Depression

Everybody Gets the Blues: What to Do When It's YOU

"I do not live with Crohn's disease; it lives with me," says Amy B. Trachter, Psy.D., Ph.D., a clinical psychologist and author of Coping with Crohn's Disease: Manage Your Physical Symptoms and Overcome the Emotional Challenges. "There's a big difference." Dr. Trachter agrees everyone occasionally experiences a range of negative emotions. "Most people feel angry, sad, depressed, frustrated and annoyed; those are all natural emotions to have at times." People with IBD are no different.

"Having a chronic illness itself can cause stress, especially initially," says Audrey Kron, M.A., C.G.P., a medical psychotherapist who also has Crohn's disease. She is also the author of Ask Audrey and Meeting The Challenge: Living With Chronic Illness, two books on dealing with IBD. "Feeling down, upset, and depressed is natural, even normal, at times."

Kron believes that there are things you can do to help when a down mood takes over. "No matter how bad the illness is, there are usually things you can do. Sometimes this simply requires changing the way you look at life." But, when you live with a life-altering illness, that may be easier said than done.

"Having IBD is like walking around with a cloud over your head—you never know when it's going to rain," says Lorraine Marshall**, a woman who has had Crohn's disease for over 30 years. "It's so frustrating. It is one thing to have something for a week or two and have it go away, but dealing with it for weeks and months and years…it is amazing how people deal with it."

Kron agrees. "This disease is not consistent. That's why you need to prepare during the times you feel well for the times you are not. When you are prepared, things are less likely to happen."

"IBD is unreliable and unpredictable. Preparation is the key to handling the unpredictable situations that may arise," Dr. Trachter adds.

Lorraine follows this advice by finding out where the bathrooms are ahead of time, and taking extra clothes or a dose of Imodium® if she knows she'll be out for the day.

"That's the thing about IBD," she says. "You can do everything right: take your meds, eat the right foods, and still be sick as a dog." The perception that you have no control of your life can lead to frustration and depression. What's more, your image of yourself as a person with IBD can be damaging to your self-esteem.

"Perception is everything," Dr. Trachter says. "People who have Crohn's disease or ulcerative colitis are not shameful, nor is their behavior due to their disease activity. To truly help yourself, you have to accept yourself for who you are, including the disease, which is part of who you are."

"But you can feel vulnerable," Kron asserts. "In our society, we often think of people as healthy, strong and perfect. When you have IBD, you may feel you are not as whole; that society looks down on you. This illness can crack away at self-esteem because it is not a socially acceptable disease."

According to Dr. Trachter, embarrassment is not uncommon to those living with IBD. "Everyone learns to 'hold it' by the age of two," she says, "hence, having an accident in adulthood may facilitate embarrassing feelings, especially in social situations."

"It can be embarrassing," Lorraine says. "I worry about the cramps, the odor, the noises, and whether the bathroom stalls are vacant when I use public restrooms." Lorraine was diagnosed as having Crohn's disease as a young bride with small children. She had her first surgery in her 20s.

"My doctor was doing an IBD education day at the hospital just a few days after my surgery, so, still recovering, all bent over, I made my way there," she remembers. "Someone told me, 'I had three surgeries' and someone else said 'I had two,' and I wanted to go home and cry. I had never considered the possibility that after all this—a difficult surgery, a long recovery— it could come back."

"Most depression occurs at night, when you are alone in the dark and feel helpless," Kron adds. "People feel depressed if they perceive that they can't live their lives, can't work, or can't have relationships. But they can!"

Dr. Trachter says: "My message to patients who feel depressed is: You are not your disease. You can do anything anyone else can do. Perception is everything, and people take their lead from you. Allow yourself a few days to throw yourself a pity party if you wish, and then move along. The best way to feel better is to help yourself! Your disease isn't who you are, it is only a part of who you are, and you decide how big or small you want that part of your life to be."

Lorraine's Blues

It was after Lorraine's second surgery and long remission that she went into a major flare-up that could not be controlled. For nearly 14 years, the disease had been inactive, controlled with maintenance doses of medicine. Then her disease became active again.

"I felt like there was no hope," she said. "It was frustrating. I just wasn't coping with anything. I didn't know what else to do, I was so entrenched in this. It was affecting everything I did. Our lives were totally disrupted. I was sick most of the time and woke up thinking, 'How am I going to get through the day?'"

Although these feelings can be difficult to deal with, Kron recognizes that they can often occur as a result of a specific event, such as having an IBD flare-up. She refers to this as a situational, or reactive, depression. "You have a chronic illness and you are not feeling well, perhaps out of control. Feeling this way at times for a little while is normal, and developing some coping techniques for these times would be helpful." (For helpful hints, please see Tips for Helping Yourself If You Are Depressed.)

But if you can't get over it and the feelings linger, it may be time to seek professional help.

That's what Lorraine did. She began seeing a qualified psychotherapist. " I went on medication for about two years, and it was the best thing I ever did. It was hard to be positive all the time, hard to see the light at the end of the tunnel when I was constantly sick. It took over my life after a while—it was the only thing I could think of."

"In times like that, it is important to remember that active periods of disease are temporary, and won't last forever," Dr. Trachter says.

"Your mind can only think of one thing at a time," Kron says, "…in this case, your flare-up." Her remedy is to change the one thing you are thinking about. Dr. Trachter refers to this as "emotion-focused coping." She advises involving yourself in activities that take your mind off the disease. She also suggests keeping a journal: "A journal will allow you to identify your thoughts and feelings, and will help you when you feel physically well. It can serve as a concrete reminder of how much you've learned."

Dr. Trachter acknowledges that it is easy to become depressed when you can't eat the food that you like, are tired all the time, are having difficulty sleeping, or are experiencing chronic pain. It also may become easy to allow yourself to stay near a bathroom, where you are safe from accidents and having to explain to people that you have chronic diarrhea. After all, it may be easier to isolate yourself than explain why diarrhea is hampering your lifestyle. Depression, like anger, denial, and anxiety, is a normal human response to a chronic illness, or to chronic symptoms.

"Although you might be sad and uncomfortable," she says, "it is at those times that you must find the inner strength to go beyond the day-to-day frustrations and see the bigger picture. Your symptoms will not last forever. In time, your symptoms will remit, and you will feel better. It is at these times, when you are feeling physically tired and ill, that patience becomes a virtue."

Both Kron and Lorraine agree that these feelings are not just about the illness; the illness can intensify other stresses that need to be identified and brought out into the open.

"When you're sick, it can bring out other issues not having anything to do with the illness, like relationship issues. But when you feel more vulnerable from being ill, it seems these things come up sooner than they might have otherwise," Lorraine explains.

Kron agrees that there are pressures on relationships. On the one hand, relationships are an important support system for helping you out of your depression. On the other hand, if your friends or family are having difficulty accepting your illness—or if there are other issues in your relationships that haven't been resolved—these problems can intensify your stress. What's more, these other types of issues can persist even after the original problem you sought therapy for has been resolved. In such cases, long-term therapy may be beneficial. (See Signs and Symptoms of Depression.)

What You Can Do

There are things you can do to bring your mood up when you're feeling out of control. Kron believes the key is to push yourself and pace yourself. "You don't have to give up things in life, you just have to modify," she says.

"The more you focus on what's wrong with you, the worse you'll feel. Don't give up hope—new things are always coming out. Everybody has problems. Taking responsibility is very important. This allows you to look at your options, and this can be very empowering. You have choices. You have options," Kron asserts. "You really need to know and understand yourself, you need to know what's really going on with you. When you feel discouraged, realize you do have control over your life—you have control over how you see what's happening." Your journal is an excellent tool for this process.

"Nothing in life is impossible," Amy Trachter agrees. "People who live with IBD can do anything anyone else can do. The only limitations people have are those they place on themselves."

How, then, do you push past those limitations, even if they are self-imposed? First, there's the domino effect. If you can just make yourself do one thing, you're bound to move on to something else. "If I can just make myself get up and get dressed, once I'm dressed, it's easier to do other things," Kron says. (See Tips for Getting Out of Bed)

"Knowledge and education is really the only control we have over this disease," Lorraine says. "It's a part of my life—there is nothing I can do about it except deal with it."

"You are taking so many medications," Lorraine continues. "You are so frustrated and you feel so out of control, you can't eat, you are so tired—the fatigue is unbelievable. It has a life of its own, it does what it wants, it appears when it wants. Years ago, I felt more isolated. I didn't speak much about it, but I don't feel that way now—I speak much more freely and people are much more accepting."

Kron suggests that a willingness to help others when you are feeling bad can be a good remedy. Getting away from yourself helps, and volunteering, connecting with others, is a great way to build back self-esteem.

"See that you get pleasure every day," Audrey recommends. "Do a little something for yourself every day that gives you pleasure."

Support is also extremely important. Making friends, and staying in touch with the friends you already have, is an important part of dealing with depression. Talking about the disease can be very difficult, but opening up and communicating is important. Establishing connections with people who want to listen is key.

"Try to establish a tremendous support system so you don't tax any one person too much," Kron says. "Try to do as much as you can on your own. Finding other ways to handle unexpected events are helpful. If an event gets ruined, find a way to turn it into something else, something positive."

Dr. Trachter says that social support is always helpful, but even more important is knowing how to access and use support resources for the greatest benefit. "Asking for help is easier for some people than for others," she says. "Recognizing that you need help and asking for it will be of more use to you over the long haul than 'doing it yourself' and suffering the consequences of your actions."

"At the time I was first diagnosed, I didn't go to support groups," Lorraine admits. "We knew nothing about it, I knew no one else with this disease. We joined the foundation and started scrambling for information. CCFA support played a big part in my life. A chronic illness like this takes its toll on you. In even the calmest person, it can change your personality."

Lorraine now leads several CCFA support groups. "Sometimes newly diagnosed patients find it so overwhelming and frightening to think that this, too, will happen to them. We try to explain everyone is different."

There are other means of support if a local group is not available in your area, or you don't feel quite ready to join a group. For example, there are some excellent publications about IBD, and you may find a sense of community on the Internet through chat rooms and bulletin boards. (See Links).

Guilty feelings also come up—both for people with IBD and for their loved ones. People with the disease may feel guilty when their illness makes them irritable and impatient with their partner or children. Family members may feel guilty for being angry at the person who is ill, especially because of something that makes them feel out of control, like canceling plans at the last minute because of a flare-up.

"You do feel guilty because you are affecting everyone in the family. My family was very supportive. Lots of people don't have that and it makes a big difference. Sometimes I feel it's degrading and humiliating having my husband take care of me," Lorraine admits.

Dr. Trachter believes that mutual exploration of feelings about the disease and its influence (or lack thereof) on your relationships helps you incorporate your disease into your life.

"An effective way to handle these types of concerns is to discuss them honestly and openly with the people who are involved," she explains.

"Neither you nor the people in your life are mind readers. You can't predict how people will react to you, nor can others be expected to know what your concerns are, unless you express them. Open discussion of how you're feeling, what your concerns are, and how the people in your life can be of help to you may alleviate the worry and anxiety you experience about the effect of your disease on your relationships."

"What are you going to do? You are living, you are breathing, you have to deal with it," Lorraine affirms. "Do I choose to lay down and wither away or do I choose to move forward? I choose to move forward."

Laura Hitchens is Manager of Patient & Professional Education at CCFA.

Audrey Kron, M.A., G.C.P., is a medical psychotherapist, marriage counselor, and author. She also has Crohn's disease.

Amy B. Trachter, Psy.D., Ph.D., is a clinical psychologist who specializes in treating people living with gastrointestinal disorders.
Dr. Trachter's book is published by New Harbinger Publications and is available at amazon.com.

Special thanks to Lorraine for sharing her story with us.

• Signs and Symptoms of Depression
• Tips for Getting Out of Bed
• Tips for Helping Yourself If You Are Depressed
• Resources for Depression
• Short- vs. Long-Term Therapy