Not Pre-Existing

I can still remember the very last time I called to schedule a blood donation. Donating blood was something I used to do regularly—it was a way I could give back.
 
But, this particular call was the first time I tried to donate after being diagnosed with multiple sclerosis. And that day, I learned a brand new phrase: “permanent deferral.” It’s an odd phrase, really, and full of a harsh finality.
 
In the grand scheme of things, it wasn’t a big deal in and of itself. However, this happened to be the first time I truly felt different after my MS diagnosis. It reminded me that, even on days when I feel fine and people would never guess there’s anything “wrong” with me, I was no longer existing as I once had. Now, I was navigating through life with an unpredictable pre-existing condition.
 
That’s another odd phrase, and one that seems to contradict itself. How can something pre-exist? Don’t things—and people—simply exist?
 
Of course these words are a technical term used primarily for insurance purposes—you’ll often hear it used to describe a condition for which someone has received treatment before enrolling in a new insurance plan.
 
Nationally, it has become a heated, heavy phrase, and in all honesty, I don’t have all the answers. I’m not able to solve the tangled web of problems surrounding the topic of health insurance. But it is frustrating that people can be defined by this “pre-existing” label.
 
Because let me tell you, pre-existing conditions can sneak up on any one of us.
 
Sometimes they surprise you overnight—that’s what happened to me. One night back in 2013, I went to bed perfectly healthy. The next morning I woke up with a numb foot. The symptoms progressed over the course of the next several weeks until I struggled to walk at times. Then, following a series of tests, I received my MS diagnosis—I received my “pre-existing” label.

There’s no crystal ball to gaze into to tell you whether someone you know—or even you—will be diagnosed with a pre-existing condition someday. But here’s the thing: despite any hardships we face, any labels we are stuck with, all of us just want to live our best life possible. All of us want to have access to the best treatment and care possible—and receive the respect and compassion everyone deserves.
 
My life might not look exactly as it used to. I might not be able to do all the things I once could. But I am thriving with my pre-existing condition—and I plan to continue to do so, with my friends and family by my side. I imagine many people labeled “pre-existing” would say the same.
 
So please, remember the person behind the label. They are more than their pre-existing condition, and they want to thrive, succeed, and enjoy life—just like you.
Tags Diagnosis, Healthy Living      6 Appreciate this
| Reply
Elissa

Elissa Dickey

Elissa Dickey lives in Aberdeen, South Dakota with her husband and children. A former journalist, she is now an author who also works in communications at a university. Her debut novel, The Speed of Light, will be published in winter 2021 by Lake Union Publishing.

Leave a Comment

Thanks for sharing your thoughts with the MSconnection.org community. Please note comments are moderated.

    4 Comments

  • teddickey1  Sep 18, 2018 2:36 PM
    I am some proud of you.
  • Shelley Woelfel   Sep 19, 2018 6:54 AM
    Hi Elisa,

    Prior to my MS diagnosis I proud to be a regular blood donor. I was so disappointed when I went into donate blood only to hear that it would no longer be accepted. I questioned them because MS is not a contagious disease and it made no sense. I even asked to see where it stated that and the exact reason.
    The lady looked at me and said to be honest it actually doesn't spell out MS specifically. It was more about you having a chronic disease or about the medications you took. I did leave upset and I still don't really understand. There's not many people that aren't on some type of system altering medication, so why would this chronic condition be eliminated? I believe she said it wasn't in black & white so they were told to say no. I hope someday they change the decision.
  • Carolyn S   Sep 22, 2018 9:39 AM
    You are telling my story, even though your blog is about pre-existing conditions. Thank you. I thought I was the only one who had this experience. Waking up, unable to tie my shoe that morning because my left hand just wouldn't tie that bow! This happened when I was 53. Prior to that morning I could do most anything physically that I wanted to do. Upon my diagnosis 2 years later, I too had been a regular blood donor. Then had to stop because of the medication, which lowers my immune system. It's been an interesting journey on all levels (physically, mentally, emotionally and spiritually). Thank you again for sharing your experience.
  • Richard Powell   Oct 6, 2018 11:26 PM
    We are different just as anyone else with an incurable disease. We are not being discriminated against for no good reason. They have a very good reason, it is because we have a disease without a known cause. There has been no study done that shows that it can’t be spread through a blood transfusion. The truth is that once we are diagnosed with MS, we can not and should not be treated the same. Our life has changed. Can’t you see why the general public might not want your blood with so little know about our condition and how we got it.