“An Educating Tool”
I was in the middle of writing a blog about what folks with MS really need from others when I came across this pin I found on Pinterest. What an extraordinary pin to share with my peers!
Because I still look so good after all these years and rarely complain, people around me sometimes still don’t seem to understand my difficulties since MS is invisible, unpredictable, and interfering. And it is probably because I am so good at the way I manage this disease, despite the fact that I use a wheelchair. I make it look so easy, when the truth is, it can be a real bitch.
For people who are just learning about how to live with a person with MS or who is chronically ill, a copy of this will be a good, educating tool.
“People with chronic pain and illness want everyone in their lives
to know these important things about them…”
1. Don’t be upset if I seem on edge. I do the best I can every day to be “normal”. I’m exhausted and sometimes I snap.
2. I find it very hard to concentrate at time for a lot reasons. Pain, drugs, lack of sleep… I’m sorry if I lose focus.
3. Letting my loved ones and friends down by cancelling plans is heartbreaking to me. I want more than anything to be as active as you and do the things I used to do.
4. My health can change daily. Sometimes hourly. There are a lot of reasons this happens. Weather, stress, flare-ups…I can assure you that I hate it as much as you do.
5. I don’t like to whine. I don’t like to complain. Sometimes I just need to vent. When this happens, I am not asking for pity or attention. I just need an ear to bend and a hand to hold.
6. During rough times, I find it hard to describe how bad it is. When I say “I’m fine” and you know I am not, it’s okay to ask questions. Just be prepared if the flood gates open because “I’m fine” is often code for “I’m trying to hold it together, but having a rough time. I’m on the edge.”
7. If I am hurting bad enough to tell you about it without being asked, please know that it’s REALLY bad.
8. When you reach out to me with suggestions to help me feel better, I know that you mean well. If it was as simple as popping a new pill, eating differently or trying a different doctor, I’ve most likely already tried it and was disappointed.
9. All I truly want from you is friendship, love, support and understanding. It means everything to me.
10. When someone gives me a pep talk, I understand the sentiment. Chronic illness just doesn’t go away. I wish it did, too! I appreciate your wanting the best for me, but save the pep talk for the gym or the kids’ next volleyball game.
11. It hurts worse than you can possibly imagine when I’m thought of as lazy, unreliable, or selfish. Nothing is further from the truth.
12. I do a lot of silly things to distract myself because any part of my life not consumed with pain is a good part.
13. The simplest tasks can completely drain me. Please know that I do the best I can every day with what I have.
14. Come to me with any questions you may have about my condition. I love you and would much rather tell you about this face to face without judgment.
After all these years I have lived with MS, I may put this on my refrigerator at times; or give a copy of this to the forgetful numbskull or the insensitive ostrich that has their head in the sand! (Yes, I think we all have a person or two like this in our lives.) And, the next time someone says “What’s wrong with you?!” I think I will tell them to read #___.
Author/MS Counselor/Living with MS