Cathy Chester | An Empowered Spirit

Six Things I Want You To Know About Multiple Sclerosis And Me

As part of my personal mission as a writer and health advocate, I try to educate others on what it’s like to live with an invisible disease.

invisible illness

Christine Miserandino’s Spoon Theory (www.butyoudontlooksick.com):
Spoonies are people that live with chronic illness; theoretically measuring personal daily abilities as much as one would measure the proper amount of spoons needed for an event or occasion, sometimes having an abundance, other times coming up short.

Because sometimes, when people can’t see your disease, they don’t believe you have one. 

By shedding light on our everyday battles, I hope the information I provide is a catalyst for the compassion and tolerance that is necessary toward bridging an understanding gap.

Step back to make way for a better world. 

1. Don’t feel sorry for us, but do us a favor by learning more about MS.  Then the next time we tell you we’re tired or seem to often cancel plans, you’ll have a better understanding why.

2. We may not look sick, but our immune system tells a different story.  So the next time we need to occupy a handicapped parking spot, first ask if our placard is registered before you begin shouting at us. We truly appreciate your concern.  But we think you should treat a disabled person with the respect we deserve.

3. Practice compassion and tolerance whenever you see someone with a disability.  Our road is a daily battle of maneuvering the challenges of life.  The things able-bodied people take for granted, such as walking, talking, dressing, exercising, seeing, peeing, pooping and intimacy is considerably more difficult for people with disabilities.

4. Help us keep our self-respect intact.  Imagine falling down in front of a crowd and people begin to whisper that you look drunk.  Or you find yourself attending an event with friends but are unable to keep up with their fast pace.  We don’t enjoy burdening others with our issues. But in our silence, we’d be comforted to know that you understand why our bodies are disobeying us, and that you’ll be willing to slow your pace down to help us feel better about ourselves.

5. Be patient.  We are fearful of the next exacerbation (flare-up) that may wreak havoc on our bodies.  So if you’re trying to make plans with us, and we seem to ask a lot of questions (how long will the event be, where is the nearest parking lot, is the venue accessible) please be mindful that there’s a reason why we’re asking so many questions.  It’s not that we don’t want to see you; it’s simply that we need to take care of our MS.

6. We’re often tired.  I know you are too, but I doubt it’s the same kind of fatigue. Because when we’re tired, it feels almost like we have a nasty case of the flu, only 1,000 times worse. Every part of our body cries out for a nap, and no matter where we are or what we’re doing, we have to find a place to rest. So please understand why we may have to leave a party early or cut our visit short.  In a perfect world we’d love to stay, but our brain is yelling at us to rest.

We’ll make up for lost time the next time we get together. That’s what we’re telling our hearts.

48 thoughts on “Six Things I Want You To Know About Multiple Sclerosis And Me

  1. Linda Ann - Kicking MS to the curb

    Sorry – I linked to the wrong blog there …

    Here’s my MS site. Kicking MS to the curb

    I struggle with some of the same concerns. Although I hope our best days (and RRMS UP-times) offer hope to others, rather than discouragement. Any MSer could face remarkably different circumstances (and physical capabilities, in particular) without warning.
    Glad to find your site!
    Linda Ann – Kicking MS to the curb recently posted…50 Mistreated Words and Desecrated Phrases: Of the upmost importanceMy Profile

    1. shifrachester@gmail.com Post author

      Thanks, Linda Ann, and thanks for your site.

      Yes, MS is so unpredictable. More reason to live each day as fully as we can within our abilities.

      Thank you for sharing your comments – twice!

      Best to you always~
      Cathy

  2. Claudia Schmidt

    My mom would get sooooo tired, Cathy. And, we’d have to work out, in advance, how she would navigate an outing — whether we’d need to bring her wheelchair if it was a long walk from the car, or if it was a longish walk outside– and we’d have to figure out how to get her up stairs, if the place we were visiting didn’t have an elevator. It was hard for her, because she was so independent, but she still persisted and we were able to include her in a lot of things up until she was in her 80s. She took a lot of naps and we knew not to interrupt when she was tired, she was wiped out, and needed a lot of sleep. Thanks, as always, for sharing your life with others. It will help so many others and open many minds. Hugs.
    Claudia Schmidt recently posted…Cleaning The PoolMy Profile

    1. shifrachester@gmail.com Post author

      Thank you for sharing your mom’s story, Claudia. I am sure it is not always an easy thing to do. You are a wonderful lady and an extraordinary daughter for taking such good care of her.

      Thank you for sharing and also for reading and commenting on my post.

      Best~
      Cathy

  3. Kathy @ SMART Living 365.com

    Hi Cathy! I think this is so important to share because (unfortunately) it is very easy to forget that a person has an illness unless it is obvious. If I see you, or anyone, and they look okay it is pretty normal for most of us to think that what we see is everything going on. It’s not of course, but we have to stay pretty awake and aware in order to do that. Keep reminding us, and hopefully we will all remember more often. ~Kathy
    Kathy @ SMART Living 365.com recently posted…7 Reasons Why Play Needs To Be A Part Of A Happy & SMART LifeMy Profile

  4. Liv

    It’s incredible how insensitive people can be, isn’t it? I had a placard in my window after my car accident because I had trouble walking longer distances. We got out at a hardware store once, a guy passing remarked “yeah…you really need a disabled spot” under his breath as he passed my husband. My 6’5′, former rugby player, built like a brick s**thouse husband. Who, very firmly, and a little loudly, told the guy that he had some issues with sensitivity, and that the placard wasn’t for him, it was for his wife (I was getting out of the other side of the car with my crutches). The guy turned a nice shade of white, apologized first to my husband, then to me (after my husband suggested it), and walked back to his car. I suspect he won’t make that mistake again. We cured a little bit of ignorance that day. But people should certainly remember that those spots are needed, and if someone is parking there, it’s likely for a reason.
    Liv recently posted…Crying Wolf in the Age of Social MediaMy Profile

  5. Laura Halacy

    Thank you so much for this list! I like them all but especially # 3, #6. Not being able to go to the bathroom when you feel the urge and then can not get your body to cooperate is frustrating and when people say “but you look so good”! what do they want me to look like? and the “ya, I’m tired to” or with the memory issues- you’re getting old!. it is nice to see this. Again, thank you.

    1. shifrachester@gmail.com Post author

      You are so welcome, Laura. My hope for you is to live the best quality of life possible despite whatever issues you experience with MS. I know it’s hard sometimes – very hard – but at least our community is there to help each other!

      Best to you always~
      Cathy

  6. Maxine

    Hi Cathy, so happy to have found this post on FB and your blog! I really enjoyed reading this post, I understand so much of it. I would like to share this post with the one (or so) person who reads my blog. I really believe that MS education is one of the best things that someone without MS can do for their loved one with MS!

  7. Rena McDaniel-The Diary of an Alzheimer's Caregiver

    I absolutely love this! While I don’t have MS I do have RA and the things you are saying I want to say so many times! I have hurt people’s feeling, lost friends because of them not understanding that I have serious limitations. I don’t want pity. I want UNDERSTANDING! I have shared this everywhere and I hope people will take heed. Thanks so much for this!
    Rena McDaniel-The Diary of an Alzheimer’s Caregiver recently posted…CAREGIVING IS MORE THAN JUST A TITLEMy Profile

    1. shifrachester@gmail.com Post author

      Robyn,

      Thank you and PLEASE keep me posted about your books. I hope they are a huge success because I would love seeing a main character having MS.

      Thank you so much for reaching out. I am sorry about your mom, and also that you were misdiagnosed. How awful.

      I hope you keep in touch.

      Best always~
      Cathy

  8. Kay Lynn

    As always, I value your insight into this disease that my cousin deals with. I complain about my Hasimoto’s making me tired but I can only imagine what MS does to one stamina.

    P.S. I can’t believe people yell at anyone with a handicapped placard. It’s pretty ignorant to think all health issues are visible.
    Kay Lynn recently posted…Weekly Chronicles: 4th of July EditionMy Profile

    1. shifrachester@gmail.com Post author

      We all have our own issues to deal with, Kay, so Hasimoto’s is also a lot to deal with. I wish you healthier tomorrows and joyful todays. I will be thinking of you.

      Yes, people really do give me a hard time. I don’t “look” disabled!

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