How Much Support Can the Chronically Ill Expect?
Compiled by Darla Isackson

I'm always impressed with the variety of viewpoints on every subject — and the validity of each.

Kathy wrote: “As someone who has dealt with chronic illness her whole life (as of yesterday, I'm one of those people who carries around an oxygen tank!), I've found that people respond to different chronic illness sufferers in different ways. 

“As unfair as it may seem to those of us who suffer, people don't want to hear about how bad we feel.  This isn't from callousness on their part.  I really believe that the reason people don't want to hear about it is because they can't do anything to help.  If they can't make you feel better, it only makes them feel guilty every time they're reminded that you're suffering.

“If you're a person who is upbeat, and who smiles and participates in life as much as possible no matter how much you want to lie in a fetal position in bed, you're going to have people knocking down the door to be your friend.  If you're somebody who constantly brings up how bad you feel, and how miserable you are, and how you can't get anything done, people are going to run.

“What we sufferers need to understand is that we aren't alone.  Just in our ward, a count was made a few years ago of women who had been diagnosed with fibromyalgia and other autoimmune diseases because one of the women wanted to start a support group.  I think she came up with eighteen of us.  (And I strongly believe the numbers are going to continue to rise as long as we eat polluted food and drink polluted water and breathe polluted air.)

“Although we all got together for lunch to talk about it, the consensus among the group was that our lives were too busy for us to get together and focus on it.  Why focus on something you can't change?  It only makes you feel worse.  The only people who really wanted to continue with the support group were the people who had already driven everyone else off because their illnesses were all they could talk about.

“When chronically ill people are this focused on themselves, everyone else is going to run in the other direction.  We all have days —sometimes MANY days —when we can't get out of bed, and there's nothing wrong with mentioning it casually in conversation.  But there's a line between mentioning something and beating people over the head with it.  Every time somebody crosses that line — either by obsessing on the illness or by expecting everyone else to perform herculean acts of service for the sufferer — all of us who suffer from chronic illnesses feel the effects.

Why Others React the Way They Do

Do We Want Others to Identify Only with Our Illness?

Kathleen Lewis said, “You may need to actually choose which part of yourself you want others to identify you by. A deliberate choice may need to be made to learn to separate how you feel physically from how you feel about yourself emotionally, so that your ill health doesn't cause emotional illness. Always projecting your illness image will affect your relationships. This will subsequently affect you emotionally and physically in a feedback loop manner.” (Successful Living with Chronic Illness, p. 6) she suggests we choose to project the idea that “My body may be sick, but I'm doing great!”

But You Look So Good!

Many chronically ill people continue to look great — which can be a mixed blessing. The general assumption made by others may be that if you look great, then you must feel great. Some chronically ill people are offended when others say, “But you look so good!” when they mention anything about their illness. Kathleen suggests replying with a simple “thank you” or a humorous quip. She says, “Realizing you'll never get anywhere trying to prove that looks don't give the whole story may save some futile attempts to do so. When you try to prove something to someone, you give them control over you.” (ibid, p. 5)

Others Can Only Give What They Can Give

Kathleen cautions us against expecting more from others then they can give. She says, “Your spouse or family members may not be able to support you at all or may be supportive only at times. If they can't do this, they can't. They need support too, and need to be accepted where they are. They can't be forced or expected to be something they're unable to be. You may need to look elsewhere and spread the support out among several people. (ibid, p.12)

How Are You?

Kathleen talks about the difficulty of answering the common question “How are you?” As Kathy explained above, most people truly don't want and can't handle the details of how you are. The best answer I've heard for that question is, “I'm richly blessed.” I have a friend who has spent many years battling serious chronic conditions and is in constant pain. But when you ask how she is, she usually says, “Grateful.”

We are all richly blessed and should be grateful. Sometimes our illness, the weakness of our body or our emotions, is an unrecognized blessing itself. Counselor Ed McCormack, when I confided to him that I was still struggling with both, replied,

Wonderful!  I have my own version of this. It can be quite difficult at times, but it also increases my faith:

God bless us all to feel the Lord's love and learn the lessons he has for us in whatever weakness we are experiencing —and to love others regardless of the level of support they offer.