Date: May 25, 1999
Interstitial Cystitis Network - Chat Log (© 1999, www.ic-network.com)
Topic: Acceptance
Speaker: Susan Milstrey Wells
Author "A Delicate Balance.. Living Successfully with Chronic Illness."
<icnmgrjill> Welcome to the ICN support chat for May 25, 1999. Tonight we are privileged to welcome Susan Wells as our speaker for the evening. Susan has spoken at several IC and chronic illness conferences throughout the USA and is the autor of "A DELICATE BALANCE.. LIVING SUCCESSFULLY WITH CHRONIC ILLNESS." Her book is currently available through your local bookstores and AMAZON.COM
<icnmgrjill> Susan, welcome to our chat. We're so glad that you could join us this evening.
<SusanWells> Thanks, Jill, I'm really glad to be here.
<icnmgrjill> The topic for tonight is on acceptance, coping with IC and chronic illness. I know that some people get very annoyed when we talk about "accepting" IC. They prefer to "fight it" or to "conquer" their illness, which, at times, seems to add more stress to a patient's life. Would you agree?
<SusanWells> Yes, Jill, fighting takes away precious energy that we need to get well. As I think you'll see, acceptance is a very positive choice to use the energy we do have to get well.
--------------- PRESENTATION BEGINS ----------------
--------------- "Understanding Acceptance" ----------------
<presentation> * Acceptance Isn't Forever.
<presentation> We will move between denial and acceptance many times during the course of our disease.
<presentation> * Acceptance Isn't About the Future.
<presentation> Acceptance is about today. Accepting how we feel today allows us to take care of ourselves when we need to.
<presentation> * Acceptance Is Not an Admission of Failure.
<presentation> Inappropriate comparisons are self-defeating. Remember that everyone has limitations--often, we just can't see them.
<presentation> * Acceptance Doesn't Mean Giving Up
<presentation> Acceptance doesn't mean we're surrendering, it just means we're advancing in a new direction.
<presentation> * Acceptance Is Not Denial.
<presentation> Acceptance is a positive choice to use the energy we have to move forward with our lives.
<presentation> * Acceptance Means Adapting to the Changes That Chronic Illness Brings.
<presentation> These changes may seem onerous at first, but soon they become part of who we are.
<presentation> * Learning to Live Successfully with Chronic Illness Is Really Nothing More, or Less, than Learning to Live a Balanced Life.
<presentation> Accepting ourselves as full and worthwhile human beings who happen to have a chronic disease is not the end of our journey.
<presentation> Self-acceptance and self-care are the beginning of a healthier and more fulfilling existence.
From A Delicate Balance: Living Successfully with Chronic Illness, by Susan Milstrey Wells (Insight Books, 1998). ©Susan Milstrey Wells. All rights reserved.
-------PRESENTATION ENDS----------
--------------- QUESTIONS & ANSWERS BEGINS ----------------
<icnmgrjill> SUSAN, WHEN I READ YOUR WORDS, THEY FEEL SO PEACEFUL AND SO COMFORTING TO ME!
<SusanWells> Seeing them posted made me feel wise...
<icnmgrjill> HOW DID YOU FIND THIS WISDOM IN LEARNING ABOUT YOURSELF AND CHRONIC ILLNESS?
<SusanWells> But I'm coming here tonight as a person who struggles with this issue everyday. When I began writing my book, I was still quite angry about being sick, even though I have lived with health problems for half my life. In addition to IC, I have Sjogren's syndrome, an autoimmune disease that attacks the body's moisture-producing glands, and fibromyalgia, a musculoskeletal disorder that causes widespread pain and fatigue.
<SusanWells> I thought that accepting myself as a person who is sick was tantamount to admitting that I had failed as a human being. Instead, through talking to others who were on the same journey, I discovered the being human MEANS having limitations and flaws, and that as long as I continued denying my health problems, I would never take the steps I needed to get well...
<icnmgrjill> THIS BRINGS UP SO MANY THOUGHTS AND EMOTIONS. ONE THING THAT PATIENTS FACE IS A FEELIING LIKE WE ARE DAMAGED GOODS. WE WORRY ABOUT LOSING OUR SPOUSES, OUR FAMILIES. FOR THOSE OF US WHO ARE SINGLE, WE WORRY ABOUT FINDING SOMEONE WHO WILL LOVE US DESPITE OUR LIMITATIONS. ANY SUGGESTIONS OR COMMENTS??
<SusanWells> I think it's helpful to remember that everyone has limitations. And we have to stop comparing our insides to everyone else's outsides. On the inside, I may feel somehow deficient, but on the outside, I'm as competent and capable, as other people seem to me...
<icnmgrjill> ITS MORE THAN JUST ATTITUDE, ISN'T IT? IT'S SELF CONFIDENCE AND???
<SusanWells> Well, attitude is a big part of it. But I don't mean that in a "don't worry, be happy" way. Sometimes we have to worry, and that's OK. But while we don't have control over our disease, we do have control over how we feel about it. I know this sound difficult to accept, but many of the people I interviewed were severely disabled by many different diseases. They convinced me that acceptance is really a very practical way to live.
We need to use the limited energy we have many days to focus on getting well. And we don't want to drain the energy of those we depend on, which is why support from a group like this is so important. If I can give you an example. The fact that acceptance isn't about the future has been a huge stumbling block for me. Acceptance is only about today. But on a day when I don't feel well enough to write, I will plod on through, getting little done.
The few times I've allowed myself to take a nap or a walk, I've been much more productive later in the day. My fear, of course, is that I will need to sleep, rather than work, everyday, but that simply is not borne out by the facts.
Accepting how I feel TODAY, allows me to take care of myself when I need to. Tomorrow might be a better day. Obviously, that word is productive!
<icnmgrjill> ONE OF THE THINGS THAT I'VE NOTICED AS A SUPPORT GROUP LEADER IS THAT SOME WOMEN HAVE A DOUBLE STANDARD. THEY DON'T GIVE THEMSELVES PERMISSION TO STOP AND REST AND, ALMOST WEEKLY, END UP IN WORSE SHAPE. BUT, THEY FEEL THAT THEY MUST BE SUPERMOM AND THAT THEY HAVE TO WORK *EXTRA* HARD TO STILL STAY THE MOM AND THE WIFE.
<SusanWells> As soon as you said double standard, I knew what you were going to say. It's very difficult for women to do so, but we must learn to set limits. First of all, this means we have to accept the fact that we do have limits we need to respect. We can start by learning to say "no." I know it's hard to do so and not feel guilty, but it gets easier!
My friend Wendy, who has MS, has learned to let people down gently. When she can't do something she's asked, she's learned to say, "I can't DO that for you, but I will BE THERE for you." If we don't begin to accept our own limitations, our family and friends will have a hard time accepting that we are sick and need to take care of ourselves. I say that I don't feel well, but then I do what I planned anyway. Sort of like the "woman who cried wolf!"...
<icnmgrjill> LISA G HAS THE FIRST QUESTION. SHE WANTS TO KNOW HOW WE CAN MORE EFFECTIVELY DEAL WITH THOSE IN OUR LIVES WHO FAIL TO UNDERSTAND OR ACCEPT IC AND THEN PLACE UNREASONABLE EXPECTATIONS ON US?
<SusanWells> That depends on part on how important the relationship is. I like to think of my energy like money in the bank. I need to save it to spend it, and when it's gone, I need time to recoup it again. I've learned to save my energy in part by only explaining myself in full to the people who really need to know. That includes spouse, children, and close friends. To folks I talk to in church or in the store, I'm less likely to spend any of my energy talking about or explaining my health problems.
In terms of the "unreasonable expectations," we probably need to teach others what they can expect of us. That goes back to learning ourselves what we can and cannot do. But since it varies from day to day, that can be hard. I hope this helps a bit...
<icnmgrjill> THANK YOU! OUR NEXT QUESTION IS FROM RUSS. HE WOULD LIKE TO KNOW IF MEN AND WOMEN COPE WITH ILLNESS DIFFERENTLY? IF SO, HOW?
<SusanWells> Yes, I think they do. Most of the people I interviewed were women, since many chronic illnesses strike women disproportionately. I think men may be less likely to seek the kind of support that a group like this can provide, so I'm glad you're here, Russ!
<SusanWells> The impact on employment can be especially hard for men, if they are the family breadwinner. Men are used to being strong, so illness can be particularly hard on their self-esteem...
<icnmgrjill> TERRI WOULD LIKE TO KNOW WHAT YOU MEAN BY CHRONIC ILLNESSES STRIKING WOMEN DISPROPORTIONATELY
<SusanWells> For example, 90% of people with lupus and Sjogren's syndrome are women. 70% of people with MS are women.There's some interesting research going on now about the role of female hormones in the development and course of autoimmune diseases. Oops, I left out the obvious. Most of us with IC are women, too!...
<icnmgrjill> SUSAN, THE NEXT QUESTION IS FROM MATTSMOM. SHE WANTS TO KNOW WHAT THE DIFFERENCE IS BETWEEN FIGHTING AND USING OUR ENERGY TO GET WELL?
<SusanWells> Good question. I think of fighting as involving a lot of anger and denial. Using our energy to get well is a positive use of energy, rather than negative. I'm sure we've all heard the old saw that it's easier to lose weight when we accept the shape our body is in. We tend to sabotage our attempts until we come to terms fully with the changes in our lives (Or in our bodies!)...
<icnmgrjill> HARD TO DO THOUGH. I THINK THAT PAIN PROVOKES FEAR.. AND THAT FEAR PROVOKES ANGER TOO.
<SusanWells> None of this is easy, and I struggle with it everyday myself. Absolutely. And not all anger is bad. If we turn it inward and become depressed, we can't use it, but if we turn it outward and seek positive change, it can motivate us.
<icnmgrjill> HERE'S AN ANONYMOUS QUESTION FROM THE FLOO. I AM THE SPOUSE OF AN IC PATIENT.. AND FEEL HELPLESS. I DON'T KNOW HOW TO HELP MY PARTNER WHEN THEY ARE IN BAD SHAPE. HOW CAN I HELP HER NOT BE SO HARD ON HERSELF? AND HOW CAN I DEAL WITH MY ANGER THAT THIS IS NOT THE LIFE I EXPECTED AFTER I GOT MARRIED?
<SusanWells> To help her, I think you need to know what she expects from you. She may not want you to solve the problem for her, but just listen to what she's telling you. I've learned to say to my husband, I need you to listen to what I'm saying, and tell me how hard that must be.
<SusanWells> It felt really awkward to him at first, but now he appreciates knowing what I need. The second part if tougher. One thing it might help for the two of you to do together is make a list of all that you have lost because of IC, and take time to grieve each one...
<icnmgrjill> EXCELLENT ANSWER.. UNDERSTANDING THAT IN MANY WAYS.. OUR LIVES CHANGE AND TRANSFORM AS WE GROW WITH EACH OTHER AND THAT ONE OF THE GIFTS THAT WE OFFER TO OUR PARTNER IS THE CHANCE TO HELP AND COMFORT WHEN THEY NEED IT AND TO ACCEPT THAT LIFE IS ABOUT, SOMETIMES, ADJUSTING EXPECTATIONS TO THE SITUATION.
<icnmgrjill> SUSAN. YOU DISTINGUISH ACCEPTANCE AS A DAILY MOMENT. ITS NOT THAT WE'RE ACCEPTING A "LIFE OF IC" AT ALL.. ITS MORE ABOUT ACCEPTING THAT, AT THIS MOMENT, I NEED TO DO THIS.. OR THAT, RIGHT? BECAUSE WE MAY HAVE THE CURE VERY SHORTLY.
<SusanWells> No, this is very much a "one day at a time" philosophy, for those of you familiar with the 12-step program. We never have to give up hoping for a cure, but we have to focus on what our lives are like TODAY. If TODAY you have IC, what do you need to do TODAY to take care of yourself. That will vary from day to day, or hour to hour even. As I like to say, BEING SICK IS HARD WORK! But you will learn much about yourself in the process.
If I can offer one further example, I think it's so important to understand that acceptance doesn't mean giving up. To help me understand this, my friend Sally, who has chronic fatigue syndrome, used the analogy of a maze. Getting sick is like hitting a dead end. The path we expected to take is no longer available. We can try to knock through the wall and become sicker. We can quit. Or we can adjust our thinking and find a new path. "Acceptance doesn't mean we're surrendering," Sally told me. "It just means we're advancing in a new direction."...
<icnmgrjill> FROM YOUR INTERVIEWS, DID YOU ISOLATE A FEW CHARACTERISTICS FROM PATIENTS WHO WERE DOING WELL WITH ACCEPTING THEIR DISEASE? WHAT CAN WE LEARN FROM THEM?
<SusanWells> Yes. They taught me that I don't have to understand everything. I always want to know "why?" But I don't have to know "why" I have IC or Sjogren's syndrome or FM to start focus on getting better. They also taught me that I don't have to conquer my disease. I can learn to co-exist, more or less peacefully with it. They also impressed on me the need to laugh! Laughter is wonderful medicine. It's safe, nontoxic, and fun, and all we have to lose is a bad mood! And they taught me that my struggles to deny my illnesses were keeping me from doing what I needed to do to get well.
No matter hard I might wish for the sky to be purple, one of them told me, the sky will still be blue, and I will be angry about it!...
<icnmgrjill> SUSAN.. I KNOW WE'RE REACHING YOUR TIME LIMIT! CAROL HAS ONE LAST QUESTION. SHE IS LOOKING FOR SOME WISDOM ON DOCTORS AND HOW TO WORK WITH DOCTORS WHO SEEM TO BE ONE OF OUR GREATEST SOURCES OF STRESS, YET WE HAVE TO BE WITH THEM. WHAT CAN WE DO TO NOT GETSO STRESSED ABOUT OUR RELATIONSHIPS WITH OUR DOCTORS?
<SusanWells> To begin with, I always tell folks that if you ever hear the phrase "It's all in your head," or the equivalent, it's time to find a new doctor! We need a doctor who is willing to answer our questions, to guide us but let us make the final decisions, and who believes in our ability to get better.
In return, we must educate ourselves about our disease, be assertive but not aggresive, and trust our instincts. We can get as much information and as many opinions as our energy and our resources allow. But in the end, the final decision about our health carte is always up to us...
<icnmgrjill> {{{{{{{{{{THANK YOU SUSAN}}}}}}}}}
Special gratitude to Julie Halbur for coordinating this exceptional presentation.
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© 1999, The IC Network, All rights reserved. This transcript may be reproduced for personal use only. If you do so reproduce, we ask only that you give credit to the source, the IC Network, and speakers, Susan Wells and Jill Osborne. For additional use, please contact the ICN at (707)538-9442.