[ Back to Index ]

Most of the literature on chronic fatigue syndrome (CFS) has focused on etiology, treatment, and cure. But in light of the serious disability that many of us experience, more emphasis must be placed on developing remedies to sustain us while ill and prevent further deterioration until more effective medical help emerges.

Individual coping strategies and local support groups are fine as far as they go. However, by their nature they can't address some of the essential needs many of us have--especially those who are most disabled, impoverished, and/or living alone.

THE PROBLEM AND ITS CONSEQUENCES

I believe there are three main components to our daily living difficulties. They are not mutually exclusive, sometimes interact, and have health consequences:

1. Limited ability to perform certain tasks of everyday living: At different stages of the illness there can be difficulty walking, carrying packages, or exerting much muscular effort ("elbow grease"). Food shopping and household tasks become difficult-to- impossible. Some of us lack the stamina to drive, further limiting our ability to maintain our household and take care of personal needs. Lamps and vacuum cleaners break and require repair. Some essential items can't be purchased through catalogues or purchased sight unseen. Also, there's banking? You can deposit checks through the mail but you can't get cash that way.

Finding and paying for hired gophers for these small and irregular jobs is often an insurmountable problem. Asking friends and relatives creates other difficulties.

2. Isolation: This has a multiplicity of causes and implications. Primarily it results either from having too little energy after work or, for those who've become work disabled, from being removed from a central source of social interaction.

Thus, for contact and recreation we turn to the same people we rely on for the errands we can't do, overloading those relationships. And the truth is that friendship and "relativeship" best survive under a reasonable equality of giving, taking, and uplift rather than burden. Our difficulties, limits, and unpredictability (which our illness is infamous for) are tedious, restricting, and sometimes hard to believe.

You might become creative about new forms of giving, bend over backwards to make compromises, try to remain knowledgeable and interesting, are careful about what, when, and whom to ask for help. But even when you don't ask, your needs hover. Reactions of guilt and resentment are provoked. A shift occurs. The relationships are not what they were--the peer quality has eroded. Sometimes they even end.

Making new friends is difficult. When you're unemployed, you lose cache. What you "do" is an important social ticket. And even if by reasons of personality, appearance, accomplishment, or wit you might be able to attract people, many, when they hear "sick," take a few steps back. Their eyes glaze over and retract. Their interest dissolves. They fear you might turn into a burden.

It's true you make new friends among others with CFS, but you need and treasure your old friends. They represent your well self, and unless you decide to take a total nose-dive into illness, they're vital to you.

3. Insufficient funds for adequate housing and the hiring of help: If you could hire help, a burden would be lifted--you'd have essential needs fulfilled without overloading your close relationships.

But with the absence of a paycheck or a reduced one, the general inadequacy of disability income, and the ultimate erosion of savings, you can't afford this solution.

REMEDIES

A. Support Networks

The AIDS people have found ways to allow PWAs to remain in their own homes. Healthy volunteers help attend to some of their needs. This might be possible for us.

But our situations are not comparable. Unlike us, many AIDS networks arose because of AIDS' association with the gay community. It was bound together by issues beyond the disease--sexual orientation and socially oppressed status. Even those who are HIV positive can feel fine and have been essential to this support. PWCs (3) have no basis for alliance beyond the illness, when we're already too sick to help.

This difference contributes to the difficulty in forming organized support networks. They could help, but they still don't solve certain problems that proximity of housing and communal commitment do.

B. Shared Housing

This refers to living under one roof. Apparently there already are some group houses specifically for PWCs. We need to know how they got started, their costs, their advantages and difficulties, who does best living in them, and who doesn't.

C. Cohousing

There is a form of community called "cohousing" ("coho"). Books and journals exist on the topic. There's an Internet list. Though no authority on coho, I feel it can offer us an important model for our own communities or already extant communities for us to join.

The central distinction between cohousing and shared housing is that in coho each unit is complete unto itself. Thus, coho offers PWCs what it does for the well--a way to counter isolation and share (via proximity and communality) yet have privacy and control over your quarters.

We need separation to maximize our ability to get absolute rest. We also need more than average control over our immediate environment due to our many but varying hypersensitivities and disabilities. Separate housing units allows for this. Proximity and community provide contact and ways to share in the purchase of help.

OUR OWN COHO COMMUNITIES

Were we to develop our own coho communities, we could tailor-make them to suit our special needs and find ways to share in the hiring of gophers and helpers.(4) This would reduce the stress associated with the oft fruitless search for help and would unburden our relationships with friends and relatives.

When bedridden or housebound, you can go mad from the isolation. With people close they could pop in for a laugh but not drain you with the longer visits that occur when people come from afar.

Many of us live in apartments, often to be on one floor. In some, to get outside is more of a hike than we're up to. A coho unit could allow for close out-of-doors access, via a front porch or deck. When you can't walk far from your bed, being able to get some fresh air, sit near a tree or some flowers rather than lingering indoors can mean a great deal to the spirit and even hasten you out of a slump.

Perhaps we could more easily connect up with certain forms of treatment--a therapeutic pool, a doctor who understands our disease, massage therapists, and more. We might even be a model for developing creative modes of living with this illness.

ACHIEVING A BALANCE

I'm of two minds about coho communities comprised solely of people who are ill.

Might they reinforce us in our illness? Would we get weary from being surrounded by people whose central concern is the illness? For me this weariness sets in even from my daily (albeit very important) exposure to the Internet lists on chronic fatigue syndrome. Sometimes instead of feeling good from the warm support and the cutting edge information, I feel too surrounded by illness. On the Internet, I can delete messages. But in a community where I'd live could I bear sequestering myself in my own abode to avoid illness talk just at the time I want contact?

Or would the support free us to be more productive and creative because we'd be less burdened by negotiating for care.

THE PROBLEMS AND VIRTUES OF LIVING IN COHO COMMUNITIES FOR THE WELL

Communities developed for the fully well would in many ways be the best place for us to live. They wouldn't ghettoize us and, relatedly, stigmatize us. They wouldn't contribute to the reinforcement of our illness. We'd be able to seek places in geographic areas and with the kinds of people that suit our own personalities and interests as human beings not as people who are ill.

However, if such coho communities were to work for us, this would require that these communities be truly willing to make a commitment to help us in coping with some of our different needs-- for example, if we can't do our own shopping and were relocating to a new geographic area, identifying stores that deliver a full range of food and medicine; providing us with the names of carpenters who could do some housing modification if such changes were necessary; dropping by to say hello when we couldn't get far from our housing units to socialize; assisting us in locating some helpers and gophers from the larger community.

I don't know if this could happen and allow us to avoid feeling a burden or an obligation, which would be demoralizing and defeat the uplift of community life. When I think about this I sometimes worry. I surely couldn't now stand long enough or exert the energy to cook a group meal. Would they need something I could do, as my community offering? They would have to understand the illness and respect our need to set limits, not seeing these as signs of moral dependency and copout. Might we feel inadequate because we couldn't come through in the way our coho neighbors would?

So, ideally, while there's lots to be said for our being integrated into communities that aren't ghettoized for the ill, could sufficient understanding and acceptance of our varying limits occur for this arrangement to work? Since many of us are very educated, skilled, and resourceful, could our assets be found to be sufficiently compensatory? Not to mention the virtue that might come to these communities from including a fuller range of life's realities, which can always hit--in one form or another--one of the presently well members, just as it did us.

The key issue is how to achieve a balance between serving our needs for contact via proximity, getting help in coping with everyday chores, and having easy access to the out of doors yet not live in circumstances that stigmatize us or reinforce or inundate us with illness.

FUNDING

So many people in this country, no matter how well paid they are, are just one or two paychecks away from poverty. They simply have little in savings. But even if you do, on disability income, without a working spouse--sometimes even with one--funds soon get depleted and you're catapulted from economic comfort to difficulty or poverty, and dependence on state welfare of various sorts.

Hence, to establish coho communities or enter existing ones, public agencies or private organizations will have to recognize this need and provide support. Otherwise, most people who are ill with this condition will have to remain in their current situation, struggling for needed assistance and facing longterm isolation. Not a recipe for recovering health.

RETREATS

For many whose degree of disability is such that they can't go to regular vacation spots, we need places for PWCs in crises or with the human need to simply get away.

As is typical of many people with this illness, I haven't been out of my city for eight years. I long to be amongst trees, near water, or the mountains. My view out my window is of another high rise across the street. A view of bricks and concrete grows old fast and is not very renewing.

August l995

ENDNOTES:

1. THE CFIDS CHRONICLE is the major national journal (with international distribution) devoted to all aspects of chronic fatigue syndrome (CFS). It includes scientific papers by physicians and basic scientists, reports on public policy, patient advocacy, and other matters. "CFS" and "CFIDS" are acronyms that refer to the same condition.
2. The author is a sociologist of medicine who, before falling ill with CFS, was finishing the research for her doctoral dissertation and working as the director of psychosocial training in a family medicine residency program at a large urban teaching hospital. She taught on hospital wards and outpatient clinics while medical residents were seeing their patients. Her goal was to help improve the quality of medical diagnosis and treatment by integrating relevant knowledge and insights from the fields of sociology and psychology.
3. The term "PWC" has come into usage as an acronym for the term "people with chronic fatigue syndrome."
4. An artist friend of mine said she thought that instead of our paying for these services, we might provide a few housing units or studios for artists and writers. They could work for us part time in exchange . This would have the added advantage for us of having the stimulation and presence of people who are well.

[ Back to Index ]