What My Insurance Company Will Never Understand About MS

Dear everyone who thinks they know Multiple Sclerosis (MS) better than I do (looking mostly at you, big-wig insurance company):

Two simple words can sum up what I think you know about my disease: you don’t.

You were not the senior in high school with numbness in your arm that made your handwriting look like you should be back in kindergarten. The one who could barely feel her right leg. The one whose vision was blurry and whose words were slurred without a sip of alcohol.

You were not the 17-year-old who missed school for doctors’ appointments, blood work (13 tubes of a 5’2″ girl’s blood in one sitting), MRIs, a spinal tap, and countless other tests.

You were not the one who has been broken up with on more than one occasion, by both friends and boyfriends, who could not “handle” the stress and sadness from Multiple Sclerosis.

You were not the one who wondered if you would be able to handle college months after getting the diagnosis.

You were not the one who had to inject yourself on a daily basis just to make yourself feel normal. Do you have any idea how embarrassing it is to tell people you have to go home and inject yourself because of a disease most people don’t get diagnosed with until they’re 40, but you got the pleasure of being diagnosed at 17?

You are not the one who walks up a flight of stairs and feels like you just ran a marathon. The one who can get 12 hours of sleep and be exhausted.

You are not the one who has stabbing pains, memory loss, and focusing problems. The one who blends two words together because your brain thinks much faster than your mouth can speak.

You are not the one with chronic depression and anxiety about what this disease will do in the next month, the next year, the next five years. If I will be able to physically walk down the aisle when I get married. If I will be wheelchair-bound by the time I am 27.

But you are the one who tells me that my medicine is not a “medical necessity.” The pill that will make me feel normal without having to inject myself. The pill that my doctors are fighting for me to start.

You are the one who makes me feel like a small child whose mom told them, “NO, you can’t have that toy” with a slap on the wrist.

You are the one who makes me realize all the horrible things Multiple Sclerosis can do to me because without your help, it is bound to happen.

But, thank you.

Thank you for making me appreciate the wonderful things in my life. Thank you for making me realize that it can be so much worse. Thank you for making me realize that I am NOT Multiple Sclerosis and even with it, I can accomplish so much.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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