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Posted on 15. March 2018

Be Kind

By Rebecca Zook

Be kind to everyone. You never know what people are facing in their lives. If you see someone who is overweight, it may be due to a chronic illness or caused by medications to control one. Personally, I spent the first 40 years of my life weighing 100 pounds. Medications have caused me to gain 35 pounds. I barely eat due to one of my conditions, and three weeks of daily exercise resulted in zero pounds lost.

If you see someone in a handicapped parking spot, and they don’t look handicapped, be kind. Remember that a person can be seriously ill and not look it. Maybe every step that person takes is painful. Maybe they start out OK, but tire quickly. People with chronic illness learn to hide it and learn to appear normal. I don’t look “sick” either. I hear this all the time.

When someone shares they live with chronic illness, support them. Just because you have never heard of it doesn’t mean it isn’t real. I am saddened by all the group posts I read of people whose families believe they are making up their illness and call them lazy or attention-seeking. There are good days and bad days. That’s the most difficult concept to explain. And, when you get up in the morning, you never really know what type of day you are going to face. Living with daily uncertainty is extraordinarily difficult. If you see a post by someone who has chronic illness about having a good day, be happy for them. What you don’t see is the aftermath of that good day: the pain, exhaustion and potential weeks of recovery. It’s hard to not overdo it on a good day. You want to jam in everything you haven’t been able to, and payback is hell.

Rare illnesses add additional complications. You have to become an expert and your own advocate. You are constantly explaining to friends and family what you have, but what many don’t realize is you are also explaining to doctors as well. Most doctors know little or nothing about your condition, let alone how to treat it. You go years, even decades, trying to get a diagnosis. You get to the point that you don’t care what the diagnosis is, even if it’s fatal. You just want to know what is killing you. Then, you cry when you finally know. Not from sadness, but from relief that you weren’t crazy.

By the time you finally have an answer, you’ve likely been diagnosed with anxiety and/or been referred for a psychiatric evaluation more than once. Then, there are the tests, many of which are unpleasant, the waiting and the repeated times nothing is found. You start to doubt yourself. It’s easy to give up searching and give up hope. The costs of treatments that allow you a decent quality of life and, in some cases, allow you to live, are devastating. Often, you are in an ongoing battle with the insurance company to get them at all.

The rare disease-diagnosis road is not for the fainthearted. Anyone who has traveled it or lives with any kind of chronic illness is far stronger than you can imagine. We call ourselves zebra-warriors. In reality, we aren’t braver than anyone else; we are fighting because we have no choice. We are fighting an endless, unwinnable battle because the alternative is unthinkable. We have no cure and no end point. We walk side by side with our diagnoses and have to make peace with them.

So, remember, be kind.


Comments (3) -

7:20 AM on Friday, March 16, 2018

Thank you for finding the perfect words to describe the discouragement, mental and social fatigue and unpredictability that accompany chronic illness. And most importantly, for reminding all of us to follow the Golden Rule. I enjoy the mag and the blogs so much!!!

Nancy Weems
7:47 AM on Friday, March 16, 2018

Rebecca Zook, your article on Be Kind could have been written by me. It was like every word you said came from my thought pattern. I have a rare neurological disorders and I do use a handicap parking spot with stares coming from people of all ages. Thank you for putting into words what my head and heart thinks!

M.A. P.
8:26 AM on Friday, March 16, 2018

Wow!  Spoken like a warrior on the battlefront.  You perfectly conveyed what we experience.  I really connected with "You go years, even decades, trying to get a diagnosis. You get to the point that you don’t care what the diagnosis is, even if it’s fatal. You just want to know what is killing you."  

Thank you for a great article, and the reminder that we are not suffering alone.

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