An Empowered Spirit Blog Post

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

By Cathy Chester on June 28, 2014

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.

Caring for those with invisible illness like MS

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. 

How you can help someone with MS or other chronic illnesses

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. Learn more about MS here

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.

More MS Resources here

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

Author

Cathy Chester

Comments

  1. Even though I don't suffer from the MS, I struggle with my own invisible illness, and your words ring so true. Thanks for the uplifting post.

  2. 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!

  3. 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.

  4. 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

  5. Great article. I think invisible illnesses are even more frustrating when they develop later with age. You remember what it's like to be able to do so much more. It's like your body is betraying you and there is nothing you can do about it.

  6. 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.

  7. 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.

  8. My Son's girlfriends mother has MS. I think she struggles with these issues that you mention. People don't understand her or even assume she is faking or not trying. Yet, she like you tries to live with it all in a "Normal" world. Shadow ever hovering...

  9. 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!

  10. 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!

  11. I am writing a series of novels in which the main character has MS. my mom had MS and I was misdiagnosed with it for 6 years. Great information here, blessings to you on your journey!

  12. 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.

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Mission
The mission of this blog is to encourage those with MS, to educate the world on what MS is and isn’t, and to help those with MS live a joyful and empowered life.
This blog and the information contained here is not meant to be, and is not a substitute for, medical advice. If you are wondering if you have MS, or have questions related to the signs and symptoms of MS, please contact your physician.
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