When I Tell People What Chronic Illness Is Like and They Ask, 'How Do You Do It?'


Recently, I was asked by my coworker how I was doing. I used my usual line: “I’m OK…” With my fake smile and quickly turning away, I can usually pass by without going in depth about how awful I really feel that day. She stopped me mid-step and said, “No, how are you feeling today?” I told her I’m hurting and then I paused and told her how I really felt. “Have you ever had the flu? I feel the body aches and fever. All day. Every day.” The look she gave me was mortifying and quite embarrassing.

I hate using that analogy, but it is the only way I feel like I can relate to other people about my pain. It is constant other than when the pain meds actually work or on some miraculous days when I feel good, which are very few and far between. Her next question was the hardest to answer and I still don’t really know the answer to it. “Wow, I don’t know if I could ever go through that. How do you work and raise a family? How do you do it?”

Honestly, I don’t really know. I really don’t have a solid answer I give to anyone. I noticed I kind of run around the answer every time. I either say I have no choice or I do it for my family. But how do I really do it?

I cry a lot. I know that sounds weird or strange. When I lost my father, I had an extremely hard time grieving. I held it all in and acted like I was OK until I absolutely melted. So when I was diagnosed, I cried. I cried more and more. I cried a lot. I have learned that if I hold it in, I would never learn to grieve the “old” me. I would never learn to accept my new life.

I lie a lot. I lie about the way I feel on a daily basis. I don’t tell anyone I feel bad most of the time if they ask, although I might be writhing in pain. I tell people I’m OK if they ask, “Do you need a break?” I mask my limping and I try not to wince when I feel a sudden pain. I lie day in and day out so people do not see my pain.

I rest a lot. Just as I am sitting here writing this, I have a heating pad on my back, feet up and all of my necessities within arm’s reach. As soon as I wake up, I rest. As soon as I get home from work, I rest till bed. If I don’t, I eventually put myself into an intense flare, and I have been there so many times because of me being negligent to my rest.

I ask a lot. Over time I have learned to ask for help. From lifting at work to tasks at home, I have learned to ask for help so I don’t overdo it. I have been stupid enough in the past to lift large objects and really hurt myself for weeks afterward.

I accept a lot. I have learned to accept this is the way it is going to be for the rest of my life. I will never be the same, feel the same or move the same. I will have to be cautious, be guarded and keep myself from getting hurt on a daily basis. I will be able to live, work and be me. Just a limited me.

So in a short answer to my coworker, I shrug and say, “I just do it.” I wink, smile and take care of the next customer. I keep going, I keep being me. Just a limited me.

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Thinkstock photo via stevanovicigor.

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