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

What Does Sick Look Like?

Written by Katie. Posted in Editorials, Favorites

This post is not meant to offend anyone.  But it is something that I constantly experience on a day to day basis.  I know in my heart people mean well.  And that they want to pay me a compliment.  But I also feel that at times people are trying to make sense of it all when I am told,  “But you don’t look sick.”  “But you look so great.”  “I’ve never seen you look better.” “But you look so beautiful.”
It has forced me to ask myself, in society’s view, what does sick look like?  Does one have to have sunken eyes, pale skin, and look close to death to be considered sick?  Because I have lost weight (unintentionally), still wear make up, and do my hair each day, does that make me healthy to outsiders?  In all fairness, 6 months ago, if I were able to step out of myself and look at me with outsider eyes, I would have made the same comments.  But yet another life lesson I have learned is that no matter how great someone appears on the outside, you never know what they may be going through; illness, loss, pain…  


Throughout this ordeal, I have struggled with how to respond and explain to people, that even though I may look “normal” I still have an illness that is keeping me from functioning normally.  The terms “invisible illness” has taken on so much more meaning now that I am living it.  Some days I respond to “but you don’t look sick,” with a simple “thank you.” Other times I say, “Well I wish I felt as good as I look.”
What people don’t know is that although my hair and makeup may be done, and although I may look put together like my normal, “healthy” self, the process of getting ready for the day now requires many rest breaks, many checks of my heart rate, many periods of lying down, and basically 10 times the energy that it used to take to make myself look presentable.  Or that after I take a shower, I usually need a good 30 minutes to recover by laying down with my legs up so the blood that has pooled in my legs can return back up to my brain, to help make my headaches and nauseousness go away.  Or that when I do truly look sick, I am usually not out in public where people can see the “sickly” me.


Through these last six months, I have found that my days require a lot of conscious decision making and prioritizing as to what needs to be done.  When I wake up in the morning I have to assess the day.  If I have a doctor’s appointment in the afternoon, I know I have to really pace myself in the morning with normal activities-making breakfast, showering, doing my exercises so that I am not too sick by the afternoon.  If cleaning the house is a goal for that day, I have to pick what needs to be done the most.  If I choose dusting, I often have to leave vacuuming for the next day.  My life has changed a lot in terms of day to day happenings.  What I used to take for granted now constantly requires conscious attention and decision making, as to if I will be able to make it through without getting too sick to ruin the rest of the day.  It is a definite balancing act. 


I explain this, not for sympathy, but because I cannot fault people for not understanding me and what I’m going through, if I do not try and explain it.  Because of this invisible illness, I have been forced to cancel many plans the last months because of sickness.  I appreciate all of you who have been understanding and patient with me when this happens.  Hopefully as I continue to move forward, the “simple” things I used to do will get easier again. 


There is something called the spoon theory that many people use to describe to their loved ones what life is like with an invisible illness.  A lot of the spoon theory is so applicable to my life at this time.  The Spoon Theory was written by Christine Miserandino who has Lupus, an autoimmune connective tissue disease.  My hope is that by reading this, people will have a better understanding of what a typical day is like for me.


Because the spoon theory is copyrighted, I am not sure if I can legally copy and paste it on my blog.  But I will post the link, and encourage you all to read it; not just for me, but because there are so many other people out there who are also living with various invisible illnesses.


 http://www.butyoudontlooksick.com/wpress/wp-content/uploads/2010/02/BYDLS-TheSpoonTheory.pdf  

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Comments (1)

  • Meghan

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    >Love you, love you!!! This brought tears to my eyes…and a better understanding of all you go through. Thank you! Love you, love you!!!

    Reply

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