A Letter to My Friends Explaining Who I Am Now That I'm Ill

Dear friend,

You may have known me before, during my healthy days. You may know who I used to be. Or I may have met you after this medical mess began; you may only know this me. But this letter is to all of you. If you’re in my life, and you want to understand, this is for you.

If you live a distance away, I wish I could see you more. I dream about what my life would be like had this illness never taken over. I would be the first to take a plane to visit my friends. I would take the train to have lunch and catch up. I would drive many miles to have reunions that would bring back memories of childhood, high school, and college. This is how I wish I could be: independent, spontaneous and active. But there is so much you don’t know. If you can be open minded, I’ll try to explain why I can’t be this person that I truly am deep down inside.

I drive minimally, and there are some days I don’t drive at all. The weakness in my legs makes it impossible to hold the pedal down at times. Even on great days, my strength only allows me to push the pedal for short drives. Taking the train means that I must walk when I get to my destination. Walking as my only means of transportation through a city is like setting myself up for failure. Even using cabs requires standing that my body cannot always handle. And flying?  Getting through an airport with weak, shaky legs is a very anxiety-producing experience.

These are not excuses. These are real life limitations that I am dealing with. I would give anything to be able to live my life as I wish, but life is not always fair. Please, continue to invite me. But, please, always understand that when I say I can’t, it is a matter of fact and not a matter of choice. There is never a time when I don’t wish I could be more social.

It is nearly impossible to explain how my body feels. My legs don’t take me the distances that yours do. They wobble and shake and begin to hurt from small amounts of walking. My arm muscles are very sore from the moment I wake up and only worsen with use. I know what it feels like to be well. Somewhere, in a deep crevice within my brain, I can remember what healthy feels like, and my body is nowhere near there.

You ask what is wrong with my body. I desperately wish I knew. Could it be from my autoimmune thyroid disease? Likely. Could it fall into the realm of chronic fatigue syndrome? Possibly. Am I having mitochondrial dysfunction? Yes, but with an unknown cause. The one thing I know for sure is that this is a real, life-altering muscle condition.

I could go on to explain to you why I can’t always bring both children to a birthday party alone. Or why I can’t always meet you for a play date with my children when my husband is at work. You may wonder how my family goes to the aquarium one day, but the next I’m unable to walk much. But I’m going to simply ask you to believe me when I tell you I can not. I am doing the very best I can given my situation. And I hope you can see that.

I want to be the best friend that I can be. Life has been a tremendous struggle for me over the past decade. I really have no words to explain how frightening, stressful, and difficult it has been. I take each day as it comes, never planning very far into the future. So the next time my disability affects our friendship, I hope you’ll remember my words. I hope you will try to understand that I am still the same person deep down inside. And I need you now, more than ever.

Sincerely,

Your chronically weakened friend

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