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What the People Who Question My Choices Don't Know About Being Sick

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I have chronic fatigue syndrome and fibromyalgia. As a chronically ill person I think a lot about choices. When you are sick there are many choices to make, but they are usually challenging with a lot of limitations. People often ask me why I still work and travel. And every time they ask, I think about choices.

We all have choices to make. Each moment of our lives is a choice. Should I wear this shirt or that shirt? Should I go out to lunch or bring my lunch? Should I buy this car or make it another year in the car I have? Should I keep working at this job or should I advance my career and go somewhere else? When you are chronically ill, there is less enjoyment in making choices and sometimes there is no longer a choice to make.

At this time in my chronic illness journey, I try not to make big choices based on how I am going to feel, but based on whether the choice will bring joy or value to my life. I choose to travel and I choose to work. I get questioned about these choices all the time. What people don’t understand is that I don’t know when my choices will be taken from me. Will it be tomorrow, next year or if I am really lucky, five years from now? I just don’t know. That is how chronic illness works. There is no timeline provided. From what I know now, I will more than likely never have the choice to get better, but I still have the choice to try to enjoy my life.

I have always loved to travel. Short trips, long trips, trips to see places for the first time and trips to old favorites. I love the memories made on these trips and I cherish them. Now a trip means weeks of recovery. When those around me see me get debilitated by sickness after taking a trip they, in their non-sick minds, make the connection that I should stop taking them. And it is a valid connection, but they don’t know what I know.

They don’t live in constant illness and pain, like I do. They don’t think about being sick every second of every day, like I do. They don’t wonder how they are going to get through the next moment, let alone the next day, like I do. They don’t see the darkness that can’t be escaped, like I do. They don’t see how frustrating and scary it is to have so many limitations because of sickness, like I do. The don’t have to give themselves a pep talk just to get out of bed in the morning, like I do. They don’t feel the immense sadness that comes with feeling like you’re in an illness prison, like I do. They don’t have to swallow their screams of pain and suffering, like I do. They don’t cry in their car, in the shower or after everyone has gone to sleep because they are trying to keep the worst of it from the people who love them most, like I do.

Each trip I take is me living my life, if only for a few moments, as a non-sick person. Having a chronic illness like mine does not just affect a person physically it is also incredibly hard mentally. Depression and anxiety are  a common addition to the physical illness. Each time a trip is planned, my spirits are lifted and it gives me something to look forward to. When I stand at the top of the mountain in Colorado with tears streaming down my face because I can’t believe that I have made it back, or I am sitting in Diagon Alley at Universal Studios drinking Butterbeer and smiling from ear to ear because I just rode a roller coaster, I don’t think about the pain and sickness or the medicine that it took to get me there. I don’t think about how my body is going to pay me back and that the revenge will be swift and unbearable. All I am thinking is that for a few precious moments I am free.

skier at top of mountain covered in snow

I make choices every day around my illness. I make small choices, like buying extra swimsuits and pajamas for my kids because it makes it easier for me in case I am having a bad sickness day. I make big choices, like going to work because it helps me mentally. It has become more difficult and challenging to make this choice. There are many days that I wonder if it is the right choice. But for now, I will continue to make it. As I think about all the choices I have to make each to day to accommodate my illness I sometimes feel the answer to the choice is not always clear, but I make the one that is best for me at the time.

No one ever asks me why I make certain choices in regards to being sick. It is always “you should do this” or “you should do that.” If you have a chronically ill person in your life, start asking what choices they have to make and why they are making them. Don’t judge them because they went on vacation last weekend and this weekend they can’t get out of bed. Chronic illness is not a month or a year, it is forever. Think about if you were sick every day for the rest of your life — what choices would you make? Be there for them when they have to make a difficult choice. Remember that they may have to do things differently then you would. Leave the assumptions behind — you don’t have to understand what they are going through to be supportive.

To my fellow people with chronic illness: I know there a lot of choices to make with being sick. I also know that some of the hardest moments in chronic illness are when you are not able to make the choices you want. I encourage you to make some choices that bring joy or value to your life. Even if it is a small choice, like getting a new blanket in your favorite color for when you are sick in bed. If it will make you smile for even a moment, make that choice.

There have been many choices to make as I have navigated through my chronic illness journey. But, the hardest one to make, and the one that makes me the most proud, is that at the end of each day I choose not to give up. If you have a chronic illness, I hope you are making and will continue to make that same choice.

Originally published: August 11, 2016
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