To My Boyfriend: I Am Sorry I Hid My MS
When we first met, I wore a pretty dress in my favorite color. With heeled sandals and just-applied make-up. I wore my best smile.
I looked healthy. I wanted to be healthy.
After, you hugged me goodnight, and said you’d call – and I knew you would – I left and felt like a false advertisement.
You see, I wanted to look healthy. I want to be healthy. For you, yes. But also for me. I wanted to show you the best of me. I wanted to be my best me.
Here’s what I didn’t want you to see that first night: My multiple sclerosis (MS).
We talked. We went on another date. I told you I have MS. I know you struggled with what to say. I didn’t expect you to call after that.
But you did.
We’ve been together several months now.
I still try to look like a false advertisement. I still want to be pretty for you, and energetic, and healthy, and normal. I so badly want to keep up. I don’t want to look over my shoulder at the healthy girls and wish you were with someone like them – so they could give you everything I never can, and never will be able to.
I think by now, you see through the mascara and the cute clothes. Because at this point, I can’t always hide how exhausted I get. How terribly run-down I am, every day. You’ve seen me now, after long days and weekends. What the end of a day can look like for me. The times I can’t eat, and the times I can’t walk well and the times I’m in pain and fussy. The times when I can’t lift my arms, or cut my food, or jog up the stairs, or see quite right, or think through something as simple and silly as to which direction the hot water comes from.
You’ve also seen me dance ballet. You’ve seen me run into the lake. You’ve seen me smile. You’ve made me laugh. You’ve watched me hug a dog. Cook dinner. Accept an art award. Write a news article at rapid pace. Brush my teeth. Take a shower. Slice an apple. Take a nap. And another.
I am sorry I tried to hide my MS, and at times, I still do. I am sorry for all the times I pretended to be OK when I was not.
I am sorry for the times I pushed away so you wouldn’t see the broken sides of me, or my bad days. I am sorry for the times I wasn’t feeling well and was in wretched pain, but didn’t tell you. I am sorry I tried to pretend a smile or a joke, and failed.
I know you are young, athletic, healthy, handsome and a truly beautiful heart. I see that you have a hard time grasping how I can go from one good day to another day where all I do is want to sleep. I understand you have no idea what my condition truly means. I see you try.
MS is beyond my control, it has changed my life and changes it as the years go by. It impacts me physically, mentally, emotionally. Yet, I am still solidly me.
I am also tired.
Every day, I am so tired. From the soul-crushing all-consuming debilitating fatigue that is my MS every day, to the emotional toll it takes on my body and my mind. There are days I don’t want to do this anymore. The days that I am shattered by the reality of it all. And it kills me there have to be days you don’t want to watch me do this anymore.
Then there I days I see a sunrise and realize all I would miss if I were not here. I see the waves crash over the sand, a bird on the wind, the chalk scrape of a moon, the brilliance of a just-fallen raindrop. I hear a favorite song come on the radio, the shrill of spring peepers, the call of an owl. I feel your fingers entwine with mine, the warmth of your kiss, the sweet of your smile. These days, make me want to stay and endure the struggle.
The truth is, I am all of these things. I am falling apart. I am in pain. I am scared of my own future. I also am a runner and a dancer and a writer and I am resilient and I am petulant and I am strong.
If you stay, truly stay, the façade will fade entirely. The false advertising will rub away and show the true colors that are me, the best and the worst. Eventually, you’ll see me fall apart. You’ll see me after my MS treatment, or during a relapse.
Thank you for staying. Thank you for coming at all. It is you, the few people I have in my life like you, that remind me it’s worth the struggle and the fight. That I am wanted, valued. People like you, make me want to get up another day. And put on another pretty dress and try again. And again. And again.
All my best,