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What You Don’t See About Living With Multiple Sclerosis

I don’t know that I would say that I’m grateful for having a chronic illness; that the lessons I have learned from this new perspective on life outweigh the difficulties it has caused. Some are able to do this, where through rose-colored glasses they can manage to still see beauty every day in all of the small things. I admire those people, and some days, definitely not all but some days, I am one of them.

However, no matter how often or for how long I can go without thinking about my illness, at some point it rears its ugly head and reminds me that it’s still here. Lurking in the shadows, waiting for the right time to show up and bring me back to a reality that I don’t like to face. The reality that my body is harming itself, the reality that from the inside out, bits and pieces of my abilities, of me, are being etched away little by little. The reality that one day, some of these abilities that at present I hold so dear will be lost and replaced with therapeutic alternatives to aide me in getting through my day.

You see, we smile. We all smile through illness. We tell you not to feel sorry for us, we don’t want your pity. We tell you we’re OK, we’re doing all right, because we don’t want awkward silence or an in-depth conversation about how things have really honestly been. We smile and we wear our brave “I’m doing fine” faces to mask all of the nonsensical, unfair, depressing and scary pieces of our realities.

No matter how strong the muscles that hold our smiles are, however, there is the ugly side to chronic illness that pulls back at them with brute force. It may go unnoticed by others, but lurks deep within us when we’re briefly reminded of its presence.

For me this is dropping plates, cups, money, my phone, anything I can’t carry with two arms — anything that takes better dexterity in my hands than what I now have. For me this is not being able to bring my children out to play in the snow or extreme heat because multiple sclerosis has taken away my ability to control my body temperature. For me this is extreme fatigue paired with a mountain of unfolded laundry, or losing sensation in my hands, feet, legs and torso. For me, these reminders are when I go to speak but stutter and lose my whole train of thought, and for me, I’m reminded most painfully when these things happen and I’m surrounded by others. Others who don’t know, who couldn’t possibly understand how hard I’m actually trying to just live. Day to day, to just make it through.

Sometimes the most difficult reminders happen when we’re in a sea of loved ones who have no idea what it’s like to watch and wait for the shoe to finally drop, and life to change yet again, or the strength that it takes to exhale, smile, and tell yourself to make the most of what is here now.

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