Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

The Bright Side of Chronic Illness

Written by Katie. Posted in Editorials, Favorites, Positivity

Dr. Rosen asked me at my last appointment if I wished I was never diagnosed with EDS.  I was already emotional and actually got kind of angry at his question.  Without any hesitation, I snapped back that of course I wish I didn’t have EDS. 

After I left my appointment that day, it was as if Dr. Rosen’s question was haunting me.  I could not get it off of my mind.  I realized as I thought more and more about it that the answer to that question is not as black and white as I thought it was at the time.  I took that question with me to therapy.  I took it with me to Georgia.  I sent my Aunt Mada a Facebook message about it to see what her perspective was since she lives a full and active life with MS.  And then I thought about it some more. 

If I am going to be brutally honest, EDS is not a fun disease to have.  It can be relentless and unpredictable, and at this time, there is no such thing as a remission or a cure.  It is always there, reminding me that I have limits and that the life that I once knew has changed.  But if I am going to continue to be brutally honest, then I must also acknowledge that many beautiful gifts have come from having both EDS and POTS.  As I have progressed through the emotional side of accepting POTS and EDS throughout the last seven months, these blessings have become clearer and clearer.

On the airplane coming home from Georgia, I decided that it would be good for me to focus on these blessings, so I made a list.  Therefore, the following is what I believe to be the positive side of having two chronic illnesses…

1. You do not have the time or the energy to waste on stupid stuff or drama anymore.

2. Priorities become vividly clear.

3. Working towards goals become your way of life, which makes life more fulfilling.

4. Advocating for yourself becomes second nature.

5. You really start to pay attention to, and appreciate, good news and success stories.

6. You don’t have to guess what the genuine, true relationships in your life are. You just know.

7. You develop an empathy that is hard to have unless you’ve been in a similar place. You become less judgemental and more compassionate.

8. Your vocabulary increases tenfold.

9. You realize that faith really is a huge player in life.

10. The little things in life don’t seem so little anymore. The big things in life become a whole lot bigger.

Aunt Mada suggested this classic Monty Python song and I thought it was perfect.

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Comments (5)

  • Aunt Laurie


    >Katie, I was just thinking of you while I was listening to Crowded House's CD Temple of Low Men. There is a song on the CD called "Love this Life" and it usually gets me through the rough days. Your blog post today makes it even more apropos, I think.

    Love this life
    Don't wait till the next one comes
    Gonna pedal my faith
    The wheels are still turning round turn round
    Maybe the day will come
    When you'll never have to feel no pain
    After all my complaining gonna love this life

    As always, you inspire me my beautiful sparkly girl!


  • Katie


    >I love it Aunt Laurie! I am adding it to my set list! Love you!


  • Sara Gooley


    >Happen to read this one on day I really needed it. Again, you are amazing.


  • Wendy Burnett


    Today was the perfect day for me to find this post . . . I’m having one of those days when I’m just sick and tired of dealing with constantly feeling crappy (and scary new pains I can’t afford to have checked,) and I needed the reminder that my illness has given me almost as much as it has taken from me.

    Thank you for the reminder that wherever it takes me from here, there has been more good than bad in my life, and much of that good has come out of being sick.



  • Elizabeth


    Excellent Post! Thank you for “1. You do not have the time or the energy to waste on stupid stuff or drama anymore.”
    So much time in life is wasted on this.


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