Support groups: Help when it’s needed
Chronic illness may cause more depression than any other “single” issue — and not just for what most of us would assume are the obvious reasons. In an April 1996 article in the American Journal of Geriatric Psychiatry, Dr. Ira R. Katz described what researchers think may be real, physical connections between depression and physiological illnesses, particularly chronic conditions. “In the elderly,” says Katz, who’s professor of psychiatry and Director of the Section of Geriatric Psychiatry at the University of Pennsylvania and the Philadelphia VA Medical Center, “interactions between depression and medical illness can create vicious cycles in which physical disorders lead to depression and depression can, in turn, lead to further physical deterioration.”
It’s been speculated that the kind of changes the body undergoes during any severe, chronic illness — in addition, perhaps, to the effects of prolonged use of medications — may cause actual physical changes in the “wiring” and neurological functioning of the brain, which lead to depression. Magnetic resonance imaging (MRI) has already demonstrated that geriatric depressions, especially those that begin late in life, a associated with “unidentified bright objects,” or “UBOs” (also known as hyperintensities), in certain regions of the brain. UBOs have been associated, in turn, with a number of chronic conditions, including hypertension; diabetes; and cardiac, cerebrovascular and peripheral vascular disease.
If such findings are confirmed, it may well be revealed that similar physical changes are associated with a wide spectrum of chronic conditions, though it hardly seems necessary to draw a physical line between chronic illness and depression. Believing, or knowing, that you’re never going to be “well” again; believing that you may never again be able to do many of the things you previously enjoyed; that limits will be imposed on your social and recreational activities and your ability to work and earn a living and, perhaps, even on the length of your life — in themselves, those are depressing considerations.
Comparisons can be depressing
It doesn’t help being surrounded by healthy people: You may compare yourself unfavourably with them. You may feel inadequate because your condition keeps you from accomplishing everything you feel you should — and everything you’re sure others feel you should. Your self-esteem may be taking a beating, and you may find that none of those healthy people who surround you can provide the kind of reinforcement and support you so desperately need.
That’s where support groups come in, and that’s why nearly every chronic disease alliance organizes or is involved in support groups, associations of people who share a particular health condition — people who know what you’re going through because they’ve already walked a mile in your shoes.
For some, support groups comprise the first people who not only understand how they feel, they’re the first who believe how they feel. One of the cruel ironies of arthritis, for instance, is that many people don’t look as sick as they feel. No matter how sympathetic friends and family are, they can’t share the pain or truly empathize with the degree of suffering someone with lupus or rheumatoid arthritis or fibromyalgia may be experiencing, and that can be deeply frustrating — and depressing. Support groups are an especially good idea in the first couple of years of a disease, says Toronto rheumatologist Dr. Rachel Shupak, when you may be feeling your frustration most intensely. People benefit from just talking to other patients with similar problems, Shupak says: “They’ve been able to see that they’re not alone and that there are ways of dealing with their illness and their depression. I think that’s important.”
Practical advice when it counts
Something else most people find out very quickly is that support groups are one of the best sources of practical tips and suggestions on how to cope with pain or disability, how to deal with insurance companies, where to go for health services, or how to manage the new difficulties of daily living that may have suddenly intruded on your life. Support groups can also be a boon to young people, who may be fighting other people’s misconceptions of certain conditions as “old person’s diseases” — why do they have it? Discovering that there are other young people going through the same experience is a kind of validation that lifts a weight off their shoulders and gives them a jolt of motivation.
Next page: The “caregiving surround”
The sense of aloneness and depression that illness confers is even deeper for someone with AIDS. Many gay patients are deserted by their families and rejected by society, and many end up dying in virtual solitude — some in agonies of self-loathing. Yet many others are cared for by friends and family who come together in a very special kind of support group, what American AIDS activist Dr. Alvin Novick has called “the caregiving surround” — a communal act of love and support that serves as a kind of bulwark against the terrible judgement of those who somehow believe that what’s happening to the person with AIDS should happen to him or her.
As AIDS aptly illustrates, it’s not only those who actually have an illness who may need a support group; oftentimes their friends, family and caregivers need support and consolation, too. Coping with a loved one’s chronic illness is a wrenching experience that can leave people adrift on a sea of conflicting emotions — sadness at the loved one’s misfortune, anger at the loss of expected years together, resentment at having to do so much for a person who may be able to do little or nothing in return.
There’s also fear of the future, guilt that the caregiver is disease-free and will live on when the sick person is gone; there may even be disgust at the disease itself, as it inflicts terrible symptoms on the person with the condition. In his 1994 book, How We Die, Reflections on Life’s Final Chapter, Dr. Sherwin B. Nuland cites the special need for support for caregivers of Alzheimer’s disease patients, who are almost inevitably close family members — at least until the patient’s needs exceed their ability to help, which comes inevitably to every spouse or son or daughter eventually.
There’s probably no other disability, Nuland writes, “in which the presence of support groups can help so decisively to ensure the emotional survival of the closest witnesses to the disintegration [of the person with the disease].” Support groups function “not only to provide help but also as advocates of increased funding for research and clinical improvements. There is strength in numbers, even when the numbers are only one or two understanding people who can soften the anguish by the simple act of listening.”
Alzheimer’s teaches as well
Alzheimer’s attacks both the person with the disease and his or her family, and families may need special help to survive “the viciousness of the attack,” Nuland suggests. “Not that help of any sort should be expected to provide release from the torment — it can only make the suffering understandable and offer some respite from the ordeal. The very knowledge that a family’s feelings of rage and frustration are universal and unavoidable, the assurance that understanding ears will listen and understanding hearts will share — these are the realizations that can lift away the loneliness and unjustified feelings of guilt and remorse that magnify the deluge of despair visited on each participant by the spiritual subjugation of Alzheimer’s.”
Almost every chronic health condition has a special case to make. Mridula Sood is Program Coordinator of the Bayview Support Network (BSN) at Toronto-Sunnybrook Regional Cancer Centre. She leads a dedicated core of about 55 volunteers, most of whom are “patient-providers,” people who’ve been through “the whole process,” Sood says, “from diagnosis through treatment to living with the disease day-to-day.”
Sood has been involved in other volunteer groups but has never seen a group so committed, with such a unique dynamic. When she started a couple of years ago, the group was still “very much a family,” but, even as the volunteer base grew, the sense of a committed camaraderie has remained. Sood believes that’s mostly a result of their having shared “the experience of living through cancer, going through the treatment — it’s an automatic connection. It’s a sense of `You understand. You’ve been there. You know what I’ve been through.’ They understand the need for support from someone else who’s been there, or someone who’s newly diagnosed and is going through a situation.”
And, of course, there’s still the grim tie that links cancer patients, despite the wealth of new information about the disease, and despite the fact that survival rates are increasing with new treatments: For most people, Sood points out, “cancer still means death. People equate that quite literally. So, just coming in and seeing someone who’s been around — whether it’s a one-year survivor or a 20-year survivor — gives them hope, and it gives them a bond that they can be that person, too. They can survive it.”
Timing is up to you
Some people aren’t ready to come to a support group immediately after they’re diagnosed; some people come right at the beginning. “It’s an individual decision,” Sood says, “when you feel you need the support of others who’ve been there. Some patients don’t access support groups because they feel they can get the support they need from their families, their friends — and they may not need to talk to someone who’s been there. It depends on the individual.”
The important thing is that patients know they’re not alone, Sood says, “that there are other people out there who’ve survived this disease and could offer a little bit of support and insight, and hopefully a little bit of information to help lessen the burden of dealing with cancer on a day-to-day basis.”
Whatever your health condition — and whether you’re a patient or a caregiver — almost without exception, there’s a support group for you.