"Do you need some help?"

I was carrying two bags of trash from my third-story apartment to the dumpster outside, and one of my male neighbors had reached the front door at the same time as me.

I met his gentlemanly offer of assistance with a genuine smile and breezy "Thanks!" Then I and my twin Hefty bags carefully navigated our way around him as he politely held open the door.

Later that day I gratefully watched my friend Tim install my mondo-heavy window-unit air conditioner. He hefted; I moved things out of his way. He wielded his cordless screwdriver; I stood by in silent tool envy. He wedged a block of wood in the window as a final securing touch; I clapped my admiration and appreciation.

I relay these stories to show that I can accept help from the male of the species. Really. I also share them as exhibits A and B in my case of confusion over being labeled "too independent" by several other males of the species. I've heard this specific accusation from male friends of mine, and I've also been a general recipient of this indictment from male readers of this column who write in to complain about women being "too independent these days."

Too independent? In some ways that seems like a contradiction to me. Like being too tidy or too happy. What's so wrong with it? Aren't there like a gazillion worse things to be too much of?

Sure, I admit one of the best lessons I learned in my twenties is that too much of an "I'll do it myself" attitude can lead to a lonely existence - lots of solo accomplishments and no one to admire them or share them with. I now view asking for help not as a sign of weakness, but as a sign of wisdom about my abilities and limitations and about the beauty of interdependence.

And I'll admit that over a decade of having to fend for myself has prompted me to meet a few offers of "Can I help you with that?" with a confident, "No thanks, I've got it." Though I can't expect the polite offerers to know this, my main motivation for that response is more habit than raging independence. I'm just used to hefting, schlepping, opening, and fixing things for myself. And I'm trying to step back and graciously accept these offers more often than not.

I also recognize that women's roles have shifted markedly over the past generation or two. In my parents' generation, most women went right from their father's home to their husband's home. Their educational and work choices were somewhat limited. I was shocked when I heard my mom explain that when she went to college, the main options for women were nursing, education, and home economics.

Mere decades ago, women's financial, professional, relational, and political security rested mainly in the hands of their husband. I often forget that my ability to have a career and ministry pursuits, an existence several states away from my parents, my own car and solo apartment, my own bank account and 401K are largely new freedoms.

It stands to reason that all these changes and advances also have affected the way men and women relate with one another. Some women say men are intimidated by the strides we've made as a gender, by the new-and-improved modern woman who enters relationships with more education, financial freedom, work experience, and yes, independence to offer. Instead of intimidated, I'd like to think (or at least hope) men are simply confused about how to relate to us in these changing roles.

Another key lesson of my twenties is that men need to feel needed. By and large they like to have a specific role to fill, a specific task to perform. And with women filling more roles and performing more tasks on their own, I can see how that would lead to confusion in men … as well as lead them to leave our circles to go off in search of places where there are roles to fill and tasks to perform.

But this departure & the dating dearth and postponement of marriage that surely are somewhat related to this trend, have forced me and my female counterparts to be even more independent. Not always because we want to be, but sometimes because we have to be.

As a never-married 30something, I'm not going to sit back and let everything from my finances to my temperamental toilet go untended. I'm going to learn these new skills, make advancements in my career, buy my own car and condo, invest in a retirement plan. Putting life on hold until marriage doesn't seem like a good or God-honoring option.

Plus, I'd like to think these strides, skills, and accomplishments are good things when it comes to romantic relationships. Look at all the extra things I and my female counterparts bring to the table now. Men don't have to carry the weight of our security and identity anymore. Surely that's a welcome relief.

But instead of being seen as more well-rounded and less needy, often I'm just called too independent. And I'm not even exactly sure what that means. Am I supposed to still be living at home? Am I supposed to leave stuff around my apartment that breaks in a state of disrepair instead of going in search of my wrench or duct tape? Am I supposed to pass up a church leadership opportunity so that a man can fill it instead? Am I supposed to ask for assistance each time I need to heft my groceries up the three flights of stairs to my apartment? What does a "just right" level of independence look like?

Just because I do many things for myself doesn't mean I wouldn't gladly step aside and let a man do some of these things for me. I recognize there are things men are, on average, better at than women. I welcome their skills, abilities, know-how, strength, and intelligence. In fact, I'd be their biggest cheerleader and admirer in these things if we could simply find a way to come together and become a mutually beneficial "we."

Even if I would go so far as to say I don't need a man, wouldn't it be enough that I still want one in my life? Isn't a peer better than a "cling-on"? Isn't it a good thing that women now come with financial independence, careers, greater intelligence, and possibly even a few power tools?

To be honest, there are moments when I'm a bit tired of being both the woman and man in my household, of having to be an expert - or at least competent - at everything that needs to be done. I'm guessing guys are too. Surely we who understand how the Body of Christ is supposed to function - as people offering our gifts and strengths to the common, interdependent whole - can figure this out.

At times I suspect "women are too independent" is a cop out for men, much in the same way "men are intimidated by modern women" is for women. While there are probably kernels of truth in both statements, neither comes close to acknowledging the sociological, demographic, and relational changes afoot when it comes to gender roles. Maybe it's time we all dropped our excuses, however valid or not they may be, and together try to navigate a new healthy way for men and women to relate to one another.

So here I am admitting I need help. I need help from men to understand what "too independent" means and what I can do differently to let you know I really do value your strengths, abilities, and assistance. (Really, I'm hoping you'll e-mail me and let me know.)

I need those of you who are wary of these changes to even consider it a good thing that women bring more to the table in relationships these days. I need the women who take these new freedoms to the extreme and who live by an "I don't need no man" attitude to rethink how you view our brothers.

And I need God's help, to know how to navigate these tricky waters, how to respect others even in the midst of frustration, when to be strong and when to lean on others, when to stride ahead and when to stand back and applaud the menfolk in my life.

source site: click here

Dealing Constructively with Sensitivity Issues

Combining Warmth with Understanding

While focusing on someone not present

1. While focusing on a photo or on a thought of a close family member toward whom you have positive feelings or, if you have no such person in your family, while focusing on a photo or on a thought of a close friend

Recall your partner not taking you seriously when you said his or her behavior was upsetting you

• Remembering how you felt, focus on your close relative and consciously decide, "I shall take you seriously, because you, your words, and your feelings are real, as in my own case when I said I was full or upset."

• Affirm your decision, by repeating after the group facilitator, or by saying aloud by yourself,"I shall take you seriously."

• Let the decision sink in and focus on feeling combined warmth and understanding toward the person

Recall a sibling or friend being afraid to comfort you when you were upset

• Remembering how you felt, focus on your close relative and consciously decide, "I shall not be afraid to respond to you if you need me. Although I may contribute to your success or failure, I am not the sole source affecting your situation, as with my sibling or friend whose comfort I needed."

• Affirm your decision aloud, "I shall not be afraid to respond to you if you need me."

• Let the decision sink in and focus on feeling combined warmth and understanding toward the person

Recall your mother accusing you of irresponsibility when urgent business prevented you from doing the shopping before the store closed

• Remembering how you felt, focus on your close relative and consciously decide, "I shall take in all the information about your situation, without jumping to conclusions. I shall do this because I wish to avoid overreacting or responding to something I have merely invented, like when my mother imagined I had forgotten the shopping."

• Affirm your decision aloud, "I shall take in all the information about your situation, without jumping to conclusions."

• Let the decision sink in and focus on feeling combined warmth and understanding toward the person

Recall your partner accusing you of not loving him or her any longer when you criticized something he or she did

• Remembering how you felt, focus on your close relative and consciously decide, "I shall keep sight of the larger context of our relationship so as not to jump to a false conclusion over a tiny incident, like my partner did when I criticized his or her behavior."

• Affirm your decision aloud, "I shall keep sight of the larger context of our relationship so as not to jump to a false conclusion over a tiny incident."

• Let the decision sink in and focus on feeling combined warmth and understanding toward the person

Recall a relative offering to drive you to the airport and then coming so late that you missed the plane

• Remembering how you felt, focus on your close relative and consciously decide, "Once I have decided to do something for you, I shall act straightforwardly. I shall do this because you experience your problem as something urgent, as I did when I needed to catch my plane."

• Affirm your decision aloud, "Once I have decided to do something for you, I shall act straightforwardly."

• Let the decision sink in and focus on feeling combined warmth and understanding toward the person

Recall your mother correcting the way you were chopping vegetables

• Remembering how you felt, focus on your close relative and consciously decide, "I shall refrain from offering my unneeded or unwanted help, opinion, or advice. I shall do this because I do not wish to exploit you to gain a feeling of self-worth or of being needed, or to feel more secure by taking control of things, as with my mother who could not resist correcting how I chop vegetables."

• Affirm your decision, "I shall refrain from offering my unneeded or unwanted help, opinion, or advice."

• Let the decision sink in and focus on feeling combined warmth and understanding toward the person

2. While focusing on a magazine picture of an anonymous person

• Decide, "I shall take you seriously, like when preparing a hospital patient for an operation."

• Affirm you decision aloud, "I shall take you seriously."

• Let the decision sink in and focus on feeling combined warmth and understanding toward the person

  • Decide, "I shall not be afraid to respond to you if you need me, like when teaching a baby to walk."

  • Affirm your decision aloud, "I shall not be afraid to respond to you if you need me."

  • Let the decision sink in and focus on feeling combined warmth and understanding toward the person

• Decide, "I shall take in all the information about you and not jump to conclusions, like when examining a child with a bruised arm."

• Affirm your decision aloud, "I shall take in all the information about you and not jump to conclusions."

• Let the decision sink in and focus on feeling combined warmth and understanding toward the person

• Affirm your decision aloud, "Once I have decided to do something for you, I shall act straightforwardly."

• Let the decision sink in and focus on feeling combined warmth and understanding toward the person

• Decide, "I shall refrain from offering unwanted or unneeded help, as when insisting on feeding the two-year-old with a spoon."

• Affirm your decision aloud, "I shall refrain from offering unwanted or unneeded help, opinion, or advice."

• Let the decision sink in and focus on feeling combined warmth and understanding toward the person

3. Repeat the procedure while focusing on a photo or on a thought of someone with whom you have a difficult relationship

While focusing on someone in person

1. While sitting in a circle with a group

• While focusing on each person in turn at each step and directing the appropriate feeling at him or her, repeat after the group facilitator, or say aloud by yourself, the key sentences
  • "I shall take you seriously."

  • "I shall not be afraid to respond to you if you need me."

  • "I shall take in all the information about you and not jump to conclusions."

  • "Once I have decided to do something for you, I shall act straightforwardly."

  • "I shall refrain from offering unwanted or unneeded help, opinion, or advice."

• With each person at each step, let the decision sink in and focus on feeling combined warmth and understanding

2. Repeat the procedure while focusing on a partner

• One of the pair repeats to himself or herself the 4 key sentences used in the circle, while focusing on the decision
  • The person repeats the sentence aloud as an assurance to the other, while focusing on feeling combined warmth and understanding

  • The speaker focuses on feeling that the person accepts and trusts the assurance

  • The listener focuses on feeling, accepting, and trusting the speaker's warmth and understanding

• Switch roles
  • For each of the 4 key sentences, the partners alternate: first one, then the other gives the assurance, with both persons focusing on the mutual generation and acceptance of combined warmth and understanding

While focusing on yourself

1. Repeat the procedure while looking in a mirror, by substituting the key sentences

• "I  shall take myself seriously."

• "I  shall not be afraid to respond to what I see or feel in myself, if needed."

• "I  shall consider all the facts about my situation, without jumping to conclusions."

• "Once I have decided to do something about my situation, I shall act straightforwardly."

• "I  shall refrain from pushing myself to do something unneeded."

3. Repeat the procedure without a mirror

4. Repeat the procedure while looking at photographs of yourself spanning your life, by substituting the key sentences

• "I  shall take myself seriously as I was then."

• "I  shall not be afraid of dealing with how I feel about myself then, if needed."

• "I  shall consider all the facts about my situation then, without jumping to conclusions."

• "Once I have decided to do something, I shall act straightforwardly to deal with unresolved feelings."

• "I shall not push the impossible; I shall forgive."

source: click here

That teenage feeling

Harvard researchers may have found biological clues to quirky adolescent behavior.

By Erika Packard
Monitor Staff
Print version: page 20

Wondering What's in Her Head....

kathleen howe

I know you can understand what I'm talking about when I offer you the title of this article... I know you've wondered what's in your mother's head before. I know you've pondered upon her statements, decisions & rituals, just as most of us have. Why does she think the way she does?

Why does she do the things she does? If you've pondered these things before, I can almost count on you being over the age of 30. I believe that before the age of 30, we're most likely wondering about ourselves, why we think the things we do. But somewhere along the timeline of "not so young adult" and "midlife" we begin to ponder things about our parents.

I think that we begin to get the "greater picture" that we are not all inclusive of ourselves as an individual, but we're a "product," a combination of our parents, and other life factors that we encountered along the way. We begin to wonder why we are the way we are, and we begin to look for someone to blame our faults on, our negative traits on & all other dysfunctional life experiences on. We simply don't want to take personal responsibility for what we've done to ourselves!

I admit that I've spent the better part of my 40's trying to figure out who I am, why I am who I am, and discover what the hell an "inner child" is!

But, now that 50 is merely a slight turn into my very close future, I've leaned not upon my own understaning of my mother's past thoughts, beliefs and ways of doing things and I've begun to see her for who she's turned out to be. It's a very nice picture, that makes me wonder, "What's in happening in her head?"

Once again, I'm wondering about her, I'm wondering why she feels "unneeded." That seems to be her main concern with her life as I approach 50 and she approaches 70 years of age. After all, she's the mother of three grown children, grandmother to 13 grandchildren and very recently, has become a great-grandmother! How can a woman with so many little dependencies underneath her, feel "unneeded?" 

So, I've put on my pondering pants, because this subject is so deep, I'm sure I'll need my "high risers," "peddle pushers," or "capri pants" as they call them today, to keep from getting to dirty in all the muck I've gotta rake!

It wasn't that long ago, maybe a year or so that my mother announced to me that she was putting her house in south Florida up for sale. She'd been beaten badly, living in Ft. Pierce, Florida by several hurricanes and she'd found that living in south Florida wasn't as fun as it used to be. As soon as the blue tarp came off her roof, meaning the roofing company had finally after almost a year, finished re-roofing her house, she put the "for sale" sign up.

Within 48 hours she had an acceptable offer on her house. It was all happening too fast for me. I someone felt as though I was now the parent and she was the wandering teenager that I had once been in the 70's when I announced I was off for Colorado for an undetermined span of time, to go looking for America...  because now, she was telling me that she was going to leave Florida to go live in Wyoming of all places!

My very social, poker playing, golfing, church going, bell ringing, multi credit card carrying, shopaholic mom was going to live in a state that had one of the least populated land areas in the US. I wasn't sure, but I began to think that she was showing signs of either Altzheimer's or demetia.

She was packing it up to go clean house and "be home" for my younger sister and her two remaining teenage boys living at home. Somehow this wasn't registering in my "memory warehouse" too nicely, there wasn't a file cabinet labeled, "Mom's wildest adventures!" 

It was easier for me to believe, that she'd been watching the Discovery Channel's program on the next big sunami. You know, the big sunami that could hit the east coast once this big chunk of land falls into the ocean over in Africa! It's an awesome show, just don't let your mother watch it!

My mom had spent the better part of her life in Florida, I think about 15 years, taking care of her parents. They had moved there from upstate New York when my grandfather was diagnosed with Altzheimer's. My mother converted to catholicism as her father had always been a devout catholic, and she took very good care of the two of them for the remaining years of their lives.

My mother, being the oldest of 4 girls in her family and the only single one at the time, decided to take on the responsibility herself. She moved from her cherished New England, leaving all her Boston train friends, her ski chalet, and her favorite lobster haunts to live in the warmer climate, and devote herself to her parents' needs for however long they needed her. I was so proud of her when she decided to do it. It's the one thing I can honestly say about my mom, that I am really, really proud of.

After both of her parents died, within a few years of each other after they were married for over 60 years... my mom felt uneasy. I knew this was very true. My oldest daughter, now 28, kept her busy though. She had lots of friends as well. She had poker night with her girlfriends, traveling on many cruise vacations, and golf. She loved the weather, and my sister lived in the same town as well. Until, that is, a few years ago when she moved to a tiny little town 45 miles south of Jackson Hole, Wyoming. She and her second husband moved there to build the house of their dreams on a 10 acre plot.

Now there isn't a much needier person than my oldest daughter. She's independently needy. (read the article above about single girls! hahaha) That's my exact description of her. She has lived alone for a very long time now, and she likes to do things, "her way," but she's also one of the earliest forms of "drama queens" out there, being of that certain age, (her generation afforded us "valley girls" & 90210) that requires a stable "sounding board" for every decision to be made! Not only are decisions difficult to deal with, there has to be someone who can listen, quietly, to each and every detail of each and every adventure she partakes of! as well as the descriptive tirades covering her emotions & feelings of each said adventure as well!

Now that my mom's parents were gone, and she was retired from the Law Office she had worked for, she had all the free time in the world to be that very "needed" person for her granddaughter!

I can honestly say that my mom chose cleaning the "dream house," watching over the "St. Bernard dog, hound dog & very large cat" and living in the mother-in-law apartment over the garage, out in the middle of no man's land over being that sounding board. Hmmmm... I wonder why....

Still... after pondering all this info, I've come to the conclusion, that although my mother has always appeared to have been "happy," I guess she wasn't. I think she's still looking for happiness. Why else would she move all her furniture half way across the world at her age? Although her claim has been that she believes that she's the "most needed," out there in God's country.... she's actually the most "free" living out there.

She can hop on a plane anytime and go anywhere she wants to. She can get on a bus with a group of other "golden girls" and go off gambling and drinking free martinis in Nevada whenever she gets the whim to do it! She's looking for new friends, new adventures, new possibilities and opportunities now. She's almost 70 years old and she's humming Simon & Garfunkel's song....  "I'm off to look for America...." just like I was as a teenager.

Someone once told me that when our parents get older they revert back to children. Could this be happening? Is my mother beginning her actual teenage years now before going backwards even further into childhood? Is she finally sowing her wild oats that she needed to sow the year she got married at 19 and had me at 20? Could she be looking for a soul mate?

Wow... this pondering is really earth shattering... my mom & her soul mate, trekking off across route 66 in a motor home? Maybe that's the kind of "unneeded" she's been feeling. Maybe she's feeling, "unneeded" by a man, and she's tired of that feeling after being divorced for over 30 years. Hmmm... I guess I'll take my own good advice, open my mouth and ask her someday...

The Patient's Guide to Chronic Fatigue Syndrome & Fibromyalgia 

Chapter 15: Improving Relationships and Building Support

Chronic illness creates stresses for most relationships. Relations with family, friends, coworkers and bosses, and even doctors are altered in ways that suggest that the area of relationships is another in which the limits imposed by illness can create new challenges for both patients and those around them. The discussion in this chapter outlines 8 common relationship frustrations faced by people with CFS and fibromyalgia and suggests strategies for dealing with them.

Frustrations & Solutions

Not Feeling Understood
Perhaps the most common relationship frustration is not feeling understood and not being believed when we say we are ill. Since CFS and fibromyalgia are invisible illnesses, we sometimes have trouble convincing others that we are sick and, in fact, have a serious illness.

Some people may respond to us with statements like, “But you look so well” or “I get tired, too.” We may be on the receiving end of well meaning, but unsolicited, advice. In sum, getting others to understand and accept our situation can be a major challenge.

Part of not feeling understood may be due to poor communication. For ideas about dealing with this frustration, see the section titled “Improving Communication” later in this chapter.

In addition to working on better communication, I suggest you consider using different strategies with different people. Some people you deal with may not need to understand your medical situation. For example, if you want to use a scooter at the grocery store, it is probably sufficient just to ask whether one is available, without explaining your medical condition. If someone calls to ask you to volunteer, it may be enough to say that your situation does not permit you to help out at this time.

Friends are in a different category. CFS and FM patients are sometimes successful in educating others about their illness, but most put limits on their efforts. If you think talking to others about your illness would help them to be more understanding and supportive, you might discuss it with them or give them something to read. The CFIDS Association of America has a brochure titled For Those Who Care, which is available from them and also can be downloaded from their web site: www.cfids.org. The Arthritis Foundation has a similar brochure for fibromyalgia.

Patients who have tried educating the people in their lives report that this approach often requires patience and is not always successful. They have experienced positive responses at times, but have also concluded that some people may never understand or be sympathetic.

As one person in our program said, “When I was first ill, I tried to educate everyone about CFS. Over time I came to see that some relationships were more central to my life than others. I also concluded that some people might never understand. I still make efforts to educate, but I’m more selective about whom I approach and I’ve accepted that some may never understand.”

The situation is different with medical providers. It is reasonable to expect that your doctors believe your illness is real, know about your illness or show a willingness to learn about it, and treat you with respect. For suggestions on how to find understanding and sympathetic medical care, see Chapter 5.

Consider using the 4 guidelines offered by Dr. Julie Silver. She suggests that you:

1) tell your children the name of your condition;

2) explain something about the illness (for example, that it is not contagious and not anyone’s fault);

3) describe the expected course of the illness (that it is likely to continue, but will be manageable); and

4) outline its effects and reassure them of your commitment to them (that you still love them despite being ill, and will do what you can, even though your activity level may be limited by the illness).

A final strategy for reducing frustration from not feeling understood is to create new sources of support in your life, including from fellow patients. See the section at the end of the chapter called “Building Support.”

Pressure to Do Too Much
Because of a lack of understanding or for other reasons, others may pressure us to do more than our bodies can tolerate. Feeling sick and being dependent makes it much more difficult to be assertive. Sometimes we adopt others’ expectations for ourselves as our own and make our situation more difficult by pushing ourselves too far. Guilt over not being as active as we and others would like can feed into our doing too much.

Pressure to do more than is healthy can be addressed both through changing our expectations for ourselves and by being assertive with others. Often we impose unrealistic expectations on ourselves. An approach to overcoming this difficulty is to define our limits, as described in the chapter on the energy envelope, and then to gradually learn to live within them, as outlined in the chapter on pacing.

The adaptations are both mental and physical. As described in the section “Mental Adjustments” in Chapter 13, we need to redefine our expectations for ourselves, adapting them to our new limits. Also, we can profit by making activity adjustments as described in Chapter 10. These changes may include using short activity periods, spreading activity through the week, and integrating rest into our lives.

Assertiveness means setting safe limits for oneself, then communicating them to others. Make clear to yourself and to others the consequences of your trying to meet old expectations: intensification of symptoms and postponed improvement. Be as specific as possible in asking for help if others offer assistance. For example, you might ask if they would do grocery shopping, make a phone call, or drive you to a medical appointment.

It can be difficult to be assertive if you feel dependent or fear abandonment. If that’s the case for you, it may help to practice saying your request to yourself or someone you trust before making it to the person whose help you want. In presenting your request, it may help to acknowledge that you understand the other person’s situation. You might say something like, “I know my illness makes your life more difficult and that some things I say and do may be frustrating.”

One student in our groups was able to communicate her limits to her family using a 1 to 10 scale. In her system, a 1 meant “as good as I used to be before I got sick” and 10 means having to stay in bed all day. If her family asks her to do something or to go somewhere, she may respond by saying “No, I can’t; it’s a 7 day.”

She has found this practice both helped her family understand her situation and helped her learn pacing. Here are other thoughts about limit setting from people in our program.

Setting boundaries and keeping them set are big challenges for me. For years I have had “welcome” tattooed on my forehead, as if I were a doormat.

When invited by friends and family members to come over or do this or that, I am honest with myself and decline such invitations if I know I am not up to the certain activity. I just give a simple explanation that “it might be too much for me today” or “I am not up to doing that at this time” and let it go at that. I have found that telling the truth is so much better on both sides than accepting the invitation out of guilt and suffering with it.

The Loss of Relationships
With serious illness, you have less energy for everything, including relationships. This basic fact about CFS and fibromyalgia makes it likely that some relationships will change or even end. This is one more example of how the limits imposed by illness force us to be selective in what we do and to set priorities.

I suggest that, in the face of limits, you practice relationship triage: a conscious and deliberate process of making explicit decisions about whom to include in your support network, concentrating on the more valuable or necessary relations and letting others go.

One place to start your evaluation of your support network might be with the fact that CFS and fibromyalgia can make you feel more vulnerable to those who are negative or demanding. The cost of spending time with such people may be great enough to convince you that relationships with some people should be limited and relations with others are not worth maintaining.

You might think of your relationships as a series of concentric rings. In this scheme, the inner ring contains the most important people in your life, typically family and closest friends. People on the outer ring are casual acquaintances. In between there may be one or two other rings of people with varying levels of importance. You may develop different approaches to people in various rings, concentrating on those in the inner ring. Relationships on the outer rings may be easier to let go of.

The approach being suggested is summarized by Dr. David Spiegel of Stanford, who writes about relationships and chronic illness as follows: “Save your energy and use the illness as an excuse to disengage from unwanted social obligations. Simplify the relationships that are necessary but unrewarding, and eliminate the ones that are unnecessary and unrewarding.”

Here are some examples of relationship triage from people in our program.

I have made my circle of friends much smaller. I have excluded people who I feel I have been having one-sided friendships with. It was difficult to let go, as I once valued their friendships a great deal, but I have decided I need to put myself first, which is a new concept to me.

I try to limit contact with hyperactive people, negative people, skeptical people, and demanding people.

Some relationships are just too costly for me, and I need to let them go. If the person is causing me a lot of stress, making no attempt to understand my illness or just taking more from the relationship than giving, I can’t continue to put my previous energy into it. When the person is family, I’ve learned to back away as much as I can, but it may not be an option to completely cut them off.

During a time of loss, it is especially useful to create new relationships, especially with people who understand what you are going through. Getting to know fellow patients can be especially helpful. For ideas about creating new relationships and strengthening old ones, see the section titled “Building Support” later in this chapter.

Another strategy for responding to limits and the loss of relationships is to embrace solitude. Serious illness often forces people to spend much more time alone than before. While some find solitude frightening or boring, illness can provide an opportunity to develop new solitary interests. Some patients, recognizing that they will be spending less time with people, have seen the situation as a chance to do things like reading and art work that they didn’t have enough time for earlier in their lives. See, for example, JoWynn Johns’ article “In Praise of Solitude,” which is posted at our website. Two other students in our program had this to say about having more time alone because of illness.

I have really found that I enjoy having solitude. I never had time to do the things I loved the most. I was always in the fast lane, and by the time I got to do something I was far too stressed to enjoy it.

I actually enjoy spending a lot of time alone. After many years of activity and socializing, it is great to have time to pursue my intellectual interests. I like the luxury of not having to hurry. I read a lot, do simple household chores, watch TV, and work on my jewelry hobby. It is great to have the pressure to produce lifted from my shoulders.

Feeling Undependable
Unpredictability can create relationship problems, as we may not feel confident about making commitments or may be forced to cancel out of engagements, often at the last moment. Being undependable because of the ups and downs of illness increases our stress and creates frustration for others.

You can make a positive response to this problem by moving forward on two fronts. First, by applying strategies discussed in the chapter on pacing, you can smooth out the chronic illness roller coaster, bringing more predictability to your life. Pacing is based on understanding your limits and then living consistently within them. The chapter on the energy envelope offers several ways to determine limits. The chapter on pacing shows how to translate that understanding into a more consistent and predictable lifestyle, reducing the number of times you have to cancel social commitments.

The second strategy for dealing with unpredictability is open communication. People in our program have reported success in discussing their situation with family and friends. They stress that it is helpful to express the value you place on the relationships by saying something like, “I enjoy getting together with you and would like to maintain our friendship” and also to prepare others for possible cancellations by saying things like, “I have an illness with unpredictable symptoms that makes me less dependable than I would like to be.”

Isolation
Having a serious illness often leads to a sense of isolation. The isolation can be both physical, because of spending more time alone, and psychological, because of feeling different from other people.

One strategy for responding to isolation is acceptance. If you have a moderate to severe case of CFS or fibromyalgia, it is very likely that you will have less social contact than before and instead spend more time alone. For ideas about putting solitude to good use, see the discussion of solitude in the section above on loss of relationships.

On the other hand, you may be able to reduce your sense of isolation by adjusting how you socialize. You may be able to keep some relationships alive by substituting phone calls or email contact for in-person meetings or by adjusting the frequency or type of in-person get togethers. For example, instead of going out, you can ask people to visit you at home. Or you may get together for shorter periods of time than before, in quieter surroundings or with fewer people at a time.

A strategy for dealing with the sense of feeling different from other people is to build friendships with fellow patients, people who understand you because you share an illness in common. For suggestions on how to meet CFS and fibromyalgia patients, see the discussion of support groups and classes in the section on “Building Support” later in the chapter.

Guilt
Guilt is a common response to having CFS or fibromyalgia. We may feel guilty about not being able to work, thus depriving our family of income, or about not doing as much at home as we used to. Living in a society that emphasizes productivity, guilt about doing less than before is common. It is appropriate to look at your situation in a realistic way. If you live with others, your illness probably has caused a redistribution of responsibilities in your family. But it is also helpful to remember that you are not sick by choice and illness has imposed limits on what you can do.

Guilt is one response to the losses imposed by illness. (For ideas on working through loss, see the next chapter.) You can turn feelings of guilt to positive use if you use them as a motivation to take good care of yourself. Strategies such as pacing, getting adequate rest, taking medications and controlling stress can help you improve so that you contribute at home to the extent feasible.

Another positive response to guilt is working to improve communication within your family and, if you work, with your employer. For some ideas, see the section “Improving Communication” later in this chapter.

Finally, consider developing new interests, as described in the next section.

Feeling Unneeded
If we are not as active as before and others step in to take our former roles, we may feel unneeded. Not feeling needed is part of the grief experience triggered by loss. Coming to terms with loss and moving beyond it to build a new life is one of the greatest challenges of long-term illness.

Serious illness brings pain and suffering, but it also offers the opportunity to reevaluate your life and to recast it in a new way. Some patients come to see their illness as a spiritual journey. Students in our program have often told us that while they would not have chosen to be ill, they consider themselves better persons because of it. Being ill challenges us to find new meaning in response to a situation of pain and loss. By developing a new self-understanding, new relationships and new ways to contribute, we can respond positively to the challenge of loss. (For a more thorough discussion, see the section “Creating a New Life” in the next chapter.)

Feeling Dependent on Others
Our limits may feed fears that we will become dependent on others. When we don’t have the energy and independence we once did, we may be fearful that, in the future, we won’t be able to take care of ourselves or that those on whom we depend may leave us.

One response to these fears is to submit them to a reality check. Fibromyalgia is not a progressive disease and the majority of patients improve. While it is true that a relatively small number of CFS patients decline over time, the most common outcomes are improvement or stable symptoms.

Other people often feel helpless when they think about our illness. By giving them something specific to do, you can do them a service while helping yourself. But there are some dangers as well. If you receive more support than you need, the help may reinforce a sense of helplessness. Also, asking too much of one person can lead to resentment and caregiver burnout. For ideas on how to create sustainable support, see the “Building Support” section later in the chapter.

People are often thrilled when I ask for help in clear, practical ways. But I feel challenged to say what I really need without laying heavy expectations on them.

Improving Communication

Serious illness alters dramatically the financial circumstances of most families, forces radical changes in how household tasks are divided up, and drastically reduces the number and scope of activities the family can do together. If you live in a family, a healing approach to relationships can begin with acknowledging to yourself, and then to the other members of your family, how your illness and behavior affects them.

Just like patients, family members, too, can feel isolated and helpless. They may experience loss, because, like you, their dreams may be on hold because of your illness. And they may feel abandoned or feel frustrated at the restrictions on their lives. The unpredictability of symptoms and mood can affect others, as we may cancel plans at the last moment or respond with inappropriate emotion.

One step toward easing strains in your relationships is to acknowledge that your illness creates problems for others. Your symptoms and moods, for example, may make you unpredictable, and your limits may force others to take on additional responsibilities. Express your appreciation for their efforts. Acknowledge that the illness can make you unreliable. Out of respect for other people, warn them that you might have to cancel on short notice. To help maintain the relationship, tell them that you value them and that canceling a get together does not mean you don’t like them.

Take responsibility for the problems your illness creates for others. For example, if your illness makes you moody, make a list of things you can do to help yourself feel better so that you avoid inflicting your moods on others. When you are feeling irritable, you might listen to music, take a walk or have a brief rest.

I have found that identifying my part in miscommunication or a problem is very helpful.

I make time for my marriage. I’ve found that even if I’m too tired for us to do anything, if I just talk with my husband or sit next to him instead of in a separate chair, and pay attention to what he wants to say, then our relationship is much smoother and happier. He in turn is much more thoughtful of my circumstances and my needs.

Poor communication creates frustration in all relationships, whether with family, friends, coworkers or doctors. Working to improve communication can help increase understanding, uncover unrealistic expectations, and aid cooperative problem solving. Here are some general suggestions for achieving good communication. (For ideas on working productively with your doctors, see Chapter 5.)

1. Pick a good time. Select a time for important conversations when both you and the other person will be at your best. Find a time when you will not be distracted by pain or brain fog, and the other person can give good attention as well.

2. Be grateful and respectful. Treat the other person with respect, acknowledging his or her support and effort. Avoid demeaning comments, sarcasm and blaming. Acknowledge your part in shared problems. A healing approach can begin with your pointing out your limits and the things you do that make the other person’s life more difficult. Show appreciation for the other’s efforts.

3. Practice problem solving. Focus on the difficulties caused by your illness, rather than personalizing problems. Think of “gripes and solutions.” Each person describes a complaint, and then you both focus on what can be done to solve the problem. Work on only one or two problems at a time.

4. Test your understanding. From time to time, check whether you have understood the other person’s position by restating it in your own words. Good communication depends on each person’s understanding the other’s views.

Building Support

Because being ill is so difficult, feeling understood and supported is a balm to the soul. Students in our groups report seeking out contact with fellow patients and also valuing the support and friendship offered by others as well. Creating new relationships, especially with fellow patients or others who are empathetic, can be a powerful antidote to frustration in relationships. Also, talking about your illness to friends avoids overburdening your family. And having friends with the same illness may give you the opportunity to help others, which can boost your self-esteem.

A Confidant
It can be especially helpful to have a confidant, one person to whom you can turn for emotional support and an objective view of your life. That person could be your spouse, a good friend, a fellow patient or a doctor or therapist. I was fortunate to have such a friend. We set aside some time on the first of each month to discuss how I was doing. We each assessed my status using the Rating Scale from Chapter 1, and then reviewed my logs for the previous month.

I learned much from the discussions, recognizing patterns I wasn’t able to spot on my own. Just as important, the meetings communicated that I was not struggling alone with my illness, but rather that there was somebody who cared about me and wanted to help me get better. And she said the sessions helped her to feel useful, counteracting the sense of helplessness often experienced by people close to those who are seriously ill.

Support Groups & Classes
Contact with fellow patients can counteract isolation and provide an experience of being acknowledged and supported. Such contact can be a way to feel understood, comforted and inspired. Support groups can provide information, such as names of local doctors who treat CFS and fibromyalgia.

Also, groups offer a way to be helpful, thus counteracting the loss of self-esteem that often results from illness. And, finally, they can offer models of successful coping with illness, thus dispelling fear. Similar experiences are available now on the Internet, at online chat rooms and message boards.

A word of warning: While support groups may be very helpful, not all provide a positive experience. Some groups are negative in tone, reinforcing a sense of victim-hood. Some groups are dominated by one or a few people. Other groups, however, focus on responding positively to illness and insure participation from all members who wish to speak.

I suggest you evaluate your experiences in groups based on the effects they have on you. Contact with fellow patients, especially in a group, can be very powerful. When such contact is negative, it can reinforce isolation and a sense of victim-hood. In a supportive atmosphere, it can be helpful and even healing.

Contact with other patients may leave you feeling upset at times, but the discomfort should be followed by a new perspective on your situation and increased confidence about your ability to manage the illness.

A good group is one in which you feel a sense of belonging, which gives you something positive to take home (either inspiration or practical tips), and which offers models of living successfully with illness.

The CFIDS Association of America maintains a state-by-state list of CFIDS support groups in the United States. They will mail a list of groups in your state at no cost. (You can contact them at 800/442-3437 or email your request to SupportGroups@cfids.org.)

The Arthritis Foundation sponsors fibromyalgia support groups in many places and offers an online directory of their groups at their website: www.arthritis.org. For other lists of fibromyalgia support groups, see the website of Immune Support  (www.Immunesupport.com/supportgroups/) and the site for the National Fibromyalgia Association (www.fmaware.org).

You may also be able to find support groups listed in your local newspaper or locate them through the patient education departments at hospitals, clinics and medical centers.

Self-help classes for people with CFS and fibromyalgia include our Internet course and the in-person Arthritis Self-Help course offered by the Arthritis Foundation. The latter course includes material for fibromyalgia patients.

Professional Support
Psychotherapy helps some people with CFS and fibromyalgia. A sympathetic therapist can provide a confidant’s level of caring and offer an outsider’s view of your situation. If you’re interested, you might look for one who specializes in working with people who have chronic illness. A local support group is often a good source of leads. Therapy can also be helpful for couples. It can offer a place in which the strains created by living with long-term illness can be addressed.

References

Silver, Julie. “Chronic Pain in the Family,” Fibromyalgia Aware: May 2005: 40-42.

Spiegel, David. Living Beyond Limits. New York: Times Books, 1993.

Starlanyl, Devin and Mary Ellen Copeland. Fibromyalgia & Chronic Myofascial Pain: A Survival Manual. Oakland: New Harbinger, 2001.