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The Distance Multiple Sclerosis Can Build Between Family and Friends

By Heidi Petersen
March 12, 2023

I was diagnosed with multiple sclerosis in 2015. MS has so many unknowns, but I can tell you one thing I did not expect was the strain it would have on my relationships.

Being diagnosed with any illness in your life can be confusing and complicated. I’m trying to figure out a new routine with treatment, medications and day-to-day living. Often, people jump to the conclusion that me focusing on taking care of myself makes me selfish. If I change plans last minute, people take that personally instead of trying to understand what is happening to me.

MS is often invisible, and family, friends and strangers can’t always see what is happening to me. As humans if we can’t see it, we question it, we raise doubt, and some just don’t believe it.

Throughout my journey, I have lost contact with friends and relationships with some family have suffered. I never would have thought I would have to try to convince someone close to me about the validity of a disease. We have family members who have suffered from cancer, seizures, heart problems, etc. Those medical issues were never questioned, the pain was never questioned, and the treatment choices were never questioned.

So why should multiple sclerosis be any different?

This unpredictable, snowflake disease leads me down a road of having to defend myself. This, to me, has been one of the most painful aspects of MS. I explain… and explain again, and again, but still there is this lingering cloud of doubt that hangs over my head, created by others, but painfully hurting me.

Yes, there are days I can wake up and complete my list of tasks and feel fine. But there are days I can complete five of the 10 tasks and be exhausted by mid-day, and there are days that I can’t get out of bed to complete one.

Why do our family and friends abandon us during this? I can’t answer this question, but I really wish I could. I feel forgotten, I feel like loved ones forget, but I can’t force anyone to want to understand what I experience. Do I try? Absolutely!

I have been living with MS for seven years, and sadly, there are people who were a big part of my life who no longer are. I had to allow myself to grieve, and I must continue to move forward. The painful question of, “did they really love me?” goes through my mind, but I know I cannot dwell on this because my health and well-being depend on it.

Ultimately, it is not in our control how others handle our disease. But what is in our control is our power to move forward, take care of ourselves, and surround ourselves with compassionate and understanding human beings.

Here’s my biggest advice if you have someone in your life with MS: be flexible with your loved ones with MS. Don’t judge them if they can’t make the 7 p.m. dinner time, try to understand what they are going through.

Editor’s Note: Explore resources and support in navigating relationships and MS on the Society website.

Heidi Petersen

Heidi was diagnosed with multiple sclerosis in 2015 and most recently has been using areas of self-care to navigate the challenges she has faced. By being her best self, she feels she can offer that much more to others. Most recently she has participated in pageantry to not only challenge herself, but to share her story. Follow her on Instagram @msusaelite.

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