Please Just Ask (Questions to ask a friend with a Chronic Illness)

June 07, 2016

Another image of friends out socializing pops up as I log onto social media. Longing fills my soul. It has moved way beyond FOMO. I no longer have that fear I am missing out. There is no doubt about it. I have long accepted it. I am missing out.
I’m four years into a disease (chronic fatigue syndrome/myalgic encephalomyelitis) that has taken so much from my life and I no longer anticipate the invites. At times, I no longer expect to be thought of or considered to be much more than my disease. My life has been categorized and contained. I am the friend/colleague/family member with the chronic illness. The stereotypical view of my life as it now exists has been formed, and that is the view that remains day in and day out.
Yet, my life with a chronic illness is nowhere near stereotypical. My capacities and my abilities vary day to day, month to month, and year to year. What you saw of me while I was trying to maintain a job and live independently is a completely different me than what you may see now. Last month I struggled with balancing life amidst welfare agency work expectations, the month before was spent fine-tuning a new medication that made me sleepy all the time, this month it is a working on increasing my exercise, while trying to figure out why I have this random abdominal pain. Each month has looked completely different. Each month there is a new set of challenges, a new set of symptoms or a new set of physical, emotional and cognitive capabilities.
What I couldn’t do three years ago, I can do now. What I struggled with last week is now a different battle this week. What you saw in a bad month or a day isn’t the whole story.
Continue reading this on The Mighty.

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