Support Groups vary almost as much as their individual members. Some focus on emotional support, some provide research and treatment information, while others work for advocacy and awareness. Perhaps there is no greater time when support is more critically needed than in the first few months of illness or disability, as the reality of the situation begins to set in. People tend to feel alone, overwhelmed, and may not know where to turn for information.
This was how I felt when I first found out I had Fibromyalgia, and later when I was no longer able to work. I probably do not need to outline in detail the vast array of adjustments that this change in my life required. I was in the process of trying to accept the illness and to cope with it in the best way I knew how. The frustrations and discouraging setbacks were many. But perhaps the single most difficult thing to deal with was the aloneness and isolation. As my colleagues at work, my friends, and my family seemingly “went on without me,” I was left alone to ponder the many questions and doubts that Fibro had brought me.
Despite the good intentions of those who were close to me, I couldn't help feeling that no one really understood, no one could help even if they wanted to, and no one could truly travel this journey with me and make me feel any less alone.
My diagnosis initially set off a flurry of activity. I read books, I searched the Internet, I went to doctors and even to health food stores in search of a “cure,” or at least a remedy to my sense of helplessness. But I realized what I needed most was someone just to understand. So I sought out a support group in my area through the English Fibro Support Groups. I found out that the next meeting was scheduled several weeks later, so I had plenty of time to think about what I wanted from my participation.
n I was searching for understanding, someone just to listen to my feelings, fears, and concerns; someone to validate that I wasn't crazy, someone to remind me that I wasn't alone.
n I was searching for reassurance, a role model of the optimism that so often eludes me.
n I was searching for acceptance, someone to know and value me for who I am, since I am no longer what I do.
n I was searching for a place to belong, somewhere I could be myself without pretending, without having to hide a part of myself.
n And I was searching for a place to contribute, so that I might reach out to help others, and in so doing I might lift myself up as well.
I suppose that is a tall order, and perhaps I simply wanted too much. But I did not find those things in my first visit to a support group. What I found instead was a group of people who seemed to have forgotten not only the meaning of support, but perhaps have lost touch with what sent them in search of the support that I looked for.
When I arrived I was not sure I was in the right place. The man I assumed was the leader (he did not introduce himself) assured me I was, and he invited me to take a seat. About six others were sitting around a long table. The room was cold and stark. Only one of the participants introduced himself to me. When the leader began the meeting, he suggested that since I was new, I should “check in.” So I assumed I should introduce myself and tell the group something about my situation. After I finished, the leader continued with other “business” - no questions or response to what I had said, no other introductions of the group members.
The meeting business consisted primarily of announcements: the latest research studies, news articles that had appeared recently, the latest advocacy activities, new medications, etc. A flurry of papers flew around the table with copies of articles, lists of medications, directories of doctors and dentists. One woman had a shopping bag full of magazines and newsletters. All through the meeting she pored through the huge stacks of paper, incessantly talking about the latest “scientific discoveries” and quite aggressively giving this unsolicited information to other group members.
Some topics were specifically related to Fibro, some were more general, such as nutrition, environmental pollutants, etc. She and others spoke about levels of mercury in fish, a new memory test that “proved” the existence of Fibro, a hair analysis test that identifies exposure to toxic chemicals in the environment, and a variety of blood analysis tests. One participant was spending thousands of dollars to have the fillings in his teeth changed to a “non-toxic” material. The group argued about medications: natural vs. synthetic, whether any really worked at all or whether the doctors were simply conspiring against us. I was overwhelmed and confused.
Disturbing to me was that the whole atmosphere was one of bitter anger, of evidence and theories whipped up into a kind of hysteria. The accusatory tone of the participants pointed to conspiracies, creating an “us-them” dichotomy between Chronic Fatigue Syndrome and Fibromyalgia sufferers and the government, doctors, or just about anyone else. I was amazed at the time and energy which clearly went into gathering such a mass of information, and I was disturbed by the fact that this relentless pursuit – whether pursuit of a cure or simply pursuit of validation for our suffering – seemed to have overtaken the focus of these individuals’ lives.
I don't want to be judgmental or to discount the positive effects that such focused energy (and even anger) can have. I admit that just being inflicted with the curse of this illness can be enough to “justify” such a reaction, and it can be difficult sometimes just to find any way to cope.
n Even in the short time that I had been sick, I had begun to understand the frustration and discouragement that can seem to dominate each and every day.
n Of course, I recognized that sharing information and exchanging ideas about anything and everything that might prove helpful to someone can be a practical way to cope.
n Certainly, I acknowledged the contribution that many Fibromyalgia advocates have made in advancing the cause of greater understanding and much-needed research.
n No doubt, I admired the courage of those who are willing to confront the government and others in order to effect positive change.
n Finally, I understood that the defensiveness among this group of people was clearly a reaction to the fact that many had been challenged, doubted, and dismissed by those who were unable or unwilling to understand.
Yet keeping all this in mind, what is the true meaning of support? In fighting these various adversaries, whether real or imagined, I couldn't help but think we are also fighting ourselves. Given the limited energy that most of us have, is it productive or rewarding to spend it in this way? I don't want to use all the reduced hours in my day reading about and researching my illness, nor do I want to pursue each of the latest remedies – only to find that I have missed out on the simple pleasures that give true meaning to my life. I want to live my life, in the best and fullest way I can. I truly hope that for me and all who suffer, Fibromyalgia will eventually be a thing of the past. But until that time, the quality of each day is still up to us. And I believe that quality is influenced by a wide variety of things, some of which have nothing to do with being sick, or even with recovery.
Helen Keller said, “The best and most beautiful things in the world cannot be seen, nor touched... but are felt in the heart.” While our bodies (and for many of us even our minds) are sick, our hearts have the capacity to experience joy and love. Most importantly, we have the ability to reach out to others, to give and receive support. We can remind each other that we are not alone, that we have value, and that “this too shall pass.” When we are feeling a bit stronger, those who are weaker can lean on us. And we can teach what we have learned to those who have not yet traveled that road. We need not decide that the rest of the world is against us, but rather we can share ideas of how to connect and promote the understanding we long for and deserve. We can express our rage and sadness at the limits Fibromyalgia has placed upon our lives, but we can also share the daily blessings we may have come to appreciate.
Admittedly, my impressions of the first support group meeting I attended were “out of context” and, therefore, maybe harsher than need be. As someone who was newly diagnosed, my needs were unique, and probably different from the needs of long-time members. Over the years that I have struggled with this illness, I have learned a tremendous amount from individuals and groups who have offered their limited energy to help and support others. However, I did learn something from that first experience about what I want from the quality of my life, even while I am sick. For those of us who take part in support groups, I think it is critical to look at how we meet the needs of new group members, particularly the newly diagnosed.
I call on all support group leaders and participants to reflect and to question what it is that we are trying to accomplish in these meetings, and what is the true meaning of support. Each individual is sure to have a purpose for being there that is a bit different from another; this diversity can only add value and richness to what we share with each other. Nevertheless, while it is impossible to know exactly what kind of support might be needed, perhaps the greatest gift we could give is just to ask.
Dr. Karl Menninger said, “Love cures people – both the ones who give it and the ones who receive it.” I believe that support, in the true meaning of the word, can do the same.
Reproduced with permission of the We Are FMily Support group, at www.wearefmily.com