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Chronic Illness

4 Things People With Chronic Illness Wish Everyone Else Understood

1. Looking good doesn't always mean feeling good.

Key points

  • It’s important to try to educate others about chronic pain and illness even though your efforts may not always have the desired effect.
  • People who are suddenly faced with ongoing health problems are likely to realize how utterly ignorant they’d been about chronic illness.
  • Finding a measure of peace in the midst of feeling misunderstood is an ongoing challenge but is worth the effort.
 Public Domain
Gustave Courbet: "Study for Girls on the Banks of the Seine," 1856
Source: Public Domain

Responding skillfully to the emotional pain of feeling misunderstood is a challenge that the chronically ill face at almost every turn. (Chronic illness includes chronic pain.) That said, in the midst of feeling misunderstood, remaining anger-free is a key to finding peace of mind.

The Buddha said that anger directed at another comes right back at you like fine dust thrown against the wind. This is true for me. That fine dust comes back at me in the form of emotional and physical distress.

To remain anger-free is a challenge. The first step is to notice that you’re angry. The second step is to allow yourself to feel its destructive effect on your body and mind. Just feeling it like this lessens its intensity.

I’ve picked four misconceptions out of many I could discuss. My intention is twofold: to educate people about chronic illness and to help those of us who feel misunderstood realize that we’re not alone.

1. “Looking good” does not necessarily mean “feeling good.”

Looking back on my life before chronic pain and illness became my constant companions, it’s embarrassing to realize how woefully uneducated I was. I assumed that if a person looked good, he or she felt good. How wrong I was. I need only hear someone say to me “but you look fine” to remind me of how ignorant I was.

I remember the IT person at my place of work coming to my office one day to fix my computer. She was young and looked fine but had trouble getting up out of my office chair and appeared to wince in pain. When I asked if she was OK, she replied quickly, “I have fibromyalgia, but I’m fine.” I thought, “I don’t know what that is, but how nice that she’s fine.”

Now I know that it’s highly unlikely that she was fine. She was probably putting on a game face at work. Perhaps she said, “I’m fine” because she was afraid that if she shared with me how much pain she was in, I might (even with the best of intentions) share it with others—even one of the deans—and it could affect her job evaluation… even cost her a promotion.

And what about how we look on social media? The photos we post will show us looking happy (we do have our happy moments, after all). No one wants to see photos of us lying in bed or wincing in pain. It’s a no-win situation for us: Those “happy photos” don’t communicate to others what our life is like, but photos that do are likely not to be well-received.

2. We don’t get days off.

Yes, some days are better than others, but few of us get a symptom-free “day off.” I don't. The relentlessness of symptoms takes its toll, both physically and mentally.

One reason is that most people we encounter (including doctors and other medical practitioners) expect us to get better, even though this is something beyond our control. In fact, we often demand of ourselves that we get better; this is fertile ground for self-blame—that cruelest of emotional reactions. (For more on self-blame, see my piece “Have You Listened to Your Self-Talk Lately?”)

3. “Fatigue” as a symptom is not the same as being tired.

It’s likely that anyone reading this whose chronic illness includes the symptom “fatigue” (as most chronic illnesses do) has been told by someone: “I’m tired too.” But the fatigue of chronic illness cannot be cured by several nights of good sleep.

One infectious disease doctor explained my fatigue in a way that hit the mark. She said it was as if, when I wake up in the morning, no matter how well I’ve slept the night before, my “battery” is only charged 25 percent.

Imagine starting every day with your body only 25 percent restored by sleep. No wonder I can’t visit my son and family who are only about an hour’s drive away. Just the trip there and back uses up that 25 percent. And when they come to visit me, after about an hour and a half of chatting, my battery is down to about 5 percent, so I have to lie down. It used to break my heart, but after 21 ½ years of being like this, I’ve come to accept it and make the best of the life I have.

4. Being home all day is not a dream lifestyle.

When healthy people entertain the "dream" of being home all day, they’re not contemplating being home all day feeling sick and in pain. Put another way, I doubt they’d say, “I wish I could be home all day with pain that no medicine can relieve”; or “I wish I could be home all day with such debilitating fatigue that I can’t concentrate on anything.”

In addition, those of us who are housebound don’t spend our days at leisure. Showering is work. Washing clothes is work. Writing this piece is work. Many people who are housebound by chronic illness are taking care of family members, from toddlers to elderly parents. And, of course, it’s work to stay on top of our medical conditions—keeping abreast of the latest developments, assessing doctors, evaluating treatments, and keeping loved ones informed about how we’re doing.

So, when people say to us, “I wish I could lie around all day and do nothing,” we know they just don’t get it.

***

It’s hard to be at peace when you’re feeling misunderstood. This doesn’t mean you should abandon your efforts to dispel these misconceptions. But, as you do, work on acknowledging without bitterness that you won’t always succeed. Not everyone will understand what your life is like. In fact, not everyone will make the effort to understand.

The more you can meet your disappointments with an even-tempered acceptance, the better you’ll be able to make peace with your life as it is. And that feels good.

This post might be helpful too: “A Not-To-Do List for the Chronically Ill.”

LinkedIn/Facebook image: Hananeko_Studio/Shutterstock

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