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