. The same culprit led to increasing stiffness and pain in my fingers and elbows. My job was stressful, and I was going through a busy period. I would feel better when things slowed down. After all, “the body knows how to heal itself.”

But that didn’t happen. I started feeling much worse. I saw my primary care physician who abruptly dismissed me as a hypochondriac (ouch!). He said I had complained just a few months ago about the same thing and he couldn’t find anything wrong with me. He tried to convince me to buy some more of the vitamins he was peddling, and right after that, I had the good sense to fire him.

I searched for and found a doctor who took me seriously and made the appropriate referrals. Within the time I waited for the results of a battery of tests, I feared the worst. Multiple sclerosis (MS) and amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease) comprised my darkest fears. Rheumatoid arthritis (RA) was up there, and high on my list of probable afflictions. Not knowing what the tests would find was scary, and I continued to deteriorate. Ultimately, all of this led me to a diagnosis of Sjogren’s syndrome.

I had never heard of this weird condition with an odd spelling, named for the physician who first described its symptoms. I was relieved to know that there really was something wrong with me. I was not a hypochondriac, and I felt vindicated. But soon the euphoria of finally being taken seriously wore off, and I realized that this condition was not going to go away. Indeed, my body would not heal itself. Ironically, its own intense healing power would, at times, leave me on the verge of lifelong disability.

When I finally began a treatment plan, I felt optimistic. There is no cure for Sjogren’s, and it has a wide range of manifestations. It attacks the moisture-producing glands, so it causes dry eyes and mouth. My chubby cheeks, brought on by inflamed salivary glands, are no longer assumed to be the result of weight gain. Sjogren’s attacks the joints and connective tissues, causing the stiffness and excruciating pain I had experienced for months. Dizziness and nausea are commonplace. Neuropathy, which causes numbness, muscle weakness, tingling, itching and migraines, can stand alone as a condition, but exist as part of Sjogren’s. The disease’s involvement with internal organs can affect the kidneys, lungs, heart, liver or intestines.

Treatment for Sjogren’s is geared toward slowing the progression of the disease and alleviating the symptoms, but there is no cure. Sjogren’s is a lifelong condition. But the good news is that it won’t shorten my lifespan — not unless I develop complications of lymphoma, which I am at a 45% higher risk for acquiring. Also, RA and lupus have a high rate of comorbidity with Sjogren’s. There are lots of overlapping symptoms. And my years of gastrointestinal distress with nausea and a severe intolerance for gluten has morphed into other types of food intolerance.

I take three medications regularly to control the symptoms and others as needed. It took about nine months for me to begin feeling the effects of the drugs as they permeated my system. I knew it would take a long time to experience some relief, and these medications do not prevent regular exacerbations of symptoms. Still, they do make me much more comfortable.

But getting to this point was not easy. Along the way, I suffered debilitating pain and exhaustion as I plowed through my full-time job. I never let anyone know the extent of my suffering for fear of being stigmatized. Unfortunately, I could no longer hide the outward manifestation of my illness when walking became too difficult for the weakening muscles in my legs, and I needed to rely on a cane.

My greatest fears came to fruition as coworkers started to distance themselves from me, even though I was and continued to be the top performer in my department. I had heard about such stories, but I honestly thought the team that I had served so faithfully and loyally during the past several years would rally around me in solidarity, and they would appreciate that nothing about my performance had changed, despite my newly acquired cane.

How wrong I was. Within two months of this change to my appearance, and just a couple of days before Thanksgiving, I was abruptly fired without cause. There is no doubt in my mind that my image-conscious company did not like having a person using a cane in a public-facing position.

Fast forward six months to today. My medication has finally started to kick in, and many of my symptoms are greatly improved. I still get unpleasant flares of active disease, but I know more about what triggers them. Having a chronic illness and even getting fired for it has made me more determined than ever to achieve my goals. I truly wish that things didn’t happen the way they did. It makes me sad and reminds me that society still has a long way to go when it comes to tolerating each other’s differences.

Losing my job was a considerable jolt. It was difficult to recover from this blow. But I didn’t want to wallow in self-pity and blame. After allowing myself to accept my new circumstances, I slowly started working on starting my own business as a freelance writer and consultant. I now choose who I want to work with, and I work hard for my clients. My biggest challenge is that my boss, me, has very high standards, but she is extremely tolerant of my needs and works with me to achieve my best. Honestly, this work is something I have always wanted to do. It is something I have decided to do despite my illness and not because of it.

Getty image by monkeybusinessimages

Originally published: April 13, 2020
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home