Surviving Chronic illness; The Difference Between Denial & Courage

If you told me five years ago that I’d be wearing flat shoes, I would have laughed.  The thought of giving up high heels seemed unimaginable.  Then again the thought of getting diagnosed with a 1 in 100,000 disease I’d never heard of was also unimaginable.  (I already had Bipolar Disorder and Polycystic Ovarian Syndrome.  My proverbial plate was full.)   This neuromuscular autoimmune disease, Myasthenia Gravis (MG), has rearranged my life.  After getting MG, I initially refused to make changes, like giving up heels, because I thought changing meant the disease had won.  Later I learned the difference between denial and courage.

Becoming A Chair

After getting MG, I had trouble bending down to reach drawers or lifting my arms to reach shelves.  Everything suddenly felt too high or too low.  For years, (before I took Reliv), I had to sleep at a 90° angle every night because of my compromised lungs.  I had to become a human chair just to breathe!

Wash. Rinse. Repeat.
Wash. Rinse. Repeat.

I was caught in an endless cycle:  Step 1—prop pillows to support my back.  Step 2—fall out of bed.  Step 3—put CPAP (sleep apnea) mask back on.  Step 4—get back into bed.  Wash.  Rinse.  Repeat.  Friends would ask me if I was going to change my furniture.  Three years into MG, I kept saying, “It might be a waste of money.  I could get better tomorrow, you know.  It could happen.”  But four years into MG, I realized:  There might never be a cure.  So I got rid of things like cabinets with drawers.  And I bought a bed that allowed me to sleep at a 90° angle.  I finally got some rest!

I also gave up high heels.  To give you an idea of how difficult that was:  For ten years, I wore heels everyday even at home.  I actually had stilettos that matched my pajamas that I called my “house high heels.”  So what’s the difference between denial and courage?

Denial Is…

  1. Maintaining uncomfortable patterns:  Refusing to change my furniture was not being brave; it was being stubborn.
  2. Keeping painful traditions:  Almost all the parts of my body, from my back to my toes and fingers, hurt.  But in 2009, a few weeks after getting a thymectomy (my neck was cut open and glued back together after my thymus was removed), I attended a bridal shower in heels.  (What was I thinking?)  After seeing my heels, the host proclaimed, “She’s back.  The real Jessica is back!”   That was not helpful.   If you know someone ill, instead of focusing on appearance, focus on how he or she is feeling.  Oftentimes it helps me when a friend just listens.
  3. Refusing to accept any changes:  I’m not saying that we should give up the hope of ever getting better.  I am suggesting that in the meantime we adapt to our current reality.  My breathing is better now and I no longer have to act like a chair but having my special bed did make life easier for a season in my life.  In the past, I also adapted to depression.  In college, I took three classes a quarter (instead of the regular load of four) until I had bipolar disorder under control.  I ended up graduating on time with two majors.

Courage Is…

  1. Realizing that you are more than the sum of your abilities, hobbies, and looks:  I know now that the real me exists even though I no longer cook gourmet meals or wear high heels.  The real me is a person of faith with a will of steel who loves family, friends, and helping people.
  2. Finding new ways of being:  Before MG, I did yoga five days a week.   After MG, I could no longer do yoga.  So I googled “exercises for sick people” and stumbled upon Pilates.  I’ve been doing Mari Winsor DVDs for four years.  And I look forward to it everyday.  I’ve also discovered that stylish flat shoes and wedges do exist!
  3. Living at your own pace:  Sometimes loved ones can unintentionally pressure us.  Once in a while someone will insinuate that MG isn’t that bad because so-and-so’s cousin’s wife’s grandfather lived to be 93 and swam seven laps a day.  Good for him!  I’ve got my own situation and I have to live life at my pace.

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–Your Stylist, Jessica Gimeno

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JessicaGimeno

Hi, I have five illnesses--bipolar disorder, myasthenia gravis (neuromuscular autoimmune disease), polycystic ovarian syndrome, asthma, and psoriasis. Most of the organs in my body are affected. I'm dedicated to being a stylist for sick women. As someone who has experienced changes in my appearance due to my 12 meds (including Prednisone), I know how hard it can be when your face and body change overnight. (In fact, because of treatment, between 2008 to 2010, I went from a size 0 to a size 10. While I lost the weight, there are permanent changes in my face and body, which I've grown to appreciate.) My blog will also help women deal with other issues like surviving chronic pain and fatigue. Healthy people can also use this blog as a window into what life with illness is like. Let this website be a place where we can draw strength from each other despite our illnesses and find solutions to our everyday challenges!

2 thoughts on “Surviving Chronic illness; The Difference Between Denial & Courage

  • June 12, 2015 at 10:29 pm
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    Great post, Jessica. Not only are denial and courage different, but to be courageous, we must accept and face reality. Acceptance is so important.

    Reply
  • June 13, 2015 at 2:06 am
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    Loved Reading this as I’m currently working on my denial with a pain psychologist.
    Thank you, hope you keep well. I just have to find the real me…

    Reply

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