Your Life With Multiple Sclerosis: What Do You Want Friends and Family To Know?

Donna Sullivan
Written by
Donna Sullivan

As a caregiver for two children living with pain conditions, I have learned the hard way that when it comes to knowing how to help them, I may not always know what to do.

I thought I did. I read up on their conditions, and put everything I had into being their mom, motivator and personal cheerleader. But each day is different. Symptoms vary, and emotional challenges, stress and life commitments are always changing. I can’t climb inside and feel what they are feeling or know what they are experiencing – as desperately as I may want to. Sometimes they want to open up and talk about how they are feeling, and other times they just shut down and retreat and I have no choice but to let them go. It is easy for me to make plans and forget the fact that they may not be up to it on that particular day, or annoy them by spending too much time researching symptoms online or talking about workarounds for tasks they just want to figure out themselves.

Over the years working among many friends and colleagues who are living with MS, it has become abundantly clear that unless you are living with MS, it is next to impossible to truly understand what it is like. And while there is no guidebook to give to friends and family on what you need, perhaps addressing this topic head on is a good place to start. So I asked several MS friends about the top things that they wished people knew about their lives. Below are some highlights and I invite you to our Living Like You Facebook page to share your own thoughts on what you want others to know.

• Just because I look healthy does not mean that I feel good.

• I am not lazy – MS fatigue is crushing and real. I wish I had the energy to be more productive but many days I do not. Naps can be a necessity, not a luxury!

• Please do not compare me to other people who you know that live with MS. MS symptoms and progression varies for everyone.

• Managing my health must now be part of my focus, and that is an added time requirement (and sometimes financial factor) in my life.

• Late nights and hot weather can exacerbate my symptoms. It is not that I don’t want to go to the beach with you, or party until the late hours, I do…but I can’t or I will pay for it tomorrow.

• Thank you for the information on a new treatment, diet or cure, but please do not pressure me to follow up on it.

• I am happy to meet your friend who also has MS, but please keep in mind that just because we share the same disease does not mean we will become BFF’s.

• Although I may have had the energy or ability to do something one day, it does not guarantee that I will be able to do it the next.

• Flexibility, support and understanding without judgment are probably the most important things you can offer to help me.

• I may not want to always talk or share my conditions with others, please let me take the lead on this.

• I am still ME!!!!

I welcome you to share this article with loved ones and people in your life in an effort to promote discussion and hopefully more understanding. Please join us on Living Like You Facebook and share more of your thoughts on what YOU want them to know about your life with MS.

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