Living Alone with Multiple Sclerosis

I’ve been independent a long time, but living on my own with MS is next-level. Here’s how I’ve adapted.

I won’t sugarcoat things. I am discovering that feeling unlonely while being alone can take time and work. I have lived alone and single since 2010, and I have found that the most important thing I can do to meet the challenges of living independently with multiple sclerosis (MS) is constantly working to change my mindset.

I hang tight to my independence, but I have learned to ask for help when needed, as MS doesn’t always make that optional. Seeking a better quality of life in every decision is nonnegotiable.

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A trifecta of terrible

I was officially diagnosed with MS in early 2021 at the age of 57, which falls outside the typical ages of 20 to 50. However, I was sick years before my diagnosis, resulting in my life’s most significant health crash in 2020. Yes, the year of COVID. Which led to a COVID job loss. A job loss, the pandemic, and a severe yet undiagnosed illness felt like the trifecta of terrible. I was confused and afraid. I was struggling financially and physically. It was also the first time I had really felt alone in the single life I had chosen for myself.

So, when I got the call from my doctor with the words, “It’s multiple sclerosis, Allison,” I sat at my desk, put my hand over my mouth, and silently cried. Alone. Cue the unfamiliar feeling of loneliness.

A threat to my independence

Like many of us, I had been desperately seeking an answer to explain my declining health for so long that the diagnosis was both a relief and a blow. I finally knew decisively what I was dealing with, which was welcome, so I could focus on finding the proper care for myself. That was empowering.

However, I also was terrified, rattled, and heartbroken. This was not the plan for my life. The independence I had come to love felt threatened. Questions raced through my mind:

• How was I going to support myself in the immediate future?
• How would I drive with the unpredictable pain I live with daily?
• How would I stay safe in my own home?
• What doctors did I need to add to my care team, and how would I remember everything they told me?
• How do I continue to enjoy life and derive meaning from it?

I let myself have my pity party. I wept and screamed.

Then, I gave myself grace.

It was the only way to move forward. And I have repeatedly gone through that process, permitting myself to do that when I need to. I took a hard look at my life and where I needed to make changes to live with MS as a single person. I knew I didn’t want to be a middle-aged woman with MS but an incredible, unique, stylish, rock-star older woman who just happened to have MS.

Designing a new normal

It became clear that I was going to need to figure things out. So I read everything and questioned everything. I ordered books on MS, and Googled as if my life depended on it (because it did). I learned a lot, about practical concerns and bigger-picture things, like that mindset shift.

I came to understand that few things are predictable when living with MS. Every time I finally adjust to a new routine, my body gets the last laugh and challenges me to do it differently. Perhaps that’s the biggest lesson I’ve learned. Now, my unhealthy quest for perfectionism has been replaced by grace and healthier habits. Here’s what I’ve learned so far.

Work

Since my job loss from the pandemic and my subsequent MS diagnosis, I’ve had to have a difficult and challenging conversation with myself about realistic expectations and limitations. Remote, flexible work from home is key for me due to the unpredictability of my symptoms. Finding roles where I can effectively manage my triggers, such as stress, is imperative. I thought this would mean the death of my career, but instead I’m discovering and prioritizing the things I am best at, the things that bring me joy, and the things that are my passions.

Preparation

Living alone forces you to consider risks and difficulties and find ways around them. In addition to daily pain, I live with chronic fatigue, bouts of dizziness and balance, cog fog, weakness, spasticity, and occasional double vision. So I have learned to plan for those eventualities rather than be surprised by them.

• I keep hiking poles in my car and apartment and use them when I’m out and about by myself. I have had stumbles and falls in public or out walking; I would still be on the ground, if not for the poles, which gave me the necessary leverage and support.
• I have daily pain flares that sometimes leave me on the floor, unable to move. That’s why my Apple watch is always attached to me as a constant source of connection, and my phone rarely leaves my side.
• My adult children, my doctors, and my hospital are the top contacts in my phone, and my kids always have access to my car and my home.
• I make sure I can tackle any symptoms at home by being overly prepared. I keep eye masks in the freezer for when my eyes ache and don’t work right. I have pain medications and my medication journal with me at all times. I have a list of doctors and prescriptions accessible and easy to find in case of an emergency.

Getting out — or not

I’ve become a fan of Lyft whenever I need a lift. I plan any outings for the time of day when I usually feel my best, which is in the morning. Thankfully, even when I feel like I can’t leave the house, I can almost always get whatever supplies I need.

Because of COVID, home delivery is everywhere, and it’s a game-changer! Meal delivery services, groceries at your door, overnight and same-day shipments, pharmacy delivery options, and even pet food on the stoop. Yes, it costs me a bit more, but it alleviates the stress of going out when it’s either unsafe or unrealistic.

Healthcare

Living alone means making and remembering appointments on your own, being prepared with questions for your doctor, taking notes, and tracking medication status, to name a few challenges. Since I don’t have a partner or in-home caregiver, I needed to find a way to ensure I don’t miss these critical details. MS has affected my memory and ability to concentrate, so if I’m on a telemedicine call, I ask if it can be recorded and shared.

Mental health

I’ve begun exploring new methods of caring for my mental health. For example, meditation has become an unconditional part of my day. I also tune into a lot of Brené Brown videos and podcasts! I keep a vision board to help me stay focused on what I want to bring into my life; it’s great when I get discouraged. I’ve always journaled, but recently I’ve put more emphasis on using it as a gratitude journal. This has helped me focus on what I have to be thankful for rather than allowing fear to take over, which is a danger when living alone and managing this disease.

Social life and recreation

Living alone through this new chapter has forced me to find new things to enjoy, hobbies, and interests to adopt. I can’t hike a mountain right now, but relatively flat, tree-lined trails are perfect. I’ve discovered a love for puzzles and word games, as well as regular Facetime sessions with out-of-state friends and relatives. I’ve searched online for an MS tribe to call my own, and have discovered a web of support. I even started getting to know my new neighbors, who were kind and understanding, even taking me to the hospital several times, and providing friendly company when I felt isolated.

Living with intention

Once I started getting a handle on the practical matters, I made a conscious decision to begin living with intention. In truth, I never embraced that concept until MS entered my life. I have always had a somewhat impulsive and compulsive spirit. Still, I knew that if I was going to make friends with this disease and live independently, I needed to focus on making intentional, informed decisions.

I began reevaluating my values, dreams, priorities, wants, and needs; then I started figuring out how to achieve those as a single woman living with a lifelong, progressive disease. I love to travel and have visited many places by myself. Traveling solo may no longer be realistic, but I won’t give up that passion and now plan trips with friends who share the same love of globe-trotting. Moving closer to my family and circle of friends became urgent. My dreams have changed, but not in a bad way. They’re more realistic. I may not be able to hike 14ers in the Rocky Mountains, but becoming an active advocate for MS is within my reach.

The takeaway

Multiple sclerosis may have robbed me of my stiletto heels, my daily glass of wine, and size two wardrobe, but it will not take from me my independence until I decide that time has come. I have rediscovered just how unlonely being alone can be, and MS won’t take that away from me again.