Talking with Friends and Family about Multiple Sclerosis & its Symptoms

For this month, we focused our blog around managing MS.  Some helpful tips were provided and the one that sticks out to me was about “asking for help”.  Understanding your limits and what you are able to accomplish in a day is a great way to conserve your energy and focus on what is important.  Often times it is important to involve those around you, but navigating the “how to” is a challenge.

For those who struggle with the symptoms of MS that may not be visible (i.e. fatigue, pain, and cognitive changes), the hidden symptoms of MS, asking for help from a friend or loved one can often be a daunting task.  We frequently hear and read stories from individuals who feel guilty asking for help, because they don’t feel that they “look” sick.  They fear they will be judged in asking for help.

It may be helpful, before you tell everyone about your MS symptoms to think; does this person play a significant role in my life? And, can I rely on them in the future if I need help?  If the answer to both of these questions is yes, then it is time to put on your teacher hat and educate those identified helpers about what types of symptoms you experience and what they may look, or sound like, for you.  MSAA’s The Motivator Winter/Spring 2013 edition discusses may of the hidden symptoms of MS: http://www.mymsaa.org/publications/motivator/winter-spring13/.  This publication can be shared with friends and loved ones to further provide education and information.

Not every person with MS experiences symptoms in the same way, so providing information as to how MS looks and feels to you is very important.  With more understanding and better education, we can hope to reduce the stigma around the hidden symptoms of MS and promote a more positive experience for both yourself and your loved ones.

Please share your experiences, have you had to educate your friends and loved ones about the symptoms of MS?  What has worked for you?

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Comments

  • Miriam Sommers says:

    Because I dont look sick, it was very hard for friends and even family to understand what I was feeling. I would tell them that for me, walking even short distances like from the house out to the mail box felt like I had heavy weights attached to my ankles and I just may not be able to make it. When I wanted something that was in the other room, I would always have to decide how badly I needed it and 75% of the time, I would do without it.
    I am used to running my own retail bakery and managing a household. I did not take this M.S. thing very well. It goes against the way I have always lived and done things. Asking for help is very difficult for me yet I really need it!

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