Saturday, February 18, 2006

"Why Can't I Make People Understand?"

Millions and millions of Americans suffer from some form of chronic illness. You may have one. Infertility, Chronic Back Pain, Diabetes, Arthritis, Migraines, FMS, Lupus, Clinical Depression...these are just a few. If you are one of the chronically ill you have probably had at least one experience where someone suggested that your predicament was your own fault.

Why has every one of us had this experience? Because it is human nature. By pretending that chronic illnesses come to those who deserve them (sinners, smokers, drinkers, the physically unfit, etc.) or can be healed if people just do what they are supposed to do (pray more, eat right, exercise) a healthy person can maintain the illusion that they will never be in the same unhappy predicament. It has the added appeal of minimizing the need for a compassionate personal response.

Because this is a matter of human nature and not mere ignorance it is a problem that is never going to go away. So how should we respond? Lisa Copen has some tips that I have found very useful in her excellent article, Why Can't I Make People Understand?


Lauren said...

I think it is not so much that people are not being compassionate but maybe they just don't want to hear about it. There are people who just don't shut up about any ailment, big or small, and sometimes people need to make those "insesnitive" suggestions as a polite way of trying to shut that whiner up. The situation that comes to mind for me is this one friend of my sister, Meg. This girl is just awful. Sure, she has had back problems but we all know abotu it so it gets to a point where you just want to give her a good smack and say "shut up. we get it. you've got issues. so does everyone else. I/we don't want to hear about yours anymore." This girl... anytime the conversation is focused for more than a moment on someone besides herself, she lets out a moan so that the attention will revert back to her. Maybe it is those people that "ruin" chronic illnesses for the rest of those suffering... I don't know. I just know that with this girl, I have no more patience. Sure, I feel for her but I think there is a point where being ill crosses with wanting attention and that is just not cool. Oh, also, just as a note, you cannot deny that there are some people that fake illness or just make/keep themselves ill so that they can continue to get this attention. Its in the DSM.

So, we're not all discompassionate. It may be that many people, like myself, just don't want to hear it anymore from certain people, like my sister's friend (if you met her, you'd understand).

Kim Traynor said...

Lauren, thanks for sharing your perspecive. If you'd like you can forward the article to Meg for her friend.

You bring up a great point about fakers. How do we tell if our family member or friend is faking it? One easy way is to ask if they have been diagnosed by a doctor. Doctors know more about disorders like Muchausen Syndrome and Hypochondria than you and I, and they will not make a dignosis if the patient doesn't meet the diagnostic criteria. My general rule of thumb is that if someone has been diagnosed with an illness, even if I don't understand the illness or their behavior, I give them the benefit of the doubt.

Kim Traynor said...

I just realized that my last comment might give the wrong impression! For the record, I don't believe that we ought to doubt the honesty or mental health of those who are still waiting on a definitive diagnosis. I only meant to point out that a diagnosis by a doctor is convincing corroborative evidence that the illness is not faked.

Steph Stanger said...

I think the burden falls more on those of us who are healthy to be the compassionate ones then it does on those who are ill to be compassionate by not boring or annoying us with their complaints.

I will admit that before I had Malachy via a nasty c-section I had never experienced pain and I was not mature enough to be compassionate to those who deal with it daily because I was simply ignorant. I hope this is an area that I'm growing in. I read the article and found it helpful to people on both sides of this topic. Thanks Kim

As far as the "fakers" go...the truth of the matter is we really don't know what they are experiencing so it's best to give them the benifit of the doubt. (That is after all what we expect from others)

Lauren said...

Those are good points (and by the way, Kim, I didn't get a wrong impression fro mthe first comment but thanks for clarifying your intended thought).

For me, I think it is not so much a problem believing the could-be-fakers. I tend to be very trusting until I have reason to think otherwise. Like, if you were to come up to me tomorrow and tell me you won the lottery I would totally believe you 100%. About 6 months down the road when none of the winnings had become obvious, that is when I'd start to think something was awry. (that could have been the worst analogy of all-time, but I think you get where I was going).

The difficulty I think I have is not compassion or understanding for those people but rather patience. (I have all the patience in the world for kids, no holds barred.)
I suppose it is like anything else, people talk about what is most important in their life, be it school, work/career, volunteer ops., God, family, etc. And I suppose that some people rank a disease or ailment at the top of their importance list too. It's just strange territory for me, maybe. (This is a little self-psychology here, sorry) Perhaps my beef with it could be that I have these built in guidelines for what is appropriate for myself to discuss and I unconsciously expect others to follow the same rules.
(Maybe? I don't know.)

good topic though.

Kim Traynor said...

Thanks Lauren, I appreciate that you would even bother to enter into the discussion! When I first posted I thought the only people who would find the post interesting were people with a chronic illness, so it was great having a different point of view represented. And, as always, your honesty is really refreshing.

LisaC said...

Thanks so much for your post and reference to my article about "why can't people understand" [my chronic illness?] In regard to the comments of fellow bloggers, I agree whole-heartedly. Our society is made up of people who have many different personalities and ways of coping with difficulties in life. Some people will conquer anything with an attitude of "I can beat this!" while others will always choose to be the victim. Illness enters the life of every kind of person, so those with illness will be a cross-selection of the population too. It will represent those who are pretty-much emotionally healthy and just need a friend to SOMEHOW validate that they at least understand a small part of their daily challenges. But it will also represent those who will grab onto this illness as the newest [and perhaps most legitimate] reason to play "victim," using their illness to gain more attention.

Overall, I think there are very few people who actually "make up" an illness. 1 in 3 people in the USA have a chronic condition, such as pain from an auto accident, diabetes, migraines, arthritis, etc. And we can't ever REALLY know just how much pain someone is in. If it is painful to them and impacting their life, IT'S PAIN. Every time I have a rheumatoid arthritis flare that leaves me barely able to stand, it's amazing how wonderful those days of just limping now seem to be. Our scales of pain change every day, so it's best to just assume everyone really IS in pain.

But, I wrote the book "Why Can't I Make People Understand? Discovering the Validation Those with Chronic Illness Seek & Why" because I saw so many people living in a state of pure frustration that the world just "didn't get it." -- even their closest friends and spouses who generally care. I've attempted to teach people that those of us with illness CAN'T change those around us, or "make them get it." It's just not possible, like we can't understand divorce or the loss of a child if we haven't actually experienced it. We can adjust our own actions and attitudes, however. And for friends who want to help... I wrote "Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend" to try to give our chronically ill friends some resources/tools to better understand how they can reach out when they want to. Most people care but feel very ill-equipped at what to say, how to help and so they may do very little. Lack of caring is rarely the problem, but rather, a lack of communication between healthy and ill friends.

While writing "Why Can't I Make People Understand?" I realized that this question is asked by everyone on earth over whatever their plight is at the moment. We have a human instinct to need to have what we are feeling validated somehow and yet, even when it is, we still think, "But she doesn't REALLY understand! My situation is so much worse because [fill in the blank.]"

This can be a normal emotion, but also a destructive one if we allow it to become a common thought pattern. If anyone is interested, both books are available at

God bless, and thank you for bringing this topic to light. Who would have thought I could explain my thoughts at 2 a.m. so well! I can't sleep from pain :)

Lisa Copen
Rest Ministries

Kim Traynor said...

Hi Lisa, welcome to my blog! I hope you slept better last night. I love your thoughts on this and I think I'll post them on the blog so that everyone can enjoy your insights. Take care, Kim