Perspectives On Friendship

by Joan S. Livingston

"A real friend is one who walks in when the rest of the world walks out."Walter Winchell

There's an old saying that "friends forget those whom fortune forsakes." Before chronic illness strikes, this saying may sound nonsensical: after all, whenever you've experienced short-term crises in your life—heartbreaks and difficulties of every stripe—your friends have rallied around you.

In the case of illness, for example, friends are all too happy to bring over chicken soup or Robitussin when you have a "normal" flu (with which they can empathize, having experienced it themselves); and if you were diagnosed with terminal cancer—the other end of the spectrum—most would rally around as best they could, often reading up on what your illness entailed. In our society people seem best equipped to deal with short-term illness and, ironically, with terminal illness—after all, each will end; but many people are at a loss to react appropriately to chronic illness.

For people with CFIDS (PWCs), this is a particularly thorny and isolating problem, because ours is a chronic illness that is simply not understood (even to doctors), and about which so much misinformation has appeared in the lay press. To many—including all too many practitioners of mainstream medicine—our disease is in fact a joke.

The Gut-Punch

"You're still sick?" is a question PWCs commonly have to field even after 10 or 20 years of illness. The implication—a punch to the gut—is that you're not really trying or just haven't scouted out the right doctor (yet?!), or some other gross misunderstanding between you and a non-sufferer. You can try to explain and explain again, by listing your worst symptoms or the many well-documented body-wide abnormalities, or by trying to use metaphors, but the plain fact is this: no one who hasn't personally suffered from chronic illness can ever be expected fully to understand it.

Certainly the name "CFIDS" (or worse, CFS) is no help. I once had two close friends staying with me, and I informed them at bedtime that when I woke up—"late" by their standards, early by mine—I wouldn't really be functional until I'd had not only coffee but also my morning pain pill. They jointly said in surprise, "You have pain?"  I had, needless to say, told them many times about migraines-from-hell and often-crippling joint pain, but all they'd really ever heard was the word fatigue. Sleeping late constituted the beginning, middle, and end of my "disease process," as they understood it. Similarly, I just received a note from a dearly loved cousin, who, in a four-page letter, asked in a single sentence about my illness: "Are you still having fatigue?"

The Redeeming Heart

And so, many of us sadly find that the first old saw becomes true—not overnight but day by day and year by year. Friends can't comprehend why we aren't our old selves anymore. They issue invitations and we cancel, so eventually all but the most understanding (and well-informed) simply stop asking. We may not have energy to return their letters and phone calls; or we may be afraid that if we do, they'll suggest getting together, when we don't know from day to day what we'll be capable of and we're terrified of canceling again.

At the same time, people move away; they marry or divorce or remarry, have children, switch jobs as they continue on upward career paths now denied to us, and change their lifestyles in myriad ways that sever what were once-strong bonds. (This, of course, happens to everyone to a lesser extent).

Sometimes I feel like I'm outside the one-way mirror of a police station interrogation room, looking in on the members of the healthy world but not seen, beating on the glass and screaming to be heard; other times I feel that they're on the outside, with me trapped in that room unable to leave. In any event, I've seen countless friends "peel" away slowly during my 12+ years of illness, like artichoke leaves falling away one by one, leaving only a small—if sweet and solid—core (the heart).

In reaction to our losses, we often turn for friendship only to fellow PWCs (patients with CFIDS)—those we know in person (from support groups and the like), and/or those faceless, voiceless email buddies we will probably never meet in our entire lives but who are always there for us. Indeed, my closest email friends (to my mind, among the closest friends I'll ever have) include not just CFIDS victims but those with other chronic disabilities to whom I never need explain myself: people with rheumatoid arthritis, diabetes, bipolar disease, MS. These people automatically "get it," sharing the shorthand of the chronically ill everywhere. The support I have received from these "cyberfriends" is overwhelming. It demonstrates that there is something unique about all of us with chronic illness and the way we are treated by others, including doctors; we live in this world, but also in a kind of parallel universe that "normals" can never enter.

The Forever Friends

There is another old saying at least as important as the first: that in your lifetime you will have scores of acquaintances, many of whom you will think of as lifelong friends (maybe for years), but in the end you will have lived a successful life if you can count on the fingers of a single hand two or three real, true "forever friends."

A View From Outside: How To Help A Person with ME/CFS

by Jean Mosher, R.N.

Twenty-five years ago I was working as a private duty nurse, and it was at this time I met a family member of one of my patients. She was very energetic and involved with life and is the most creative person I know.

As I recall, she had been diagnosed with myasthenia gravis and other assorted illnesses. Nothing was clear-cut and no definitive diagnosis was made for a very long time. It took some 12 years for that to happen.

As our friendship grew and I learned more about her medical history, I heard ofthe disease that was then called Chronic Epstein-Barr Virus, now referred to as Chronic Fatigue Syndrome CFS) or Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). Although I am the nurse, I have learned a lot from my friend, now supposedly "the patient."

Observations about energy: "Talking Hurts"

CFIDS is an all-encompassing and all-consuming disease. I hear about and have seen the conse­quences of brain dysfunction and the inability to comprehend simple information. Ordinary tasks in­cluding walking can be very arduous for a person with CFIDS (PWC). It is not at all unusual to lose muscle strength and fall at any time. I have seen this in my friend.I hear that en­ergy is very valuable, almost a gold standard for these patients. The energy it takes to even talk on the telephone is not easy, complicated by the per­sistent sore throat. Talking hurts. There are sleep disturbances. Going to bed does not mean "going to sleep." I hear ofnights that no sleep was possible or, more usual, finally getting to sleep about 6 a.m.She also has times where her sleep is disturbed and can wake every couple of hours. After sleeping 10, 12, or even 14 hours, she still is exhausted. Sleep studies seemingly have documented this distur­bance but relief does not seem to be within her easy grasp.

Finding a time to visit a person with CFIDS also is difficult. If the person has some energy, it may be more important, as they prioritize their time, for them to take a shower, feed themselves, do laundry, when possible, or see doctors. Social interplay takes work. Perhaps only one or two requirements for daily living can be accomplished and the remainder put off for a later date. I have found that people who are that ill usually do not use energy to make telephone calls for help, for they are too debilitated and are in bed.

A busy week for my friend would be to have three days outside the home, perhaps taken up with medical appointments. The rest of the week she is in bed. A good day would be to have enough energy to accomplish something for a two-, three-, or (pushing) a four-hour period in one day, including eating a meal and the preparation that goes with it. There are times my friend is too ill to eat,because as she explains it, it takes too much energy to prepare meals. Money is tight—and fast or prepared foods not an option.

Times of the year are also very important for my friend. The amount of sun and the tempera­ture of the day have significant repercussions, as do the sudden barometric pressure changes. She does better when it is warmer and there is more light; she suffers from Seasonal Affective Disor­der. This seems to aggravate the CFIDS symp­toms.

What friends and family can do

How to help as an outsider? To help a person with CFIDS is not to say: "Call me if you need me." That call most likely won't come. No energy to reach out.

To help is to enable independence, recognizing that every motion is energy and little energy is available. Doing shopping, picking up prescrip­tions, doing an errand, making a meal are all valu­able aids for anyone with CFIDS. Even offer to change a bed or clean. Help make phone calls, mail a letter, or offer to fill in forms when necessary; Any little thing to a well person is a mountain to climb for a PWC.

It took time before I understood the brain dys­function. At first I felt rejected, especially when my calls were not returned. I was looking at the relationship from my own perspective. I made a call; I expected a return call.

I was a slow learner, but eventually, I came to understand when my friend would say she couldn't process information. Her brain had effectively shut down and she knew what she was talking about. There have been many times she was too ill to speak on the phone.

I learned to respect that and now check with her when we settle into a conversa­tion. Sometimes it will start out fine, and a few minutes into it, she can't follow all the details and will tell me she "can't compute."

I have learned this is part of the process of the illness and no longer take it personally. I have also learned to listen to her and realize that as much as I may need to talk, I will wear her out and she will not hear anything. She will call me when she has the energy. Our friendship is not a one-way street, but a crooked road I have learned to negotiate.

Navigating the crooked road

Over time, I have come to understand the lan­guage of CFIDS. Everything seems to be mea­sured in energy units. When I tell my friend of how many miles I have walked to get some­where, she is exhausted just relating to it. I would suggest that others be sensitive to CFIDS lifestyles and the need for flexibility.

PWCs do not always know when they wake up what the day will hold for them. Their lifestyle has been dramatically affected, if they have a life at all. I have worked with cancer patients, and I see them doing better than the CFIDS patients I know. Still, while this illness may put limitations on my friend, our honest communication has not dimin­ished our friendship, or the essence of her.

To be a friend, I call regularly. I understand that if I get the answering machine, my friend can either be out, or out of it. Our mutual under­standing is that she doesn't have to feel pres­sured into returning my calls, and I want her to know I call to check in so she knows someone cares.

Be a friend to a CFIDS patient. It is worth the work. It takes flexibility, understanding, and pa­tience, but it is worth it. It is not enough to be willing to help, you must act on that willingness.

These are not dispensable people, but rather peo­ple who cannot be dispensed with. The spirit of a person never really leaves them, whatever their physical condition, and if the friendship is built on that and on love, you've got a winner.

Right Now, Somebody, Somewhere

Somebody is thinking of you.
Somebody is caring about you.
Somebody is very proud of you.
Somebody misses you.
Somebody wants to talk to you.
Somebody wants to be with you.
Somebody hopes you are not in trouble.

Somebody is thankful for the support you have provided.
Somebody wants to hold your hand.
Somebody hopes everything turns out all right.
Somebody wants you to be happy.
Somebody wants you to find him/her.
Somebody wants to give you a gift.

Somebody thinks you ARE a gift.
Somebody admires your strength.
Somebody wants to give you a hug.
Somebody is thinking of you and smiling.
Somebody wants to protect you.
Somebody can't wait to see you.
Somebody loves you for who you are.

Somebody treasures your spirit.
Somebody is glad that you are their friend.
Somebody wants to get to know you better.
Somebody wants to be near you.

Somebody wants you to know they are there for you.
Somebody wants to share their dreams with you.
Somebody is alive because of you.
Somebody needs your support.

Somebody will cry when they read this.
Somebody needs you to have faith in them.
Somebody trusts you.
Somebody hears a song that reminds them of you.
Somebody would do anything for you.

Postscript: Reading the above may bring many "somebodies" to mindfriends and family who have helped you, and those whom you have helped.  But if you're feeling particularly isolated or sick today, you may not know right now who those somebodies or somebody might be.  Rest assured that, for each of us, there IS a somebody thinking of us and wishing us welleven if you don't know at this moment who that somebody is.

(Source: Several Internet newsletters; author unknown)

Lifestyle Management

Coping with a significant change in life, like chronic illness, requires that a person come to terms with his/her situation, focus on what s/he can still do and make sensible changes, such as:

  • Educating oneself about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Fibromyalgia (FM) in order to get a reasonably good understanding of how the illness manifests and how it is generally managed.
  • Establishing a new sense of "normal" for yourself by trying to recognize early signs of when you are starting to surpass your limit and determining when you tend to feel or function your best. Don't overdo even when having a good day. Always plan rest breaks.
  • Pacing activities by alternating tasks/chores and breaking them down into smaller, more manageable steps and resting in between. Prioritize and determine what can wait. Try to schedule things (if at all possible) when you function best and add a little extra time to avoid rushing or unforeseen delays or problems along the way.
  • Creating a safe, quiet space for yourself where you can clear your mind and rest—especially for sleep. Keeping the television on may provide company, but the bright, flickering lights and continued background noise can interfere with sleep. It will also interfere with cognition, since ME/CFS and FM patients frequently have trouble focusing and multi-tasking.
  • Developing a routine by which to keep track of appointments, planned activities and even symptoms. A calendar with large write-in blocks or a spiral notebook will serve the purpose. A calendar will help you quickly see how appointments or activities are spread out and help to fit in adequate recovery time in between these. Another calendar could be used to record symptoms and medications (especially adverse reactions), which in turn, may even help identify a pattern in symptoms or pinpoint when a specific problem started. Keep several pads of paper handy so you can jot down thoughts or something you need to remember. Also, try to establish a designated place where you leave your keys or glasses.
  • Finding ways to escape daily drudgery and have fun—such as music, movies, audio books, puzzles, crafts, going outside (whether you can take a short walk or just sit in fresh air), and/or looking for community events at local schools, bookstores, churches or centers.
  • Seeking support through groups, whether these are actual groups or internet message boards, and trying to stay connected to others by short emails or phone calls. Plan a "field trip" with a friend or neighbor for lunch, shopping, or a concert. Invite a friend over for a "sleep over" and just sit around in your PJs, talk or watch TV together. Try to maintain a sense of humor and remember to laugh.
  • Journaling can help to release bottled up feelings/thoughts from one's mind to paper. This way, you are not carrying these with you all day.
  • Attending to your emotional and spiritual needs. Try reading inspirational material or going to church or temple. Find something uplifting and meaningful to do—like sending a personal note or card to a friend or someone in the community.
  • When the going gets too rough, it is perfectly fine and advisable to seek a practitioner or therapist for one-on-one counseling to help you grieve the losses, accept the illness and make healthy lifestyle adjustments.

More resources 

10 Rules for Those Who Love ME/CFS and FM Patients

A View from Outside: How to Help a Person with ME/CFS

Book review of Full Catastrophe Living—Using the Wisdom of your Body and Mind to Face Stress, Pain and Illness by Jon Kabat-Zinn Ph.D.

Book review of How to be Sick: A Buddhist-inspired Guide

Coping articles—A selection

Dr. Lapp's Stepwise Approach to Managing FM and ME/CFS

Emergency Preparedness Plans for ME/CFS and FM Patients

Living in your energy envelope

ME/CFS Self-Care: The Basics

My Perspectives on the Making of a Support Group

Perspectives on Friendship

Recovering from ME/CFS

Rest, Pacing and Stress: What Every ME/CFS Patient Needs to Know

Self-Care Strategies

The ME/CFS Initiation—A Primer for New Patients

Tips for living with ME/CFS and FM

Tips for traveling if you are an ME/CFS or FM patient