Reviewed by Phillip Waite, Ph.D.
When we ache, oh, how we ache! But when we feel half-decent, then what? Do we sit at home and dread the moment in which the chronic pain returns? Or do we run out and catch up on a bit of life and have some fun while the going is good? This is the quandry of living with chronic illness.
During the last nine months I have started taking a new drug and have had to go off of it on three occasions, due to an infection. Each period of time I am off of it for at least a month and the road back to feeling better is long and bumpy. One week I am bending over getting laundry out of the dryer without much difficulty. Three days later I can barely get out of bed and walk across the room. It is a never-ending cycle of feeling good, feeling bad, feeling some better, feeling much worse, to feeling better again.
It's difficult for me to keep up with what is going on in my own body, but a new challenge that I have discovered is knowing what to share about my condition and with whom. Have your chronically ill friends ever made you feel guilty because you had a good day? Have your healthy friends began to be a skeptical about your illness because they saw you do something that a week earlier you said you couldn't do? We asked this question to some of the people that visited our website and they confirmed to me that I was alone not in this situation.
"The other day I told a friend that I had decided to take a vacation this summer," explained Tami. "She immediately came back with a response about how she didn't think that I could sit in the car for that long, and why did I think I needed a vacation when I couldn't even hold down a part-time job. It really hurt and I didn't quite know how to respond. I could see her point, but she didn't know the whole story."
"I love to ride my bike," shared Samantha, "but I don't do it very often because I pay the price the next few days, if not more. Last week I decided that it was such a nice spring day that I was going to ride around for a few blocks. Of course, I saw my neighbor, who had a surprised look when I rode by. When I went out to get the paper the next day, she was in her yard and she said, 'So! When are you going back to work? Looks like you have your energy back now!' I just smiled. How could I explain that my walk to get the paper had drained me of energy for hours?"
Why is it that we feel that we have to justify everything little area of our life to those around us? Can a person with a disability placard not drive a sports car? Can a woman who has a chronic illness not have a child? Can a teenager who has diabetes continue to play ball? Yes! But too often we get trapped into feeling that we must prove that we are doing our best - yet not too well. We must keep a positive attitude, but not be fake about our joy. We must lean on our faith, but not become too religious about the whole thing. We strive for a life, but not one that is too much fun.
"The loss of group membership is a fundamental change in the life of the chronically ill individual," writes Dr. Douglas Wiegand, in Struck Down But Not Destroyed. "Every role that you are expected to fulfill must be rethought or renegotiated." It seems to me, that as a chronically ill person we may lose group membership from the "healthy" circle, but we gain group membership in the circle of chronic illness. Oftentimes, the support and encouragement that we find in this group helps us keep perspective on things and give us the friendships that we need to survive. However, when we do something that does not conform to the membership requirements of the chronically ill circle, our relationships with these new friends can be jeopardized.
Perhaps our chronically ill friends feel that the relationship we have with them is now threatened. They risk losing us back to the "world of the healthy," or at the very least, we are denying that we want to be their friend, and be a part of this "illness society." Our willingness and desire to participate in an activity of the healthy is taken personally by chronically ill friends as a sign that we are denying them and all that they cannot do.
This makes sense: Do we not want to be healthy? Do we not want to have a body that is not downtrodden with chronic illness? Most of us would agree, yes! But we also accept reality and the fact that this is out of our hands. So we accept our membership into chronic illness, but we go back and vacation now and then in little ways, with the healthy side. We don't want people to take it personally. And we certainly don't want to be accountable to our chronically ill friends about every event we participate in. How do we get out of this cycle of guilt and self-consciousness? Follow these steps:
Set Your Priorities Straight. We will never be at peace if we are trying to please our friends.
Tell Yourself to Cease Comparing Yourself to Others. You know what your best is for each and every day. If you feel like having a cup of coffee that isn't decaf and (heaven forbid!) a scone to accompany it, you really don't owe your friend an explanation. You know your illness, your body, and its limitations and it's up to you to be wise in what you expose it to and shelter it from.
Examine Your Own Attitude. When a friend starts to feel better and we are still in a great deal of pain, it can be hard to rejoice with him or her. What do we say? How can we act happy when we are wondering inside, "Why not me?" As we share in the sufferings, so we should rejoice with others.
Prepare Your Response When Others Question Your Health or Illness. Be ready to respond when someone tells you something that you would rather not hear, so that you can respond with grace.
Serve Others in Small Ways When You Have the Strength. So you feel a little better - now what? When you are feeling better use a bit of that energy to make the difference for someone else. Write a note of encouragement to someone who is hurting. Call an old friend. Jump on the Rest Ministries website bulletin board or pen pal area and encourage a total stranger. You will feel better and you will be giving back.
Lisa Copen, who lives with rheumatoid arthritis and fibromyalgia, is the founder and director of Rest Ministries, Inc., a Christian organization for people who live with chronic illness and author of "When Chronic Illness Enters Your Life" Bible study, among others. Visit the author's web site at http://www.restministries.org.