A letter to my loved ones about supporting someone with MS
Showing up can look different each day because of this disease's unpredictability
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Dear family and friends,
Over the years, I have wondered how my diagnosis of relapsing-remitting multiple sclerosis has impacted your worlds, as well. Just as I am unable to convey the impact of its collision with the life as I once knew, I imagine those words don’t necessarily come easy for you either. It is fascinating how a few words from a doctor can have a ripple effect across so many lives.
This letter, from someone who has lived with multiple sclerosis (MS) for many years, is written in the hopes of bridging the gap between myself and my support system.
Supporting someone with MS isn’t about attempting to “fix” things, and it doesn’t have to be continuous grand gestures. It’s about doing what you can, in ways that are realistic for you, to help life feel a little more manageable, predictable, and understood. That said, showing up can look different each day because of the unpredictability of MS.
The symptoms I experience, such as chronic fatigue, pain, migraines, bladder incontinence, vertigo, and more, can change in an instant. This means that, even though I might have been fine yesterday, today my plans may be canceled at the last minute because my energy bar is quickly running out. Flexibility is invaluable and one of the most meaningful forms of support you can offer me.
When my go, go, go won’t go
One struggle I constantly face is to learn to respect my own energy limits. As someone who has an innate desire to go, go, go, I often forget that the repercussions of draining my battery are never worth the constant push to keep going. Please recognize that it’s not about will, but capacity.
This means being OK with low-energy activities while planning for MS triggers, such as heat and stress, taking breaks without inducing a sense of awkwardness, or being OK with shorter visits. These small acts of understanding and adjustment show me that you respect my limitations and take into account boundaries I can be too ashamed to admit.
Some days are going to appear worse than others, and you may not know what to say, but please know that I have never expected you to have the perfect words, or to say you can’t fully understand what it is like to live with MS. You don’t need to be an expert on this disease. I just need your presence and care, for you to be flexible and patient, to stay present, even on days that appear unclear or when I lose the words to express how I feel.
These small acts of service can make my days feel less heavy and burdensome.
With all of my love,
Your beloved Desiree
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
Lisa Bowser
Thank you for your article. You have said it all well. I know exactly how you feel. My friends and family don't really understand this disease, but they try their best. My husband can just look at me and know that I need to retire for the evening because I can do no more. He sends me upstairs while he does the dishes. It is so appreciated. I am exhausted as I write this, just recently going through a total right hip replacement after falling. I tend to think my balance is what caused it, but I don't like to place blame. The heat is starting to set in for summer, so my balance is definitely not cooperating and my eyes are very fuzzy. The fuzzy eyes are a new symptom. Stay blessed and continue to be a blessing through your much appreciated articles.