MS Anxieties: Loss & Progression

In this series, we discuss causes of anxiety for those facing physical illness and its side effects. Phrases in bold are the words of our community members across various conditions on what it's like to deal with these anxieties.

You don’t feel like the same person you were before. You may wonder how long it will take to feel “normal” - or if you ever will.

"There's nothing I can do to make it go away"

While you try to control what you can and prevent the worst of your condition, there's a lot more that's out of control. When it comes to progression and recurrence, you might wonder what will come in the next five, ten, fifteen years. It can be scary to imagine how symptoms and side effects might change or intensify with time.

"Not being able to do anything the way I used to do it"

This can be most obvious when it comes to being accountable to others. People mentioned missing work and being less able to care for their children, spouses, and aging family members. Day to day, there are the challenges of chores, the difficulties of continuing old hobbies, and pressure to be there for others the same way you used to be.

"I wish I could participate in life"

Most noticeable are often the social changes; not being available or spontaneous. Hopping in the car for a last minute road trip may be a thing of the past - or at least a lot trickier than it used to be.

"Resentful that your life has changed"

Going out to eat can become an ordeal. A day at the beach can be more stress than fun. Others may not understand the degree to which your life has changed, from exercise to intimacy to daily errands.

Community members also expressed feeling helpless and being concerned about their future, particularly when they saw no hope of a cure.

loss and progression anxieties

Seeking support

It can help to remember that you’re not alone in feeling this way. If your family and friends are supportive, consider sharing some of these anxieties with them. Sometimes they won't be able to understand, in which case support groups and online forums can provide a place to vent. If your anxiety is interfering with daily life, you might find counseling or other therapies helpful.

Here are some ideas for coping when anxiety sets in:

  • When you’re feeling limited or frustrated, make a list of what you do well. It can be something concrete, like your mean poker skills, or something subtle, like empathy or decisiveness.
  • Exercise as you're able! This can include quieter exercises like meditation, stretching or yoga.
  • Give your mind a break - but do something you really enjoy, not just a temporary distraction.
  • Create or do something for someone else. This can help you get out of your own head and feel productive.
  • Check out MS advocate Cathy Chester's article "Why I Choose To Smile Despite The Unpredictability Of Multiple Sclerosis"
  • Read MS advocate Devin Garlit's article on "Finding That Passion"

What worries and fears do you experience? What are your tips and tricks for dealing with them? Share in the comments below:

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