While some health issues are visible to the outside world, many people face chronic conditions that do not have externally visible signs or symptoms. These are often called invisible illnesses. In a series, individuals with invisible illnesses share their personal experiences. Their stories aim to shed light on these conditions and offer solidarity to others facing similar situations.
She was at the peak of her physical fitness in her 40s, an exercise fanatic, avid recreational ballroom dancer, hiker, rafter, and horse rider. Yet something was off with her body.
How she first knew something was wrong
She gradually developed a “sensitive” stomach. Spicy foods, red meat, dairy, wheat, nuts, certain raw vegetables, and anything containing preservatives, additives, or coloring began to cause severe bloat, pain, and bouts of diarrhea. Along with the change in her constitution, her periods became erratic, and her heart began to race.
After being diagnosed with hypothyroidism, she was given a daily pill and sent on her way. But the problems continued. She started to dramatically lose weight, which was concerning. Her stomach intolerance worsened, turning into nausea and loss of appetite. She reached a point where she could only eat a few bites of organic chicken, apples, blueberries, oats, and green leaf lettuce.
She sought only minimal traditional medical care. Never a big fan of Western medicine, she refused any medication other than the thyroid pill. She saw her physician for yearly exams and mammograms. Otherwise, if it wasn’t natural, she didn’t want it.
Then, one day in the shower, she noticed a chain of lymph nodes bulging out of the side of her neck, Frankenstein-style. By that time, she weighed just over 100 pounds, could no longer exercise (walking up a flight of stairs was too much exertion), and could barely keep her eyes open from fatigue.
In the following months, she was diagnosed with rare, incurable stage 4 Mantle Cell Lymphoma (MCL). This began a years-long trek to save her life.
Her journey with lymphoma
Blood cancers fall into three categories: leukemia, Hodgkin lymphoma, and non-Hodgkin lymphoma. MCL is a non-Hodgkin lymphoma. There are about 60 subtypes of non-Hodgkin lymphomas, and MCL patients make up only 5% of all NHL diagnoses. Among that 5%, three-quarters are men over 60. She was a 49-year-old female. The average life expectancy with MCL is five years. As one of her sons said, “Mom, you didn’t just draw the short straw. You drew the shortest straw.”
The first year she got treatment, she commuted 1,800 miles one way to MD Anderson Cancer Center in Houston, Texas. She was accepted into a clinical trial that had the potential to extend her life. The hope was 10 years, not five. Her local oncologist strongly encouraged her to take this path, saying, “You are too young. This is too rare. We can only give you the standard of care.” She had no idea what this meant, not speaking the language of cancer. The doctor explained that he knew only one person in her state with this diagnosis. Unfortunately, that person was an older man who would pass away before her next appointment.
The clinical trial accepted 160 patients. She was number 132.
After nearly a year of sometimes weekly back-and-forth trips to Houston, she entered inpatient chemotherapy. There, she would spend between five and six days in the hospital to receive each round of treatment. Following chemo, she had maintenance infusions for two years. After that, she told her doctor she was divorcing him and his team and that she would get back in touch when she was ready. She had reached her tolerance of doctors, hospitals, and treatment.
Living with her invisible illness
It has been six years since she started treatment, and three years since she walked away from scans and appointments. Her original prognosis was five years, 10 with the trial. She is on six years. As far as she knows, her cancer is currently dormant, a word many with an incurable disease prefer over “remission,” as remission is often heard as “cure.” She currently does not have any outward signs of the disease. But there is the rub: she will never be without her lymphoma, and she will never be herself again.
Her hair, eyebrows, and lashes have grown back, her skin no longer peels, and the boils on her face and head are gone. But what people don’t see is what haunts her daily.
She is fraught with exhaustion, fatigue so great that she naps almost daily. This is not the tiredness from staying up past bedtime. This is the slack-jaw, I-need-to-sleep-now type of feeling that surpasses everything else—work, play, family, and entertainment. Because of her fatigue, she has difficulty maintaining a normal work life. She needs a sofa in her office to rest on or access to the mother’s nursing room down the hall to lie down, or lately, the ability to work from home to sleep during her lunch hour. Her social life does not exist past 7 p.m.
She has chronic joint pain from the effects of the trial drug. There are times when she needs walking aids to assist her due to pain and inflammation. She has also experienced issues with balance, which she has since gone to rehab to work on.
The chemo brain, a fog that has lived with her for years now, is a constant companion that swirls through her thoughts like smoke, clouding her short-term memories and scrambling her words. This makes the simplest of tasks often overwhelming: grocery shopping, interacting with people, or retelling stories.
And then there is the trio of anxiety, PTSD, and survivor’s guilt that are attached to her like a shadow. Anxiety is the largest of the three. After all, the body that still houses her has betrayed her once. It will surely do it again. The realization that she suffers from PTSD did not manifest until she reached her terminable date of five years, and she learned that nearly every other person on the trial with her had either passed or relapsed. Why hasn’t she? When will she? Cue the anxiety. Now, she hyper-panics over everything, sure that each hangnail, bruise, or hiccup is the beast’s return.
The survivor’s guilt is perhaps the most complex and confusing. Most people don’t understand why she would experience guilt for still being alive and thriving. MCL is so harsh that it is one of only a few cancers on the list of compassion disabilities that allows for disability benefits. However, she still works a full-time job and never required disability, whereas so many other people in her position did. She has not relapsed, whereas nearly all have. She is still highly functioning, whereas so many have died. By all accounts, she is doing miraculously. But inside, she is a disaster.
How she is coping
It became evident early in her diagnosis that she needed to find a way to cope or she would drive herself mad in anticipation of relapse and death. She had to find the grace to forgive people who had no idea how to stand by her. She had to give a wide berth to those who look at her and forget she is still fighting, who forget she was or is still unwell, and who want to complain about seemingly trivial issues. Finding grace early on was paramount to her moving forward.
She then realized that a strong support system of like-minded persons (cancer thrivers, particularly those with her same diagnosis) was essential for her continued positive mental health. The doctors treat the cancer. She was then left to figure out how to pick up the pieces of a shattered life. No one understands her pain and racing thoughts of fear and anxiety better than another MCL patient.
Lastly, she needed to replace her thoughts from who she was to who she is becoming. She is, by all accounts, becoming a better version of herself. She has learned to lean into her down days and allow herself to gr…
