The Adequation Complex

“One of the most important things to someone with a chronic illness is to be treated as an equal. Having MS does not make me any different than someone who does not.”

This was something I used to tell myself every single day since my diagnosis—it got me through the hard times and inspired me to live my highest quality of life. But as I get older and the 4 year anniversary of my diagnosis approaches, I find myself questioning if this is really the case.

While I want to believe that my MS does not make me different than anyone else, the reality is, I am different. On days where my symptoms are particularly trying, I’m reminded that I’m living with a condition that is completely out of my control—it just happened. Sometimes I need to use a cane because my legs are weak, or I can’t drive because my eyes can barely focus.

I am absolutely different; but being different is not necessarily bad.

I strive to empower those like me to step out of their comfort zone and push themselves to their limits to achieve amazing things. But I also want to emphasize that there will be days where things seem nearly impossible because of your limitations… and that’s okay.

It’s okay to take a step back when times are a struggle; it’s okay to rest when needed, in fact, it’s necessary. So, while we may want to feel like we aren’t any different than those who don’t have MS—we are. And that’s perfectly fine!

There is a fine line between wanting to be treated as an equal, and the need for people to understand when I’m having a hard day. I never want someone to look at me when I’m experiencing more noticeable symptoms and say, “What’s wrong with you?” I also crave understanding when I truly can’t do something simple—say, like unscrew the top of my water bottle.

In the end, the best thing the rest of the world can do for us who live with MS is to just understand.

Understand that I was running half marathons last week and can barely move my legs today.

Understand that I work just as hard as you do and do not want any special privileges just because I am “sick.” Understand that I am just like you, but the frosting on my cupcake was piped just a little bit awkwardly.
Tags Healthy Living      8 Appreciate this
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Catherine

Catherine Weston

Catherine is a professional in the medical marketing industry from Long Island, NY. She aspires to show the world that MS doesn't hold her back. She was diagnosed in 2014 and has been striving to help others overcome their fears and limitations since (she also loves sheep!). Keep up with Catherine and her adventures in wellness through her blog!

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    9 Comments

  • Sharon Lee McNeiley   Aug 9, 2018 12:55 PM
    The Adequation Complex was very uplifting and so very true. My MS started in 2000 and my diagnosis was in 2006. By 2007 I was in a wheelchair. Going from using carts at Wal-Mart to a cane, quad cane, and walker to the use of a powered wheelchair. Interestingly for just over eight years my right leg didn't move at all and 4 years ago my left leg stopped also. But, I push forward always trying to get more and more physical therapy. Pins in legs and toes didn't even make them wiggle. Then three months ago everything changed. As I was able to increase my slideboard usage all of a sudden I was able to wiggle my toes, my foot etc. My point, I may or may not get a wiggle or lift from them, I never give up! I just push forward and I join with you when someone says whats wrong, I just may need a day or two of rest. I always try but sometimes I know my limitations and just need a break. A short time ago I had a caregiver walk out and then stated "I don't know how you get away with doing nothing at times". Glad she left, as it taught me how little she understood the disease. Hats off too you for a great blog! Move as much as you can and rest every time you know "the disease" says you need to take a break!! Hugs to you, Sharon
  • hope2015  Aug 10, 2018 7:38 AM
    Nicely said! Understanding...on all fronts is constant and always changing. Maybe next one can be on... patience. lol.....You and others write some really terrific posts..thank you all..didn't know about this blog (or remember)..
  • Jay Qureshi   Aug 20, 2018 5:45 PM
    we must resign our expectations of the world, and take it "one day at a time"~ like I was a Mechanical Engineer and Designer, then asked not to work and brought back to the Bay Area, the wife is the Main person for commercial tile sales at the tileshop, Berkeley, at least I have her for weekends but do OIL paintings now see my work at deviantart.com am happy-2-day there~ and that is one reason to continue to reach my goal of making 1000 paintings and then unleashing my exercise-buggy~ no gas, drive down the entire beach~ so for your diagnosis, can say look up, where God supposedly resides and be grateful that you can still share what you can with this crazy world~ I know MS is a terminal condition...but what you still have to work with is the key to success here~ have watched MS friends get worse and worse and all I can say now is take the time to enjoy and do not leave that to someone else~ (unless you wanna)~
  • shellymae37  Aug 26, 2018 5:23 AM
    Hi. my name is michelle, but since my diagnosis, only a few weeks ago, i have been introducing myself as Harley. i guess i figure if the universe can reinvente my whole Existence at a whim for no reason, so can i. besides, if im going to have to figure out how to make this sexy Helen Keller thing work, a name more fitting to my actual personality might help.
    i do realize how in the grandscheme of things, this seems utterly unimportant, but right now im grasping at straws to make any of this bearable . I want to be me again. any advice at all from anyone more versed would be gravely welcomed.
  • Avatar
    Larry-T  Sep 15, 2018 5:01 PM
    Thanks for the post, I have been diagnosed with progressive MS in 2016 I am currently loaded with fears and difficulties I was a Manufacturing Engineer and I struggled with thinking through processes that I have done repeatedly for may years.I am trying to get through it this week is tougher than most days.
  • Lisa Boado   Sep 16, 2018 9:45 AM
    This is a beautifully written true to life piece...I felt as if the words were my own. awesome & amazing to know that I am not alone, we all want to be recognized as “normal” because being special ain’t always so great 😒
    I was diagnosed in 2011😞 still feeling like I was given a life sentence that stole away my life 😪
  • Jayster   Sep 17, 2018 7:45 PM
    you must accept how in the hell to make it happen, obviously sitting in front of your computer, you may start there, and explore the options available for your own interest, have tried a few times, unsuccessfully, so I paint now, want to make 1000 paintings am at 401 now at deviantart.com am happy-2-day there search that there~
  • Jay Qureshi   Sep 17, 2018 7:51 PM
    as a technical man, learned autocad and ansi-y14.5 drafting standard, and have designed "the recaptor" fuel-less exercise vehicle, but my wife says that It is going to get me in trouble, the notion of getting exercise and driving up the beach and saving the power from braking and accelerating into tanks full of nitrogen (actually one is vacuum, the other pressure) a closed system where contaminants cannot get thru~ had a parts list fewer than 50 commercial parts~tractor seat, bimba cylinders, block bearings, steel shaft, aluminum cutouts (feet hippy shaped)~ numatics switching block with one-way check balls throttle is pull to accelerate push to brake~legs are like filling your tires each leg and arm~
  • Marcia   Sep 19, 2018 2:51 PM
    Very well said. . thinking the same.