Nearly one million people in the US live with Multiple Sclerosis (MS) (“What”). MS is a chronic, autoimmune disorder in which the body’s immune system mistakenly attacks its own central nervous system. Immune cells damage nerve fibers and their fatty coating known as myelin sheathing, which leads to inflammation and scar tissue that interfere with electrical messages and nerve processing. Symptoms of MS include fatigue, weakness, tingling, vision problems, temperature sensitivity, an unsteady gait, and short-term memory and concentration problems. No single lab test can prove or disprove MS, and many MS symptoms are sporadic and common among other diseases (“About”). As such, diagnosis can be a long and difficult process.
Treatment of MS can also take a physical and mental toll on the body. Inflammation, nerve fiber damage, and loss of brain tissue all occur before symptoms appear. As such, by the time someone is diagnosed and receives proper treatment (if ever), the disease is already well underway. There is no cure for MS nor treatment to heal damage that has already occurred, however, disease modifying drugs exist that can reduce the frequency and severity of symptom relapses and delay the onset of disability. Unfortunately, these medications can bring about a range of negative side effects including flu like symptoms, chest pain, hair loss, body disfiguration, and a compromised liver and immune system (“What”).
I interviewed Mary Smith, someone who has MS, to try and capture what living with this disease is like. I sought to answer the question of how a chronic illness can affect a person’s physical and mental health, as well as overall life outlook. Ultimately, this narrative cannot fully convey Mary’s experience, but by sharing her story it is still possible to raise awareness and understanding.
Mary was born and raised in Long Island, New York as one of eight children. This naturally led her to be independent, quick-witted, and a tad mischievous. She grew up an active gymnast, and was always an optimistic go-getter. Her first MS symptoms appeared in high school, when she began to experience constant headaches. She thought this was normal, however, and ignored it. In addition to the headaches, Mary, a once energetic girl, started struggling to make it through the day due to exhaustion. She recounted coming home from school every day and collapsing on the couch, unable to fathom how her sisters had the energy to run around in the backyard. During her senior year, Mary became extremely ill with mononucleosis and was out of school for a month. She visited the doctor for the first time then and had many tests done, but none provided any explanations. Ultimately, the physician prescribed a handful of vitamins to take, thinking the illness would pass.
Mary’s symptoms, however, did not pass. Her extreme, continual exhaustion remained prevalent through college at SUNY Oneonta and graduate school at the University of South Carolina, where she studied psychology. She was asked to join a workout session after class one day, and recalls vividly that “while old ladies were jumping around, I was exhausted, lying on the ground.” The experience was humiliating. Understandably, Mary experienced an onset of depression due to frequently being in pain from migraines and being too tired to participate in everyday activities. As a psychologist in training, Mary recognized that she needed medication, but her psychiatrist wouldn’t prescribe her any. This is because back in the 80s, mental health mental health was not widely appreciated. “Unless you checked off the box off that you were going jump off a bridge or kill someone else, no depression meds for you,” Mary recounted bluntly.
After receiving her PhD in psychology, Mary worked in the NY, SC, and NC public school systems for twenty years as a school psychologist. During this time, more MS symptoms came to the surface. She began to slap her feet on the ground when she walked, due to improper nerve firings in her legs and feet. One day, when she was walking down the stairs, she heard a crack as she put her foot down. When she went to see an orthopedist, the doctor brushed her off, attributing the ankle break to simply being a busy, working mom with three kids. Not two years later, however, the same thing happened again. At this point, Mary thought just being “clumsy” was a far-fetched explanation. Something was wrong, but it was still unknown. “I break both legs and you’re just calling me clumsy? That’s kind of crazy,” she said dryly. Mary’s foot shuffling progressed into foot drop, a condition when your mind tells your body to pick your foot up, but it does not. Foot drop caused Mary to fall over randomly, and she became nervous to walk around the neighborhood or grocery store for fear of collapsing.
To add to the discouragement, frustration, and almost paranoia caused by her foot drop, Mary also experienced “brain fog.” Brain fog, also known as cognitive fog, is when you experience a slowness of brain processing due to scarring of brain tissue. In instances of brain fog, Mary took a very long time to make simple decisions and didn’t think logically. “It’s like my head was in molasses,” she said. Brain fog is comparable to constantly having something on the tip of your tongue, but struggling to reach it. As such, it can be extremely frustrating. Furthermore, Mary couldn’t tell when brain fog was there or not, so she was constantly worried that her sense of thinking was flawed.
In her late 30s, Mary felt a piercing pain around her chest while driving. Unknown at the time, she was experiencing an “MS hug,” when the nerves around her heart were seizing, giving the feeling of having a heart attack. Mistaking this MS symptom as a heart problem, she went to the cardiologist. Her heart catheterization said nothing, though, and the heart doctor stated it was all in her head. Obviously, Mary wasn’t imagining things, but she began to question herself and became extremely disheartened that she couldn’t find an explanation for her problems. In addition, she felt insulted and belittled that doctors weren’t taking her problem seriously. She visited a general practitioner multiple times, who suggested it could be a spine problem and that she should “just carry her laptop back around her other shoulder”. Once again, Mary felt misunderstood and uncared for.
Time passed and symptoms continued. On multiple occasions, Mary recalls not being able to move her legs at all. When playing basketball with her son, she tried to wave her arms around as much as possible to act normal and draw attention away from the fact she couldn’t walk. Exhausted, pent up, and still without answers, when she had her regular checkup with the OBGYN, Mary nearly cried out “I think I’m dying.” The OBGYN doctor did blood work, which showed she had no iron in her blood. She was sent to the hematologist, who gave her iron transfusions for a few years. These transfusions helped some, but they didn’t remediate many symptoms. At her breaking point, Mary documented every single symptom she ever had and thrusted the paper into the hematologist’s hands at her next visit, who referred her to a neurologist.
At first, the neurologist thought Mary had suffered a stroke and called in an MRI. When the results came back, however, he was astounded to find numerous lesions of scar tissue in her brain and spine. He urgently called Mary back into the office, where she was finally diagnosed with MS at the age of 47. The nurse told Mary that “she can cry now,” but she recounts feeling more relieved than sad at first. She finally had an explanation to the 30 years of symptoms; it wasn’t all just “in her head.” Mary knew nothing of MS when diagnosed, but her sister and husband, who were with her at the appointment and who were knowledgeable of the disease, were shaken. Since the lesions were identified just then, the doctors could not determine how long they had existed and as such whether Mary had a fast or slow acting form of MS. In the meantime, they told her she “better enjoy the rest of her life.” Mary worked one more year in the school system to qualify for disability insurance, and then retired.
Now that her disease was identified, Mary could seek treatment. Treatment for MS is unique in that the patient’s themselves pick the drugs. A spectrum of MS drugs exists, with varying levels of efficaciousness and side effects. More effective medications come at the cost of worse side effects, such as chemotherapy-like symptoms. Since doctors don’t want to subject patients to unwanted side effects, they let them choose the drug with the desired “risk to reward” from a “stack of binders” they are sent home with.
Thanks to family networking, Mary began seeing a great local neurologist, doctor Graham. Doctor Graham was a big proponent of using the lower dosage, most researched drugs with the least side effects. Mary thought the same way, and followed his guidance for many years. Every day, and later three times a week, she would inject herself with the drug Copaxone, which simulates myelin to block immune cells that would otherwise damage the actual nervous system (“What”). These injections all over the body helped reduce inflammation and thus MS symptoms. In addition to MS medications, doctor Graham also prescribed Mary her overdue depression medications, since he acknowledged and understood the connection between MS and mental health. When doctor Graham eventually retired, Mary recalled being “pissed off” because she loved him so much and felt like she was being abandoned.
Mary experimented with many doctors after doctor Graham, all of which strongly pushed higher dosage drugs. Unsure but pressured, Mary agreed. When one medication caused her hair to start falling out, though, Mary called it quits and reverted to her original, low dose medication, much to the dismay of her doctors. In her eyes, the severe side effects weren’t worth the chances to further slow the progress of MS. Although she was supposed to inject the drug in various areas around the body, she grew tired of the frequent, painful shots and began injecting them into only her belly, where they hurt the least. Too many vaccinations in one area cause fat to harden, and thus lead to lumps in her stomach, but she didn’t care by that point.
After ten years of using Copaxone, Mary did not develop any new lesions, and decided to stop the MS medication at the age of 60. Although this came with the risk of the disease resuming its course, Mary was tired of dealing with the side effects and administration. Today, she gets annual MRIs and simply hopes that no new scarring appears.
Mary’s diagnosis and treatment of MS were long and arduous processes. “Modern medicine is more an art than a science,” Mary said when looking back on the whole ordeal. “The physician really needs to be in tune with the patient, the drugs, and the disease” to give a timely diagnosis and the best treatment. Unfortunately, it took a long time to find this type of physician for Mary. Many physicians prior to her diagnosis did not give her proper consideration. This not only damaged her physical health by delaying diagnosis and subsequent treatment, but also her mental health. Her depression stemmed from the hopelessness, confusion, and frustration of unexplained symptoms. The treatment options for MS also contributed to these feelings due to the never-ending hassle and pain they involved.
Mary’s mental health was also impacted from observing others with MS over the years. Her good friend Keenan developed a seizure disorder due to MS, an acquaintance lost heart function and died because of MS, and another friend suffered shutdown syndrome. Shutdown syndrome is a form of fast acting MS that disables a person’s movement and speaking ability, leaving them as essentially a brain in a shell of a body. Understandably, witnessing the negative outcomes of others with her disease is extremely frightening and dispiriting. However, the MS disease process is very unpredictable and varies from person to person, so Mary tries to stay as positive as she can and “keep things in perspective.” “People get hit by cars every day,” she said, “if you worry about this [MS], you dig a hole faster than ever.”
Today, Mary “goes with the flow” and lives her life to the fullest. She has learned to budget her limited energy with MS, which she uses to play with her two dogs and renovate her house… including repainting it twice. She has maintained her determined attitude and sense of humor, the latter of which clearly shone through in our interview. Her children have moved out of the house, and she lives happily with her loving husband. Although MS took a toll on Mary, she is still the person she always was.
“About Multiple Sclerosis.” Johns Hopkins Medicine. https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/multiple_sclerosis/conditions/.
Smith, Mary [pseudonym]. Teleconference interview with the author. 12 Nov. 2021.
“What is MS?” National Multiple Sclerosis Society, 2021, https://www.nationalmssociety.org/What-is-MS.
Featured Image Source
Multiple Sclerosis Overview. 28 March 2020. Stem Cells Transplant Institute. https://stemcellstransplantinstitute.com/2020/03/28/multiple-sclerosis-overview/.