I have been asked to speak about coping with chronic illness, which for most of us in this audience is arthritis. When most of you hear the word, cope, it probably suggests "to be on top of it, to handle things with great success." Interestingly, that’s what I thought too. But when I looked it up in the dictionary I found the word was defined as "to struggle, to defend, to encounter," and "to have to do." I liked those definitions; successfully working with a chronic illness does mean struggle and "having to do," even when everything in us says we don’t want to do it. For years I taught high school students, and their description of coping was "getting your act together." Other derivatives included: "having it altogether," "getting your ______ (bleep) together," "getting your mind right," and so forth. My daughter calls it "getting a grip." They all seemed to imply one thing, that someday, sometime everything would miraculously fall in place - and voila - life would be perfect. Call me idealistic, call me naive or even stupid, but for a number of years I thought that would happen. Some morning would wake up, take a shower, and bam, my life would all just come together. The ironic thing is that most of us never received a definition of what "together" really meant. In the 60’s it was finding our identity, who we really were. In the 70"s it was being successful, having a good job, making some bucks, probably getting married and having 2.3 kids. Who knows what it means in the 80’s, maybe just not being bored all the time. The trouble with thinking that someday our lives will be altogether is that it denies our humanness. Lots of days things just never go right. In fact, if one is chronically ill, there are weeks and even years when things seem pretty messed up. What I have decided at the wise old age of 47 is that coping is really just doing the best with what is happening in my life at the present time. Or to quote syndicated columnist, Ashleigh Brilliant, "Not being able to do everything is no excuse for not doing everything you can." Doing the best is accepting the reality that there are going to be good times and bad times, happy days and depressed days, fun times and sad times. It is a belief that through it all we can keep going. So today I would like to share some of the ideas that have kept me going the past 33 years. Some of these ideas might fit for you, others won’t fit at all. Part of coping is finding out what works for you individually, rather than buying the "package" that someone else is selling. Another great thing about today’s conference is that we can start a dialogue of sharing. We are not here to compete or show everyone that we’re the best; rather, we are here to share our different perspectives in the most honest, personal means possible.

I contracted Juvenile Rheumatoid Arthritis at age 14. It happened very quickly and left my family in a state of disarray. I changed from a happy-go-lucky kid into an introverted, depressed young man. Coping for me meant functioning at a totally different level: being able to tie my shoes, having enough arm strength to close the car door window, being able to get a decent night’s sleep, and working through what seemed like eternal fatigue. I had a wonderful family who struggled with my illness the best they knew how, but they each paid a price for doing so. Illness doesn’t just impact us individually; it impacts the families we each live in, whether that be our biological family, our work or school family, or the family we presently live with; for me, my wife and my daughter. We all have arthritis, some of us the actual illness, while others have the emotional kind. So another hope I have for today is that you will share your learnings with your families, all of them. Let them in on your tough times as well as your successes. Let them know what you need so they can help you out. They aren’t mind readers even though we often think they should be.

My arthritis "burned itself out" when I was 24, or at least I thought it had. Through surgery, therapy, support and personal resilience, I was able to physically regain mobility and independence. Now that I am older I can look back at that time in my life and see some of the results, positive and negative. Let’s start with the positive:

- I discovered that I actually had a brain that worked quite well.

- I went to college, discovered the joy of learning, and gained a degree in English. I proceeded into teaching adolescents and achieved some very fine success.

- I was able to live with a high level of freedom, not needing any extraordinary support services. I traveled to Europe, made some money, and even made a down payment on a small home which I fixed up into a very livable dwelling.

- I made some wonderful friends, most of whom shared my interests in education, eating and politics.

Yet there was another side to my 20’s, not so successful. Most of this I kept hidden; some of it I even kept hidden from myself.

I didn’t handle stress very well, and ultimately I abused my body through eating and drinking too much, gaining weight and doing activities that were destructive to my joints. I did this because I often felt I had to compete with others, still often denying that I really did have a problem.

I also had great trouble developing relationships with women. In my mind I just never felt that I measured up. Certainly no one wanted to have a relationship with a "cripple." (the most deprecating word I could silently call myself). I remember one particularly devastating blind date, arranged by a friend of mine.

I was so tense about the evening that by the time the movie was over, I could not walk back to my car due to the extreme pain in my knees and ankles. I was mortified and utterly embarrassed. My self-esteem slumped badly for awhile.

I based much of my self-worth on external accomplishments rather than internal acceptance. The end result was an insecure person never quite content that he measured up.

My moods were like a yo-yo at times. Though I never understood how my friends arrived at their conclusions, they often said I was very angry; I denied it vehemently! The truth is, of course, they were right. I was very angry -- angry that somehow I had this illness and others didn’t; that I had to give up activities I dearly loved, and that deep down I didn’t feel very good about myself. Weekends were always the longest times of the week.

It was very difficult for me to recognize the above problems. I was raised in a family where emotions were not openly shared, where problems were solved by being rational, tough, and working hard. Being pleasant, no matter how I felt, was the expected norm. I was often out of touch with what was happening inside of me. Deep down I knew this, and I would have moments of great anxiety and depression.

It would be wonderful to tell you that one morning I finally woke up, realized what was going on, and immediately changed my life around. That, of course, would be dishonest. My learning about coping with chronic illness has come slowly, and new learnings continue to unfold each year. I would credit four things as making a major difference in the way I look at my life:

Going into counseling and finding out about feelings and what they have to teach me. I was amazed at all the things percolating inside of me. I used to think the only people who went into counseling were "screwed up." That is not true. Counseling is a gift to ourselves to learn and discover new means for taking control of our lives. It was a chance for me to grieve over my losses, to learn to love myself in new, more healthy ways. I am amazed how many of us choose to live in emotional pain rather than take a chance to find some real happiness. It’s as if we’d rather be right than happy. I am particularly speaking to the men in the audience, who so often find it difficult to admit their problems.

Getting married and having a wonderful wife and stepchild enter my life. They loved me unconditionally. To them I was a wonderful husband, friend and dad because of who I was. My illness was just something to problem-solve. They taught me the meaning of personal acceptance.

Coming to terms with my family of origin and how we all struggled with my illness. I had to forgive my mother for her overinvolvement in my life; understand my dad’s detachment from my struggles because he didn’t know what else to do but make money to pay the enormous bills; and understand my sister’s continual sympathy as really an expression of her own guilt at not being able to help me out and take away the pain.

Lastly, finding a good rheumatologist who understood that our working together was going to be a relationship based on collaboration and communication. I know my body better than anyone else in the world, and I am in charge of what medications I take, what surgeries I have, and what therapies I use. I need the best expertise possible to help me decide what options are open to me.And I need my physician to listen to me, to ask me about my family, my feelings, my frustrations and my joys.

So this is the general arena that has brought me to this point in time. My arthritis went out of remission six years ago and is now quite active. In 1984 I had my first joint replacement. There have been periods of great struggle. What strategies do I employ to cope with the tough times? I wish I could tell you that I religiously follow all of the suggestions I put on the handout you have. I don’t. There is always room for growth. For the ease of discussion, I would like to make the following remarks by categories: PHYSICAL, EMOTIONAL, AND SPIRITUAL.

When speaking of the PHYSICAL component of chronic illness, what immediately comes to mind is KNOWLEDGE. I need to understand this disease called arthritis. Let us use the analogy of buying a new car. You walk into a showroom and are confronted by a salesman. He asks you what you want, and you say, "a new car." He proceeds to ask you a myriad of questions concerning models, engine, transmission, etc. To all of them you say, "I don’t know." You are either a prime candidate to be taken or likely to make a very big mistake. The same holds true for our bodies. If we don’t know much about what is wrong with us, how can we participate in the process of getting well. We need to engage our physicians in helpful, knowledgeable communication. Lack of knowledge is a form of helplessness; we are open to any quackery or foolishness that comes along. I encourage you to read and learn as much about your illness as possible. I love asking my doctor about studies he hasn’t discovered as yet. To be in collaboration with your physician means you must be learned -- both about what arthritis is and what it does to your body and your soul.

Another physical component is exercise, a big bugaboo for most of us. It is very difficult to exercise when we hurt a lot of the time. But staying active is critical, whether that be through walking, swimming, light aerobic exercise or whatever suits you best. For many years I had an office on the third floor of a building with no elevator. People could never understand why I liked working there. It was a form of exercise for me to walk up the stairs. I’ll grant you it was difficult at times and certainly not recommended activity for everyone. But it kept my muscles toned up and my cardiovascular system in pretty decent shape. For me, exercise is avoiding excuses and being disciplined. It also is an excellent remedy for stress and weight control, two areas that have a direct relationship to pain manage ment. I need to grow and improve in this area, but I certainly want to recognize its importance. The same needs to be said for staying active through work, whether that be through employment, volunteerism or hobbies. We each have so much to offer; our work is also good for others and good for our own self-confidence.

Let us now talk about our EMOTIONAL selves. In so many ways I believe emotions are the key to good health -- for all of us, with or without arthritis. Feelings are the "messages" of our body and brain; it is critical we listen to what is being said. We so often categorize emotions as positive or negative. It’s okay to have positive feelings (joy, happiness) but too often we either suppress or deny the negative. The truth is, all emotions are positive; they all teach us something important, including sadness and depression. Avoiding them doesn’t make them go away; it just drives them underground only to have them re-surface in a different form (i.e., headache, lethargy, ulcers). Better we recognize the so-called negative emotions and let them teach us their messages. To quote Ashleigh Brilliant again, "Mental health doesn’t always mean being happy - if it did, nobody would qualify." Let me stop for a minute and have you think of the key "negative" feelings you associate with your illness. I know what mine are; I call them the big 5. [pause] For me, they are: fear, anger, depression, helplessness and guilt. I suspect some of those made your list also. Each of those feelings is telling me something: "James, you are beginning to catastrophize again, worrying about things beyond your control." "James, you are mad because people aren’t helping you out. Have you made it clear you need assistance?" "James, just what are you angry about? That you think people notice your limp, or that people wonder why you park in the handicapped zone?" "Whose issue is that anyway - theirs or mine?" I trust you follow these mini-dialogues. They are attempts to define what I am feeling and letting those feelings teach me valuable messages. As a man, this has been very difficult at times. Most of us haven’t been given the level of access to feelings women have. We have to work harder at it. Heck, some of us still buy the old myth that "big boys don’t cry." Here’s one big boy who would like to cry far more than he does. When we get in touch with our feelings we can then decide what we need, from ourselves and from others. I know it is a Catch 22 at times; we hurt so we suppress our feelings as a means of getting by. That might work for awhile, but there is a price for doing that. Better to get in touch with our feelings and explore them. Get angry if we must, be sad for awhile, grieve for the losses we daily incur. It has just been the last decade or so that researchers are beginning to explore the relationship of physical illness, emotions and attitude. They go hand in hand. Read the work of Norman Cousins and his battle with heart problems, or the Simonton’s and their work with cancer patients. In a nutshell, we become what we think and feel we are. Listen to how we talk about ourselves, in positive or negative terms. Don’t mistake me here; I am not talking about the just having a positive attitude all the time. I am talking about letting all our feelings teach us and help us direct our lives in positive ways. There is a big difference.

When we talk about emotions, we are also talking about self-esteem. Earlier in my talk I mentioned basing my self-worth on personal accomplishments. Many of us do it by comparison, the death knell of self- worth. Self-worth is internal, what’s inside, not how much we accomplish. I am proud when I achieve some success or gain some recognition, but that is still not the same as who I am. James May is just fine the way he is -- period! And so are you. It isn’t a conditional thing, so when I walk better I will be more attractive to others. Or if I get better grades I will think more highly of myself. You might, but what happens when you get poor grades; you are no good? It took me a long time to realize that I have an illness called arthritis, and arthritis is not who I am. I really chafe when I see someone being interviewed on television and on the screen it says "arthritic," "epileptic," or "diabetic." That’s a false label. We are people who have arthritis, not arthritic people. My head and heart are not disabled. It is time we educate others that having a disability has nothing to do our "personhood." The person most severely disabled is always a human being. Let us always accept people by the standards of compassion, fairness, fortitude and sensitivity.

The final area regarding emotions I want to comment about is our families. In so many ways they are our lifelines. They have taught us messages about coping, and we employ them everyday. Some of these messages are positive; others are a double edged sword. For example, in my German family there is a well developed work ethic. I credit that ethic with much of my personal success, both vocationally and physically in dealing with my illness. Yet, I also have a hard time relaxing, getting enough rest at times. I am a per vasive perfectionist. That part of the family message needs modification. It hasn’t been easy; relaxing still can produce guilt feelings about "wasting time." So ask yourself, what are the messages you have been taught by your family? Is it okay to ask for help? Certainly not in my family. Yet we all need help; that’s not a weakness, it is a strength. Is it okay to assert yourself, even if it means conflict? I hope so. What are the messages about illness in your family? Are ill people weak? Is illness a means for manipulating others?

Another part of working with our families is talking about the family illness. So much effort is directed towards the sick person, yet the whole family is struggling with this illness. I remember so vividly talking to my dad for the first time (I was 36) about how it was for him when I got arthritis. I often thought his stoic attitude was reflective of a man who didn’t care a great deal. How wrong I was. He couldn’t care enough; he just didn’t know what he could do that would really make a difference. Our ability to talk this through has made us the best of friends. I encourage you to really listen to your parents, your brothers and sisters, your spouses and children; find out what they need so as to cope with this illness. We all need to share and clarify expectations, hopes and fears. It will bring our families closer together if we do. We need to do the same with our friends, the people we work with. It will be hard, but it will engender much learning and closeness.

Finally, I want to touch on the SPIRITUAL area. By spiritual I don’t necessarily mean religious or going to church. I define spiritual as being the connection between all of us, knowing that we are not alone. It is being in touch with the beauty that exists around us, whether that be in the smile of a child, a Mozart piano concerto, or the joy of a wonderful friendship. There is a spiritual component to this conference; people coming together to share their lives in meaningful ways. So often it is hard to remember the beauty; the front page of any newspaper screams out its violent messages of hate and destruction. We live in cities where we are often strangers to each other. I think of my most down times with my illness and they always equate with loneliness. I need to know that others are struggling too, that our struggles produce much greatness. It is pain (physical and emotional) that produces insight, that al lows us to ask for help. Here are some ways I consider spiritual means for coping with chronic illness:

Letting go of why we have this illness. We just do. We can look for answers all our lives; we can persist in asking, "why me?" The poet, Edwin Arlington Robinson, said, "there is nothing more futile than regret." The bumper sticker says it best, "Shit Happens." It just does. Read Harold Kushner’s book, When Bad Things Happen to Good People, or Bernie Siegel’s book, Love, Medicine and Miracles. This might sound strange to you, but I believe it important to "embrace" the learnings of our illness, allow them to teach us. I know my arthritis has taught me about gentleness, sensitivity, being a helper. I have developed a sixth sense for people in pain. What has your illness taught you? Use those learnings; they are gifts.

Reach out for support. I coordinate an outreach program for parents of children with special needs. I specifically set up support groups for fathers, so often the "neglected parent." I weekly see the power of connection, the joy of knowing someone else understands and cares. I know some of us feel we are burdens, but as long as we reciprocate, give back the love and concern we receive, we are sharing our lives appropriately.

Have fun, play, laugh! While laughter might not be a cure, it sure makes impossible situations a whole lot lighter. I have had many moments when all I could do was sit back and laugh at the absurdity of it all. What next? I worry about people who are serious all the time. Life needs a goodgoosing once in awhile. When I most get down about my illness, when I have bouts of anger and depression, I know it is time to play. Go see a funny movie, play a mean game of Pictionary, tell a stupid joke. Laugh at yourself.

Lastly, knowing that indeed there is much beauty in this world. For many, religion plays a vital part in that beauty. For others, meditating, finding joy in art, music, theatre and dance, all bring a sense we are part of something divine; there is a connection between all of us that transcends the pain and despair around us.

It would have been easy to have given you a prescription for coping with chronic illness. Do these three things and all will turn out rosy. I only wish it were that simple. Unfortunately, there is no magic. Such formulas not only don’t work, they are deceitful. I trust we will all find the vision and the responsibility to pursue wellness in our lives. I look forward to hearing how you cope with your illness; let us learn from each other.

Your respect and kind attention today is appreciated. I’ll finish with a favorite quotation of mine -- "The true ground of medicine is love." I believe that and hope you do too. I wish you much love, good health, good friends and good fun. Thank you.

From a speech given at the Young at Heart Young Adult Conference. This article was published in the Young at Heart Newsjournal, Winter, 1988-1989, Palos Verdes, CA. All rights belong to James May, jmay@seanet.com