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    Albert H. Smith, PH.D., CEAP

  Chronic Illness
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Coping with Chronic Illness

Coping with Chronic Illness: How to Cope
The way you cope with your illness may have a lot to do with how you dealt with crises in the past. As you handled them, you gained strength, and you may have benefited from the support of others.

When dealing with chronic illness, you may find strengths you never thought you had. And while chronic illness may close the doors to some parts of your life, it may open others.

Patients coped with chronic illness in many ways. Acceptance of the condition is essential, as well as finding ways to feel more in control.

Building on old relationships and starting new ones are also important.

"For a long time it seemed to me that if I could just endure a little longer and be patient, I could resume my life. But it was one disease after another. It seemed as if I was taking one step forward and then two steps back- always an obstacle in my path to good health. Then, at last, it dawned on me that these obstacles were my life."

"Having a chronic illness is a very emotional thing. You grieve, you feel sorrow. But you cannot stay there. You recognize that, yes, you're justified for feeling that way, but to stay there would rob you of the years you've got. You can be useful, you can get things done, although not the same things that you did before. You still can do things and you still can enjoy plenty."

Taking Control
Chronic illness often requires you to release control of certain parts of your life. It is normal to feel angry because you no longer have as much self-mastery. But it is possible to find new ways to regain a feeling of control.

Control through knowledge
"I know about lab results and what my blood counts are supposed to be. I know when I'm supposed to get what medication. I know as much as I can, and if I don't know, I ask. What others don't know, we learn together."

"I don't like being sick, but I deal with what I'm able to deal with. I can't change the fact that I have it, but I can see to it that I know as much as possible about my condition so I can take care of myself. I try to be very careful about taking my medicine accurately, eating the right kinds of food, exercising as much as I can, and getting plenty of sleep at night. The rest I leave in God's hands and don't worry about."

"You never get over grief or pain. You recognize it but you move past it. Sometimes you get back into it. Then, you recognize it and you move past it again. If you dwell in it, you sink lower and lower, and all there is, is the pain. What helped me get past my grief and start coming up for air was the fact that I am curious about a lot of things. I wanted to know more about the disease."

"I learned as much as I could. I got informed so I could make better decisions."

"I sought out information so that I could be proactive about my illness. I'm curious. I like to know what's being done to me and I like to know the results of the procedures."

Control through planning
"I try to plan: I plan for my needs, I planned my estate, and I planned my will."

Control through positive thinking
"I decided to find things I can do-things I am good at doing."

"Always fight. Sometimes I take a deep breath, sometimes I take a time out, but I know that I'm going to continue just as long as I can. I just don't give up. I think that people who are tenacious manage to rise above the disability better than others do. People need to look at what they can do, and be happy, because it could be a lot worse. A lot of them can still do something."

"I use the theory 'nothing lasts forever.' This will be over soon. I'll get through it and won't have to come back to this moment again."

"If I were to let go, I would feel like I failed in some way. I know a time will come to let go, but now is not that time. I've got to keep fighting."

Control through problem solving
"I've learned to turn negatives into positives. For example, when I was told that I had lost my hearing due to side effects from the medication that was keeping me alive, I got hearing aids, a telephone for the hearing impaired, and closed captioned TV."

Benefiting from contact with others

Cooperation with the health care team
"Work with the medical team. If they recommend tests or procedures, be cooperative. Help them to find the answers for you and for them. They don't draw blood just because they want to They do it so they can help find the answers to your disease."

"I hate the feeling of not being in control. When you're a patient there's only so much control you can have. I want all the control. Learning to relinquish some of that control is really hard. But the medical system is what's keeping me going."

Deepening personal relationships
"This illness has brought us closer together. My friend has shown me the power of his love by the way he has cared for me. I appreciate him immensely."

"You cannot receive more than you give. It's a rule of the universe. You can call it religion or whatever you want to call it. You can call it God; you can call it nature. You cannot receive more than you give."

"I was going through so much that year that I had people tell me that if they were in my place, they would have committed suicide. But what would that have fixed? It would have only made the situation worse. Then I would have had four children left in the hands of a man who had just walked out because he couldn't handle the situation. My children gave me strength."

Support networks
People are often relieved to learn about others who have experienced what they have gone through. Support groups help, as do informal networks.

"I didn't know what I had. I just got a lot of colds and just seemed to get sick real often. I used to wonder, 'Is there anyone else in the world who has these problems? Am I the only one?' Finally, after seeing many doctors, I came to the NIH and they had a name for what I was experiencing. I thought, 'If there is a name for this and people study it, there must be other people who have it, too.' "

"I've never gone to a formal support group, but I believe everybody needs support. I find mine through sharing my concerns and greatest fears with my friends."

"I think of NIH as my second home. When I come here I see friends and caregivers whom I consider a part of my extended family."

"I found a support group back home. It meets two times a month at a local hospital. I find that being able to sit down with other people who deal with the exact things I do, really helps. I can't keep it all inside. I know that saying, 'You take it out on your gut.'Well, I already have gut problems, so if I keep my feelings inside, it will only make things worse. In a support group I don't feel self-conscious when I talk about my illness, because these people understand."

"I have a few friends who don't know what's going on with me. Not everyone needs to know all the details of my life. Then I have friends with whom I share deep connections. They know that I'm not well and if I say I can't do something, then I can't do it and it's OK."

Being able to ask for help
Independence is highly valued in our culture. Those with chronic illnesses may face the challenge of learning how to ask for help, and being able to accept it.

"I used to hate it when others were always trying to help me. They all knew something was wrong, and they felt that they needed to help. I've learned to accept some help without having my pride get in the way. I say, 'No, thank you' to things I can do for myself, and I've learned to ask for help when I need it."

"I'm learning how to be humble. I've really had to ask for help over and over again. This is the most difficult thing for me about having a chronic illness. Most people don't want to ask for help. I don't. I've been independent all my life. Now when I have to ask for help, it's not easy. I hate it. So I started out trying to do it all myself. Then I realized, 'Now wait a minute, this isn't fair to other people. People get a lot out of giving.' So I needed to find a way to let other people give."

"I was afraid that I might not be able to live independently. Of course I would never admit this to anyone. But one day I decided I would try, and with the support of friends and family, I did it!"

If you are facing a chronic illness or if you are caring for someone who is, please give us a call. Counseling helps.