Multiple Sclerosis Communication
adapted from The Multiple Sclerosis Manifesto: Action to Take, Principles to Live By, written by Julie Stachowiak, Ph.D.
Saying the words āI am tiredā isnāt really accurate. That is because the right words to describe exactly how I feel donāt seem to exist. I could use all the metaphors or comparisons to something you might have felt in the past (jet lag with a hangover, a heavy wet blanket over my head), but really, they fall short. Attempts to put words to it might come across to you as overly dramatic, exaggerated, or maudlināand knowing you thought that I was any of those things would only make me feel worse.
Letās keep it at this: When I feel this way, my limitations define me in many ways. I am unable to think clearly, I am dizzy, I am nauseated. I cannot fake my way through this unique type of exhaustion. I am depleted, and these are the times that I have to admit, even to myself, that I am not entirely whole or healthy.
I am telling you this because I want you to know about this aspect of multiple sclerosis, which, unfortunately is also a part of me. This will not last forever. I will have times, hopefully soon, when I feel intact again. I will be more functional. Until then, I need acceptance. I know that this is also frustrating and scary to you, and you are not forgotten.
I know all of itāI know that there are people that have it worse than me. I know that being angry or sad doesnāt help me get better, whatever that means. I know that itās not considered healthy to wallow in negative feelings.
I also know that I donāt really care about all of that right now (and maybe donāt even believe it all). Multiple sclerosis has stolen something, many things, from me. I am angry and sad about the things I have lost (feeling good, thinking clearly, being able to plan from day to day, being ānormalā) and the things that I have gained (physical pain, worry about getting worse, confusion, daily reminders that I am living with a chronic and unpredictable disease).
I am not blaming anyone for these feeling, although that would be easier. I am sorry if I lash out at you or turn away from you. I need to battle with these things right now. I will come back. I need patience more than anything, and a little space to finish this round of the fight.
I also know that you may be sad and angry, too. Letās both try to remember that itās the MS, and not us, that is the cause of these feelings.
āI just canāt right now.ā
I want to, I really do. I would love to [fill in the blank] more than you know. I know it would be good for me to leave the house/be with people/have fun. I want to be like a ānormalā person and make plans and keep them. I want little outings to be fun and not fill me with dread, wondering how bad I will feel and spending time strategizing how to make it through the situation or get out of it gracefully. I want to be the person who grabs her sweater or binoculars or sunglasses and says, āCome on! Letās go! What are you waiting for?ā as I beat you out the door.
But I just canāt right now. Iām sorry. Maybe next time. Ask me again, please.