The Hurt and Loneliness of Living with Multiple Sclerosis
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Profile photo of Cathy Chester

I’ve got loneliness on my mind and I’d like to, as the author Elizabeth Lesser says, break myself open.

Please don’t confuse loneliness with feeling alone. They are two separate things:

Loneliness: Sadness because one has no friends or company.
Alone: Having no one else present; on one’s own.

I’m never alone because I’m blessed with a loving husband and son who are unconditional in their daily support of my struggles with MS. Feelings of loneliness are a whole other ballgame.

I was born with a happy disposition, a half glass full kind of girl.

That characteristic carried me through my first decades of life. It was always there to lean on when I needed it. My childhood resembled Opie Taylor’s on The Andy Griffith Show, and despite MS, my young adult life was a relatively happy one. When I reached my fifties MS began taking its toll on my physical and emotional health. I still feel young at heart but my body feels elderly.

I’ve noticed that my MS doesn’t bounce back like it used to. As much I try to keep stress at bay it seems to be winning the war. Here’s a small example about me and stress.

One day I was trying to focus on a positive image before meditating. I wanted to remember what a “normal” day felt like. I sat still and thought. A brief yet foggy image came to mind. I was elated. Then I was deflated.

My image faded quickly into the darkness, gone forever. I was overcome with sadness because feeling “normal” is no longer part of my life. My legs began to tingle from the stress of this great disappointment.

What DOES “normal” feel like?

Many of us take our blessings for granted. They are small yet truly miraculous.

Driving, walking, eating, shopping, exercising, dressing, standing while bathing, planning, chatting, laughing, running, bicycling, feeling physically energized, cleaning, sewing, cooking, baking – oh, everything. Like children we once felt invincible. Strong and vital without a care in the world. MS reminds us that life moves on and that invincibility will never be an option.

The great tragedy of being diagnosed with MS is that we deserved more time to feel normal.

For me, the feelings of loneliness came on slowly. In my twenties, thirties, and forties I peacefully coexisted with my MS. Perhaps it’s because my body responded quicker to medications. I slept better, walked farther and worked out at a gym.
I was also (happily) distracted with the blessing of raising our son. I pushed past my MS symptoms to be the best mother I could be. I’d often think of Jackie Kennedy’s quote to guide me:
If you bungle raising your children, I don’t think whatever else you do matters very much.”  
Now that I’m closer to 60 life feels more lonely. My recent exacerbation has dragged on for months. The painful bacterial infection in my small intestine is also no picnic. Together these two battles keep me home most days, except to drive locally (no highways for me) to a doctor appointment or blood test.

All the excitement of life is gone.

I’m doing my best to get out of this funk but it’s not an easy goal. When you don’t feel well life moves on without you.

I’m disappointed in many things:

  • I’m weary of explaining why I need to cancel plans – The introverted part of me detests drawing attention to myself. I’m sick! I can’t walk well! I don’t feel well! Here I am! Unfortunately, explaining is a necessity. Over and over again.
  • The phone stops ringing – This one hurts. People say they’ve been meaning to call, they’ve been thinking of me, they’re busy but thinking of me, their plate is very full, they didn’t want to bother me, they don’t want to disturb me if I’m resting. What stings most are people who don’t reach out at all. They drop out of sight. I know the world doesn’t revolve around me, and people are busy with their own problems. But a thoughtful phone call to show they care means everything.
  • Spending holidays and weekends feeling too sick to go out – The double whammy is my husband doesn’t get to go out either.
  • Social media is filled with lovely posts about beautiful and exciting things other people are doing – It’s been a long time since we took a “real” vacation, went to a show, took a long walk, visited a museum. When you see people doing fun things and you can’t, it hurts. Where IS that fairy godmother to grant me some wishes?

I think I’ve b!@#&ed enough for now. What I want to know is how do YOU handle the loneliness of MS? What do YOU do to make yourself feel better? How do YOU get over the kind of pity party I’m living in? I’d love to hear your thoughts.

I long to return to my usual topics of joy, gratitude, blessings, ability despite disability. But life is not always rainbows and sunshine. Sometimes dark clouds loom overhead. I guess it’s all about how we handle it.
Thanks for listening.

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