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I’ve lived alone most of my adult life and most of my life living with MS. However, the loneliest I’ve ever felt was when I was married. That’s a story for another day. The purpose of this article is to tell people it’s okay to live alone with MS and even when issues arise, there are options. Changing my vocabulary helped me reframe my perspective on living alone with chronic illness. What you want to do is put the illness into a positive rather than a negative realm. 

For example:

• Replace ‘can’t’ with ‘can.’ This doesn’t mean taking a “mind over matter” approach by trying to convince yourself you can do things you can’t. Instead, it means not focusing as much on what you can’t do, and instead relishing what you can. Rather than saying: “I can’t attend a birthday party because I don’t have the energy,” try, “I can meet with friends for half an hour over Zoom earlier in the day.”
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• Replace the word ‘restrictions’ with ‘needs.’ For instance, I need to nap every afternoon to replenish my physical and mental energy. If I don’t, I get so exhausted I might have to spend the next several days in bed. At first, I saw my naps as a restriction that held me – and the people I was with – back. And yes, my daily schedule may be unusual, but it’s because I must meet a need just like anyone else. The more you can accept and honor your needs, the less restrictive they will feel.
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• Stop ‘shoulding’ on yourself. For years, I felt like I should be pushing myself to work or exercise, despite feeling like I had constant flu. People would tell me: “You should go for a walk; it’ll make you feel better,” or, “You should volunteer; then you won’t be so focused on yourself.” For some chronic illnesses, those activities might be helpful; for mine, they would be detrimental. When you hear the word “should,” ask yourself, “Can I? If I do, will it be helpful or hurtful to my health?”
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• Instead of ‘post-traumatic stress,’ think about ‘post-traumatic growth.’ Experiencing chronic illness, especially when it comes on suddenly, can be traumatic. Even if we see improvements in our health, we may suffer from post-traumatic stress disorder. I sometimes still experience flashbacks to my relapse and worry it could happen again. But those who experience PTSD can also have post-traumatic growth, a “positive change experienced as a result of the struggle with a major life crisis or a traumatic event,” according to the Posttraumatic Growth Research Group at the University of North Carolina at Charlotte. Being bedridden was awful, but it also opened new opportunities, new relationships, and a new appreciation for capabilities I had once taken for granted.

Make lifestyle changes

Create a life that makes managing your illnesses easier going forward. This doesn’t mean giving in to the illness or giving up hope. It means allowing space for the physical and emotions your illness brings up. 

 

Living Alone with MS The Living Well Alone Project

Joseph Trunzo, a clinical psychologist who works with chronic illness patients, said, “I tend to frame acceptance as a moment-to-moment experience, being open to whatever thoughts, feelings or sensations one is having – good, difficult, or indifferent – in that moment. If you are constantly struggling to control, escape, or extinguish certain feelings or experiences, you are not able to live your life. Allowing them to be there, as uncomfortable as they may be, allows you to put your time and energy into living your life more.”

For me, it helped to think about the factors I could control in my life. You might ask yourself: What lifestyle changes would honor my health, my needs, and my shifted vocabulary? What changes will help me have as many good days as possible? 

For me, this has meant taking a nap every afternoon, without exception, and finding work that allows me that flexibility; establishing good sleep hygiene; sticking to a certain diet; pacing myself and respecting my boundaries; and adapting my exercise routine to accommodate my illnesses. 

For you, it might mean something totally different. If you’re struggling with chronic depression, an afternoon nap might be counterproductive for you, and it might be better to go for a walk or meet a friend. If you wrestle with fibromyalgia, perhaps there are certain stretches at certain hours of the day that might benefit you. 

The idea is to take charge of your own wellbeing, to the best degree you can, by thinking about shifts that will address your needs in a comfortable and safe way. When you make these types of changes, you’re creating your normal. And that normal will likely change as your illness progresses, or as you experience improvements or setbacks. 

Maintenance mode looks different depending on the illness. For those of us with illnesses that cause post-exertional malaise, pacing ourselves is extremely important. If you have a condition such as diabetes, maintenance mode for you might mean figuring out which foods and mealtimes help to keep your blood sugar stable. Once you determine the lifestyle changes that allow you the best chance of “maintenance mode,” it’s important you honor those parameters. For example, I can be tempted to skip a nap if I want to visit with a friend or have a lot of work to do, but I know the price of doing so is not worth it. 

Only you know what your limits are, and only you and your doctors can determine which ones are best to respect and which can be stretched. Always return to the question: Will doing this help or hurt my health?

Seek the right support

Whether you were born with chronic illness, diagnosed with MS, or whether you have a physical disability or psychological illness, not everyone is going to understand your situation. 

There will always be people who aren’t willing to try to learn more about conditions and their implications. Their expectations of us will not change, so what must happen is our expectations of others needs to evolve. You can’t persuade or enlighten people who don’t choose to listen, so it’s not worth feeling you need to justify yourself or your conditions to them. Focus on the friends, family, and interested acquaintances who want to know more, who ask questions or offer support or admit they aren’t familiar with your condition but want to be.

• It’s not about going back. It’s about moving forward. You aren’t going to be able to go back to a pre-illness state. Instead, you need to figure out how to move forward in the context of chronic illness.
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• You write the narrative. No matter how sick you are or how progressive your disease is, you can take some agency regarding how you write the rest of your life.
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• Shift your vocabulary. Focus on positive rather than negative words, such as what you can do instead of what you can’t do.
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• Make lifestyle changes. Ask yourself: What lifestyle changes would honor my health, my needs, and my shifted vocabulary? What changes will help me have as many good days as possible?
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• Pace yourself, learn your limits, and set boundaries. Figure out what lifestyle gives you the best chance of staying in “maintenance mode.” Then embrace your limits and speak up for your needs.
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• Seek the right support. Find people who are willing to walk the journey with you, even if they don’t completely understand your situation. Research treatments and practitioners to make sure you’re getting the best possible care and remember that you need to look after your mental and emotional health in addition to your physical health.
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• Allow yourself happiness and fun. You deserve – and need – breaks and joy just as much as a healthy person.