A Day In The Life…With an Invisible Disease

If I had a dollar for every time someone told me that I don’t look like someone with MS, I’d be able to afford my health insurance! But seriously, do you know someone who has MS or another invisible disease?  Or maybe you have one yourself and you wonder if anybody understands.

 

Meet Chadd Bartlett

He’s a really kind, smart and funny guy who’s a web/graphic designer for a law firm in Atlanta and he just happens to have the MS Monster just like me. He was diagnosed with the relapsing and remitting form of the disease in 2003 at the age of 28. Walking, even with his “stick” as he lovingly refers to his cane, is his greatest daily challenge. After a particularly rough day when his employer didn’t understand his plight, he shared these words:

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“I wish I knew how to explain to certain people how individual a disease like MS is. It’s an autoimmune disease that affects the entire nervous system. It’s NOT a paper cut. It’s NOT a sprained ankle. It is NOT “being tired”. It affects each and every person who has it differently because no two MS Warriors (as we call ourselves) have lesions or scars in the same locations in their brain or on their spinal cord. Multiple Sclerosis means Multiple Scars.

What it IS is a constant battle. A battle that rages within the body. A battle fought by the immune system against one’s own nervous system. It affects memory. It affects energy levels. It affects speech. It affects cognitive ability. It affects digestion. It affects bladder and sphincter control. It causes pain (and you don’t know pain until you’ve had the MS Hug. I’ve had and passed kidney stones; the hug is much, much worse.) It causes mobility issues. It causes stares…

It is convincing people that say “But you don’t LOOK sick” just what an invisible disease is. It’s having to navigate the world with a cane, or a wheelchair, or a walker, or a scooter. It’s having to think about and/or plan everything you do in a day to make sure you have the energy to get through it. It is being a master of logistics. It’s extreme fatigue: MS fatigue is running through an airport late for your plane wearing every article of clothing you own while carrying an elephant on your back. And it never. Goes.  Away.

It’s sleeping for 10 hours and waking up exhausted. It’s telling your friends, “No, I can’t tonight” so often that they stop inviting you. It’s loneliness. I don’t have friends to hang out with anymore. And the emotional pain is as real as the physical pain.

Its being an athlete and fighting through your physical limitations. It’s making plans you can’t fulfill. It’s being a fighter and never giving up. It’s appreciating the gifts, small miracles and abilities you receive. And they don’t come in packaged boxes with ribbons.

It’s loving the people who support you and try to understand you (you don’t *get it* until you get it, but the struggle to understand and sympathize is both encouraging and strengthening).

It’s not the life I asked for. It’s not the life I wanted. But it’s mine, and I’m going to own it.

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His greatest advice for anyone struggling with adversity, “Don’t give up! Every single day is a challenge but every day also presents new opportunities. Those opportunities don’t present themselves if you give up!”

Thanks for sharing and opening our eyes and our hearts a little bit wider! Love you Chadd!

About Gina Whitlock Fletcher

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