A Letter to Those who think Chronic Illness means Taking It Easy

Lots of people look at the newly retired with envy. "You are so lucky to be retired," they say. "You get to stop working, travel, do the things you never had time to before. Wow. I wish I was in your place."

However, I've never heard anyone stand in the door of a nursing home and tell an elderly person, "You're so lucky to be old. You don't have to cook anymore, or clean, or even bathe yourself. You get to lie around all day and don't have to go to work. I wish I was in your place."

If hearing about it, the two situations might sound similar. However, those of us who have been close to people who are elderly know they hate being dependent on others for everything--especially when those others might forget or complain--they miss work and the interaction with people, and they're sick of lying around all day feeling useless.

If the above is understandable, I would like to respectfully request you stop assuming people who live with chronic illness are lucky. Those benefits you see come with costs, such as:

"You don't have to get up and go to work."
Some days we long to be working again, to be around people, to do something that is filled with purpose. Our job has become living with illness and all that takes.

"You get to lay around all day."
Some days pain keeps us in bed. Some days symptoms are so bad we cannot connect with the rest of the world. It's not a vacation. It can be a very lonely place.

"You get to say no to whatever activities you don't feel like doing."
There are so many activities we miss. Like hiking. Or going to an amusement park with our kids. Or even the park down the road.

"You get to avoid all the hard work at family gatherings or big events."
Vacations and family gatherings are a huge struggle. Just showing up sometimes takes days of preparation, extra medication, and enduring painful consequences later. We sit down while you stand, but feel embarrassed about it. We watch others serve, and feel guilty. We want to be involved, and hate being stuck on the sidelines.

"Your life is so easy."
Medication on an exact schedule. Food we can't eat; food we must eat, again, on a schedule. Medicines we can't take because they interfere with certain conditions or other meds. Doctor's appointments, people thinking we're faking it, having to explain our limitations over and again when we hate admitting them at all. Scary test results, hospitals, lots of needles, and hearing, "We don't know what's wrong."

After one hospital stay.

It would help so very much if you would understand. We're not asking to be babied. (It is true that some people milk illness for all it's worth, but please don't think we're all that way. Most of the people I know with chronic illness would give just about anything to be better, and they often downplay symptoms or pretend not to be in pain because they don't want to draw attention.)

Remember that retired person and the nursing home person? Can you imagine how it would feel if a person in a nursing home was told, "You're so lucky. You have it so easy." when they feel their lives have been taken away? When you look at us like we're the ones getting to do all the things you wish you could do, it hurts. Our lives aren't one big vacation. In fact, we don't ever get a vacation from illness. It is there every day, every hour. We don't get weekends or days off or, ironically, sick days.

I'm not griping or saying everybody thinks we're a bunch of lazy bums. Most people are understanding and kind, and to you, I say thanks. For the others, even if you are pretending to joke about it, we feel the pricks. Please get close enough to us, ask about what a normal day for us is really like, and seek to know the truth. We would love to have you stop envying us and pray for us instead.

With appreciation that you took the time to read this,
One of the over 133 million Americans who are Chronically Ill


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My Name is Kimberly, and I Have Addison's Disease