What You Don't See
Last updated: September 2018
“You don’t look sick” is a phrase that I think everyone fighting a battle with Multiple Sclerosis has heard at least once in their life. Discussing how MS is an “invisible illness” is a common talking point among those who suffer from the disease.
I don't look sick but I am suffering
Many use a cane, walker, or wheelchair, however, just as many do not, leaving few, if any, recognizable symptoms for those with untrained eyes. In a world where people seem to only believe what they see (at least when it comes to illnesses), our struggle is often minimized or overlooked. I’ll be the first to admit, I don’t look sick, not one bit, but that doesn’t mean I’m not suffering.
If you could see it, would you understand my struggle?
I may look like you, but that doesn’t mean I am. I wish people could, for one day, see what they normally can’t. I wish they could see my struggles, just once. I wish just once they could glance below the facade I put up and see what they don’t often see. Not for sympathy, but for understanding. Seeing what they don’t normally see might better explain some of my actions. Since they can’t, I thought I’d inform them of what they don’t see.
You don't see
- You don’t see me stumbling every few steps, as I try to lift my feet and walk, but my foot won’t do what my brain is telling it to do.
- You don’t see that I keep my hand close to the wall as I walk to minimize a potential fall.
- You don’t see that I’m often sitting or leaning against something, because standing can seem impossible at times.
- You don’t see that despite whatever smile I put on my face, or any laugh that bellows from my mouth, that I’m holding back tears, because my legs are in burning pain, like they are on fire, from the inside out.
- You don’t see that my legs are having uncontrollable spasms and that it’s all I can think about at that moment.
- You don’t see that I’m having trouble following a conversation because there are too many other noises in the room and my brain is overwhelmed.
- You don’t see how utterly exhausted I am. So tired, so fatigued, that even lifting my hand seems like an impossible task.
- You don’t see that I didn’t interject my thoughts into the conversation because I couldn’t get the words out.
- You don’t see the planning it took for me to be here, as I obsessed about what the temperature would be like, if I’d be able to sit, and if there would be accessible bathrooms.
- You don’t see how battered I feel. How my bones feel like they’ve been pummeled by sledgehammers and how even my skin somehow hurts.
- You don’t see how I struggled hard with almost cancelling because my body felt so bad.
- You don’t see that my body feels like it’s fallen down a mountain and hit every rock on the way down.
- You don’t see me reaching to feel my legs because they feel soaking wet, even though they’re bone dry.
- You don’t see that my vision just went blurry and I can’t really see you, all because the temperature in the room went up a couple degrees
- You don’t see that my body feels three times it’s actual age.
- You don’t see what happens when I go home and pay the MS Tax, becoming confined to my couch for a few days, all for trying to act “normal”.
- You don’t see the trouble sleeping I had the night before due to “painsomnia”, when my body was in too much pain to fall asleep.
- You don’t see the problems I had getting dressed, first because I became confused and couldn’t figure out what kind of clothes I should wear and then because my hands were numb and I couldn’t work the buttons. You also didn’t see how I had to have someone else tie my shoes for me.
What's really going on
You don’t see any of these things, mostly because I don’t let you. I put on a smile and a brave face and do my best to act normal, to act like I’ve always acted, because that’s all I want, to be normal, to be like I was. I’m usually glad you don’t see these things, but every once and a while, I wish you could. I wish could see that just because someone looks fine, that you never know what’s really happening to them. Always remember, anyone you come across may be fighting a battle against something you don’t see.
Have any of the following helped to reduce your pain? Select all that apply.