What It's Like to Be Bedbound For 4 Years

I was officially diagnosed with multiple sclerosis (MS) in 2021, but I had symptoms of the condition for nearly two decades before that.

I remember being 17 and having what's known as optic neuritis — pain and temporary vision loss that's common with MS, a chronic condition that affects the central nervous system — but because of my age, the optometrist brushed my symptoms off.

That was far from an isolated incident. I had a wide range of symptoms that, looking back, were obviously all related to MS, which occurs when the immune system attacks myelin, the protective cover on your nerve fibers, leading to communication problems between your brain and body. Before my real diagnosis, I suffered for years with vision loss, chronic fatigue, paralysis off and on, weakness, random pain attacks, chest pain, fainting, migraines, intestinal paralysis, tremors, and numbness that spread from my feet to my knees. But because each one came at different times, they were all treated as isolated events.

My symptoms were often chalked up to anxiety, and I was treated dismissively. Frankly, every symptom and concern I had from 2002 until I was diagnosed with MS was grossly mishandled and misdiagnosed.

After years of misdiagnoses and frustration, I was able to make an appointment at the Mayo Clinic. There, doctors sat with me for two hours and really listened to my timeline of illness. They suspected MS immediately and sent me for testing that same week.

Before then, MS had never been a thought in my mind. So my reaction to my diagnosis was a mix of relief and confusion. I felt relieved that my struggles weren't psychological, but due to an actual medical condition. But I was also confused and frustrated because I had been gaslit by several doctors over the years. The doctors at the Mayo Clinic even told me that "anxiety" was on a lot of my medical reports.

I have tried several disease-modifying therapies (DMTs) but have recently been diagnosed with non-active secondary progressive multiple sclerosis. Unfortunately, there is no current treatment for this type of MS. Although it is non-active — meaning, no new lesions are forming — the disease continues to progress, and my ability to do things gradually and steadily changes.

Symptoms of non-active secondary progressive MS include trouble walking, fatigue, cognitive and memory issues, muscle stiffness, and vision problems. Overstimulation can cause severe reactions like seizures and memory loss. My condition slowly progressed, and I've now been mostly bedbound for around four years.

Being bedbound means that most days I can manage about 25 steps with assistance, allowing me to get to the bathroom a few times a day. My family handles cooking, cleaning, and bringing me things. On a good day, I might be out of bed for up to two hours, broken up throughout the day.

There are days when I'm completely bedridden, though. On those days, I'm not able to get out of bed at all. I have to use diapers, and I rely on my husband for almost everything.

It can take me a few hours to fully wake up and become functional. I spend part of my day answering emails and helping others on my TikTok platform, which I use to advocate on behalf of those with MS and share advice about what I've learned over the course of my journey.

I have to be careful to manage my energy, since it's a limited resource. On some days, I sleep until my family returns from work and school. When I am able to, I create informational videos and perform light exercises from bed to maintain some physical activity. Occasionally, I talk to friends on the phone, but often, I just sit quietly. Even watching TV is difficult for me. I can't focus and get overstimulated; it can also trigger seizures.

Many MS patients, including myself, can't do normal activities or make plans because of unpredictable symptoms and flares. The threat of overstimulation can make social interactions hard. Decision fatigue and cognitive issues also interfere with my ability to maintain social connections.

The emotional toll of watching my family live active lives while I am confined to bed is intense, and it's hard for people to understand and accommodate my limitations.

Despite the challenges, MS has helped me discover my purpose. I earned a life coaching certification last year and am now pursuing a happiness coaching certification. I want to continue my education to achieve master certifications in both fields, along with a psychology certification.

I've found a way to coach and support others from my bed, which gives me a sense of accomplishment and purpose. I've created an online group for support and occasionally take on clients when I am well enough. I also enjoy coaching teenagers and doing corporate coaching.

The reality of MS is complex. Despite treatments, the disease can continue to progress, as is my case with non-active secondary progressive MS. My family and I once thought that we could "tackle the problem" with a known diagnosis, which gave us a false sense of control. That quickly diminished as we realized the limitations of currently available treatments.

But I have hope. I hope that there will be advancements in treatment for all forms of MS, especially the invisible progression side. I realize, though, this may not happen in my lifetime. More importantly, I hope that doctors, especially neurologists, will learn from patients' experiences. The medical community needs to recognize symptoms more accurately and treat patients with greater empathy and understanding.

Korin Miller is a writer specializing in general wellness, health, and lifestyle trends. Her work has appeared in Women's Health, Self, Health, Forbes, and more.