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
I recently reduced my work hours (I work from home, have Addison's,etc) because I couldn't handle full time anymore. Somebody told me today they wished they could do that...I thought no, you don't want to be so sick & exhausted you just can't function normally anymore.
I've also had a stubborn infection in my foot that I've had to have IV antibiotics for and now today they took a biopsy of it to see why it's still there. Infections are just plain scary...and balancing steroids,etc.
Anyway just wanted to let you know I know how crazy this whole thing gets and how most people really don't get it & I will pray for you.
Hi, Deb. Thank you so much for posting this today. I'm so sorry for all your health issues, and definitely know what you mean about trying to balance steroids with other illnesses. My biggie is asthma. I just went to Urgent Care and then the ER for that today, and I now have antibiotics for possible bronchitis, but am putting off taking them because of the whole steroid issues, or what if I have a major reaction, like I often do, or...or... It's nice to hear somebody out there understands! I hope they are able to find something else to really help your infection, and then I hope all the steroid tapering is not too long after you're better. We really do lead adventurous lives, but not the kinds of adventures anyone wants to go on!Delete
Great letter! I plan to link to it off my chronic pain blog website next week, in my Featured Blog Post spot. Living with chronic illness/pain is a real struggle but it's even harder when people say stupid things. We just have to waltz over the b.s. and keep living the best we can. Right now I'm working on my "30 Things Meme" for Invisible Illness Awareness Week and it's really bringing up a lot of that right now.
I wish you good luck in all your medical issues. Being sick is not for wussies!
Nip Pain in the Bud & Let Your Soul Blossom
Kimberly, Thank you. I've just discovered your presence and your work tonight. You have accomplished a great deal, ill and/or well ... Bless you for your sturdy spirit!ReplyDelete
My situation parallels yours in many ways ... There are so many of us in the world ... I sometimes think that in simplest terms, humanity's poisoning of the planet and its sustaining systems is showing up as the many chronic and corrosive diseases that can emerge in a body. The unrelenting chronicity itself is a symptom ...
"Taking it easy" -- !! Not so! I once heard, from an old friend who had survived cancer, "Must be nice to be living off the government, eh?" Knockout punch. It is not "nice" to wonder every month if my sole source of income (therefore a home, warmth, and food) might be cut away for some bureaucratic reason ... Poverty and long illness are not a "nice" combination.
As to the question of work ... If someone asks me now, "Are you working?", I say "Yes" and share my evolving understanding of what work is. If someone asks, "What do you do?", I tell them in simple, concrete terms. More than once, another person has persisted: "No, I mean, What job do you do?" I play (as patiently as possible) the 'broken record' ... Understanding comes slowly, if at all ... It is a choice to understand, to make the effort to understand. Underneath the effort is our common humanity; that's what I go for in my interactions --
I've been away from the "gainful working world" for nearly six years now, am in my mid-50s, and desperately miss being useful in the world. Your example is one that inspires me to make some definite contribution via good thinking and writing. Thank you so much for being who you choose to be in the face of enormous challenge!