Being Aware

With MS Awareness month (that would be March to you civilians) almost over, I have been thinking about what I should write. How to make you more “Aware”. Truth is, nothing I write will matter. 

Yay, you know about MS. Yay, you know some of the symptoms. Yay, you might have a vague idea of life with MS. Unless you have it (and to be crystal clear, I don’t wish this on ANYONE, and I mean I wish NO ONE EVER got the MS diagnosis- not even my worst enemy), you won’t fully understand. MS Awareness Month is every month for me. I am painfully aware of MS twelve months of the year. I don’t mean this in a “poor me” way, it’s just factual.

Conversely, while there are similarities with other diseases, I don’t fully understand them on a deeply personal level. I know people with Rheumatoid Arthritis, with Lupus, with Fibromyalgia, with Depression, and with other chronic conditions. I sympathize, I commiserate, maybe we even have a symptom or two in common. But I don’t know precisely how they are feeling. One thing I don’t do- ever – I don’t ever suggest how they manage their disease. I may ask if they heard about a study or a new medicine, but I don’t tell them what they should be doing. EVER.

I don’t grill them about every treatment they have ever tried, I don’t chastise them for stopping a treatment for whatever reason, and I don’t make them feel like they should do more to “cure” their condition. I don’t tell them that my neighbor’s cousin’s friend’s middle school teacher ate nothing but marigold petals and it cured his disease. I don’t make that person feel inferior for not trying the marigold petal diet to “cure” their incurable condition. I know it's difficult enough to live with a condition that's unpredictable and incurable. I don't want to add something else to deal with by badgering someone.

So in a nutshell, I think I figured out this “Awareness” thing. I would respectfully ask that you not offer “helpful advice” that includes suggesting supplements, diets, getting more rest, sleeping less, exercising more, drinking water, choosing to be happy, going outside, or smiling more. I would respectfully ask that you don’t chastise the person for not trying your suggestions. I would respectfully ask that you don’t talk to the person as if it is their fault they have the disease. I would respectfully remind you that if you don’t have that condition, you do not know more about their condition than they do*.

If a person decides that they want to be honest with you when you ask, “how are you”, please know that this person trusts you, appreciates you, and feels safe enough to tell you the truth. PLEASE, please, please be mindful of that when listening to their answer. Please know they are not looking for answers or suggestions, they are unloading a burden. Please let them talk.

 

*** PUTS AWAY SOAPBOX***

*If you are a specialist in that field, there’s a chance you might know more, but believe me, no one does more thorough research than a person diagnosed with an incurable condition.