Coping With the Psychological Aspects of Chronic Pain
online conference transcript

Laura Russell, Ph.D., is our guest tonight. Besides being a therapist, Dr. Russell also suffers from chronic fatigue syndrome (CFIDS) and fibromyalgia. She's here to discuss the psychological effects of a chronic illness.

David is the HealthyPlace.com moderator.

The people in green are audience members.

David: Good Evening. I'm David Roberts. I'm the moderator for tonight's conference. I want to welcome everyone to HealthyPlace.com. Our topic tonight is "Coping With The Psychological Aspects of Chronic Pain ." Our guest is therapist, Laura Russell, Ph.D., Dr. Russell is a marriage and family therapist with a private practice in California. We invited her to join us this evening because Dr. Russell offers a unique insight into living with a chronic illness. She suffers from chronic fatigue syndrome and fibromyalgia. We're going to discuss dealing with the psychological wear and tear that comes along with a chronic illness.

Good evening, Dr. Russell and welcome to HealthyPlace.com. We appreciate you being our guest tonight. Can you please tell us a bit more about yourself in relation to your chronic illnesses and what you've been dealing with.

Dr. Russell: Hello, I am very glad to be here. My experiences with chronic pain first began with my husband's injury. He fell off a cliff, had many surgeries, and lived in pain for the rest of his life. This caused me to want to maintain some degree of control over my own condition when I got sick, and of course, I got sick way before I realized I was sick. I have movable pain with my fibromyalgia. It changes sometimes after a few days, sometimes the very same day, but I always have some pain somewhere.

David: And you have been dealing with this for how long?

Dr. Russell: I first developed CFIDS and fibromyalgia in 1982, but didn't get diagnosed until 1990. If I am honest about it, I have had pain somewhere all of my life.

David: So, it's been eighteen years since your illnesses started. What is the most psychologically wearing part of living with a chronic illness?

Dr. Russell: For me, it is the fatigue. I can go and enjoy something and it costs me, as if it was a problem. It is as if the bottom falls out of me all of a sudden. I can't really commit to consistent anything.

David: I would imagine that depression is one of the most troubling aspects of dealing with a chronic illness over a long period of time.

Dr. Russell: Yes, it could be. I have spent the last thirty years of my life studying positive thinking, which helps me a lot. Also depression comes when I am fighting myself and my illness, instead of going with the flow. The one time I got really depressed (and I hate to use psychological language, I'd rather say real sad), was after my husband died, and I had to learn how to do by myself, everything that he had helped me with. He had still been helping me dress when his hospice care started, so I had to be willing to collapse and just cry until I was done. Then, I had more energy the next day, even with the pain hangover.

David: Are you talking about "acceptance" of your condition? Is that an important part of coping with chronic pain or a long-term illness?

Dr. Russell: I think so, and it is also a philosophy of living. Not accepting in a downer kind of way, but in a "dealing with it" kind of way. For example, right now, I am really trying to add pacing to my life. I cannot do that if I am constantly trying to be different than I am.

David: Some people might say that "acceptance" of the condition and its limitations, prevents one from fighting to get better. How would you respond to that?

Dr. Russell: Well, yes, that is why I make the distinction. I don't want to accept a limited life. I don't even think I should have to, nor should anyone. So I am always looking for solutions, yet, a client a long time ago talked to me about a concept of acceptance he learned in his Alcoholics Anonymous meetings. He said, "You cannot walk across a room without first accepting that you are sitting down." It is like that. I could not learn new organizational skills for myself until I accepted that my CFIDS makes my ability to find things for myself so much harder.

David: We're going to start taking some audience questions in a moment, but I wanted to ask you about the term "positive thinking". Many, hearing that term, may think "self-help psycho-babble." Can you please describe what you mean by that and give a couple of specific examples that our audience members may be able to put to use?

Dr. Russell: Oh, that is such a good question. I am right in the middle on this, patient and doctor, and I hate things that are useless to me. I think of positive thinking more like self-talk (the things I say to myself). I can either beat myself up, saying things like, "here you are sick again, when will you ever get a life," which is negative in the extreme! Or I can say nice comforting things and encourage myself to live as fully as possible today. So, I might start as I did today with a migraine and try to tell myself that it is not my fault I have this headache. That I am not bad, or wrong, to be sick and allow myself the ice packs, the heating pad, and diet RC Cola in ice that makes me feel better.

Also, there is some truth to the affirmation business, so I examine books like Louise Hay's, You Can Heal Your Life and use things from it that make sense to me. The problem is, that the effort required, and the process involved, is much different than one would expect.

David: We have a lot of questions, so let's start with this one:

dotwhat: I suffer from chronic depression and a low back condition (grade 2 spondylolesthesis), which is apparently inoperable. Sometimes, I just want to curl up and scream. How do you keep on wanting to keep on?

Dr. Russell: Excellent question. The true answer is that I don't. This is that acceptance again. I let myself fall apart, cry, write in my journal, complain, and feel as awful emotionally, as I do. It is kind of like lancing a boil. Then I start slowly to feel better. If I say nothing else important tonight, I'd like to emphasize how utterly important it is to allow yourself to just be and be okay the way you are.

MJS452: How can you plan an outing, when you never know when fatigue will hit you in the head?

Dr. Russell: I'm sad to say that I cancel a lot of things, and do other things impulsively. I plan things all the time and don't go. I prioritize because there are the things that need to be done, and then the fun things I want to do. I read in a book on fibromyalgia about resting before an event. Sometimes that helps and I get to go.

David: What about sharing your illness with another friend or family member? I'm referring to getting support here. Many people are afraid to do that, feeling they don't want to bother or impose on anyone, or maybe they are also afraid of rejection?

Dr. Russell: Oh, yes, my late husband was wonderful about that and my fiancé is also great, as well as my girlfriend. I can just feel puny and say it. I like it best when I can make it into a joke and we laugh, but sometimes that is impossible. Relationships are critical and support is very important. Everyone in your life has problems of their own and you can share back and forth, and be friends. I think support groups are great, and the internet is wonderful for this too.

calliesara: How do you deal with having job commitments and fatigue that is so terrific that you can barely get out of bed?

Dr. Russell: When my husband was alive, he did everything else and I worked. This included him driving me to and from work. After he died, it became quite difficult and I went on disability. But occupational therapists are very helpful. I go to bed very early, and I read at night instead of other things, just so I will have the energy to try and work.

Again, I have had to accept my situation to find a way around it, like seeing if I can work on the internet. I discovered, for example, that I can work on the internet even when I am ill. However, there are all kinds of accommodations you can use. The occupational therapist helped me a lot with that. For example, they suggested using a chair in the kitchen when I want to cook.

David: Do you hold out hope that one day you will feel a lot better?

Dr. Russell: Sure, always. And then I forget it is not today and I get disappointed. Then I collapse like the writer earlier, and cry and rail against fate, and then I begin again.

David: Here's the link to the HealthyPlace.com Chronic Pain Community. You can click on this link and sign up for the mail list at the top of the page so you can keep up with events like this. We are looking for journalers in the HealthyPlace.com Chronic Pain Community to keep online diaries of their experiences. If you are interested in doing that, here is the signup link. Also, we have hosted support groups on our site. We have Chronic Pain support groups and other mental health support groups. Click for more details and the schedule of all support groups at HealthyPlace.com.

flutterbyinc: I have found that when I add the CFIDS and fibromyalgia to my history of abuse, I feel very defeated and lose the willingness to fight. My life was spent fighting, and I don't want to now.

Dr. Russell: Your question is a good one too. Most of us who had terrible abuse feel that we shouldn't have any more problems in life. After all, it has been hard enough. The problem is that the abuse history affected my immune system, and more people with abuse histories, have problems with illness and pain. If it helped me to refuse to fight for myself, I would, but that is just treating me like my abusers or neglectful parents did . So handling chronic pain, abuse, or neglect, requires that I learn how to be my own good nurturing parent.

It is unfair that I have to do this now, and I have a right to be angry about it (and I often am). I don't get to neglect myself, or leave myself in pain out of spite toward the people who hurt me. We, all of us hurt children, deserve better than that. I suppose that is what keeps me going. The realization that I deserve better than I got, and no one is going to see that I get it unless I do.

David: Dr. Russell's website is here. Here's another audience question:

Allie41: What do you use to control your pain?

Dr. Russell: Not a lot. I watched my husband loose everything important to him from the heavy drugs he took and needed. I alternate aspirin with Advil, because I am allergic to Tylenol. When the pain is too great (like yesterday), I take Darvon. I also try everyday to use my relaxation skills. At the same time, I really try to use the prevention skills I have as much as possible. If I took the Darvon everyday, as opposed to when I really needed it, I am concerned that I would need something stronger and stronger.

David: Earlier, we were talking about turning to friends or family members for support. On that subject, here's another question:

dyas: How do you deal with family members who don't understand and don't seem to want to try to understand?

Dr. Russell: I might sound for a moment like a smart aleck, but I avoid them like the plague. We were talking earlier about abuse, and anyone who has abuse in their history, has people who will use your illness to dump on you really badly. I do my best to stay with people who like and love me, and see the real me in spite of my illness, that person who is still dancing on the inside.

I had a second collapse with the CFIDS in 1990. I fell down and broke my ankle and sprained the other ankle. Then I developed skin cancer on the tip of my nose, and I didn't speak to my family of origin for over a year, but only after I wrote them a letter explaining that I do not allow people to treat me like that.

However, it is more complicated than that, because sometimes you have people in your life who really love you and want you to be better, but they are co-dependent and try to help you in all the wrong ways. The solution for that, is to tell them how they are making it worse, and what you really need is to be listened to and heard, or whatever you really need. I had to do a lot of that with my fiancé who didn't know me before I got sick.

David: Here's another question:

harrietmouse: Hi, I've had just been told I have fibromyalgia. I'm seventeen years old and I was told I developed it when I was two. I've had pain all of my life. Do you think there is any chance of me holding a job or even being able to drive a car?

Dr. Russell: Yes, I do. There is a lot of help out there for you. Ask your doctor to send you to the occupational therapist and visit the Arthritis Foundation. They have wonderful help, suggestions, a program for dealing with fibromyalgia, and a workbook I use for myself a little at a time. When you first are diagnosed is the best and worst time of your life. You are glad to finally know what it is, but then you think what does this mean for my life? I've always (this is more positive thinking) collected information about heroes; people like Helen Keller, for example, who overcame her disability. When I have nothing else to go on, I remind myself that it can be done.

David: Here are some helpful audience responses on how to deal with the various psychological issues associated with a chronic illness or chronic pain:

dotwhat: Sometimes, when I feel like I don't have the will to go on, I have to sit back and know that I do have the will. Even in small ways, like showing up here tonight, this is an effort on my part to help myself, and it's not the action(s) of someone who cannot go on.

HelB: Stay in touch with others with the same problems. You will realize that you're not alone, and that sometimes you're problems seem minimal in comparison.

coie: My more than fifty years of experience, I say learn to cope. The sooner the better. Don't deny and don't waste time; especially the good time.

HelB: Pray!

David: We have several work-related issues here:

nd2bpainfree: I still work full time, but have been put on medical leave for two weeks for crisis intervention. However, I still feel guilty for leaving my co-workers in a lurch.

Dr. Russell: Boy do I understand. I taught special education and when we went off of year-round school, I couldn't keep it up. I missed my little darlings, and I felt guilty about leaving them. However, you can only do what you can do. So you have to tell yourself that you are okay the way you are. You are more likely to be able to return, if you can treat yourself good.

nicegrrl333: I am a waitress with fibromyalgia. Would finding a less active job help or hinder my fibro?

Dr. Russell: That is more likely a medical question. Ask your physician. I can answer in the general mode. They say that regular exercise is supposed to help fibromyalgia. I did find that the walking I had to do when I was teaching helped me to feel better over time. You really need to talk to your doctor, who knows you and everything about your condition.

David: Here are a few comments/observations about what's being said tonight:

harrietmouse: I have to say that my doctor told me to get in a [heated] pool and move for about ten to twenty minutes three times a week. I feel stronger and more able to deal with the pain.

meeks33: I left my job because I was suicidal. This was due to fibromyalgia, sleep disorders, and chronic pain. No one would do anything or understand. I have not had to take any antidepressants since I did not go back to my job. My supervisor knew of my illnesses and took advantage of the situation.

coie: I have found that the people closest to me, and those from "before," are less supportive. My "understanding" comes from others with the same problems.

Dr. Russell: The comments suggest that you all are accepting yourselves and taking good care of yourselves. And those things are different for each person.

David: Here are some questions, Dr. Russell, on being a parent with a chronic illness:

kironmaiden@aol.com: What about single mothers, no husband, no family? Denied Disability? No Answers?

Dr. Russell: That is very difficult. Disability, on the federal level in the USA, is almost always denied the first time you apply. After you have cried enough, you will be able to see more clearly what you need to do for yourself. There are answers out there. Sometimes they are hiding but they are there.

HelB: I have two children at home, and I am torn between applying for disability or finding steady work that I'm afraid I won't be able to commit to. It is very frustrating. Everyone keeps telling me that if I am working in the meantime, I cannot apply for disability. How am I supposed to survive and support my family?

Dr. Russell: Yes, it is hard to know what to do. After my husband died, I went back to work and it was a nightmare. Then the following year, I tried again and lasted two weeks. I again tried and didn't even get there. That is when acceptance is so important. There are great books on fibromyalgia and other illness that talk about what to do and where to find resources. Let me get one off the shelf for you. The first one I can find is called , Coping With Lupus, but there is information online and from support organizations keyed to your condition that can tell you your options.

David: Also, you might check out the chronic pain books in our online bookstore for some helpful books.

Here are some additional audience comments on tonight's discussion:

Dmoller: I am to the point that I can't give in, or I feel I will never come back. I am on eleven different medications, and I wish that one pill would help!

Dr. Russell: Just one additional comment to Dmoller: It always feels like I am going to fall apart and never come back when I let go, but that is not true.

JeeJee: Abused people can benefit in CODA chats, etc.

harrietmouse: My reason that I'm still alive is God. Through him I can do all things.

coie: Try and fail, but try. The help comes when we help ourselves, even if we fail, and reapply to disability.

Victory2: I have a very understanding husband this time and that helps. He's my friend and never seems to get frustrated with me, but I still hurt so bad even on Percocette.

meeks33: I was going to apply for disability under severe depression. The hematologist said I would qualify under that, before ever doing so for fibromyalgia. My husband doesn't want me to. In case I ever go to work again, it might make it harder to get a job. But now I live with the fear of just ending up in the same boat if I ever work again. I feel that this is a legitimate right, as I do have a problem with depression, and have been suicidal once before. I am a fibromyalgia patient of six years, and have had many problems.

JuneHll: How do you keep from just giving up?

Dr. Russell: As I wrote before, I don't. First I give up and go into the feeling. I do this by journaling and crying, and crying and journaling, until I am finished with the feelings. The thing about these feelings of sadness and despair is that you and I, and all of us, have a right to feel that way. These are sane feelings and normal responses to life and not sick feelings! It is healthy to feel sad when you loose many of the important aspects of your life. It is healthy to feel angry when life gets tough. When you feel these feelings, and not deny or fight against your normal healthy but painful feelings, they go away. Then you can get up and do whatever you have to do for yourself.

David: A few more comments from the audience:

Victory2: A hot tub feels wonderful for the pain. Not the bathtub size, they are too hard to get out of, but the health club size.

meeks33: I found some relief in writing my religious poetry. Even when I had the breakdown a month ago, in the emergency room.

Sarah21: I think the feelings of loss, despair, etc., come with the chronic pain.

Dmoller: I feel like a failure to my family. I have always been the strong one and know I am the weaker.

KimboSz43: But feeling angry is bad for fibromyalgia. It is part of stress, and stress is key.

Dr. Russell: Denying the anger is even worse. Those feelings are normal. Indulging in anger all the time, at everyone and anyone, indicates an anger problem.

For example, the day before yesterday, I was angry at my youngest grown son and the next day I had a headache. I could have avoided the anger, and taken the real energy it takes to bury anger, and ended up worse. Then you have to do all kinds of funny machinations to avoid the awareness that you are avoiding and this never, ever helps you feel better. The only healthy way to avoid stressful emotions is to feel them, journal, find a healthy outlet and learn from the experience what to change for next time.

David: Dr. Russell mentioned journaling, We are looking for journalers in the HealthyPlace.com Chronic Pain Community to keep online diaries of their experiences. If you are interested in doing that, here is the signup link .

I know it's getting late. Thank you, Dr. Russell, for being our guest tonight and for sharing this information with us. And to those in the audience, thank you for coming and participating. I hope you found it helpful. We are building our chronic pain, chronic illness community here at HealthyPlace.com. You will always find people in the chat rooms and interacting with various sites. Also, if you found our site beneficial, I hope you'll pass our URL around to your friends, mail list buddies, and others. http://www.healthyplace.com, and again, here's the link to the HealthyPlace.com Chronic Pain Community. You can click on this link, sign up for the mail list at the top of the page so you can keep up with events like this.

Dr. Russell: Thank you for inviting me and listening.

David: Thank you again, Dr. Russell. The insights and information you passed along tonight should be helpful to many here. Good night everyone.

Disclaimer: We are not recommending or endorsing any of the suggestions of our guest. In fact, we strongly encourage you to talk over any therapies, remedies or suggestions with your doctor BEFORE you implement them or make any changes in your treatment.

On Wednesday and Thursday nights, we hold topical mental health chat conferences. The conference schedule and transcripts from previous chats are here.

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