Chapter 27: Support Groups: Self-Help Is the Best Help
|Better to light a candle than to curse the darkness.
- chinese proverb
Any serious illness causes considerable personal distress and anguish. To add insult to injury, you often feel isolated and cut off from the rest of the world, since most normal people cannot understand what you are going through. While your doctor can provide you with the medical care you need, you often need emotional support as well, which very few doctors can provide! While friends and family members usually provide such support, often this is not forthcoming in the case of certain sensitive problems such as AIDS, infertility or cancer, making patients even more miserable. This is where support groups come in. Such groups bring together people troubled by the same problem in order to share emotional and moral support, plus practical information. There are over a thousand support groups in the US itself, and these groups can range in size from the huge Alcoholics Anonymous, with thousands of chapters in 112 countries, to the handful of adults afflicted by infertility who meet in a clinic in Bombay. Support groups traditionally meet face to face, but now many meet over the internet as well!
Also known as self-help, peer support, and mutual aid groups, these groups can be founded by several categories of people: for instance, health care professionals who believe that patients need to learn to help themselves: by individuals who are convinced that professionals alone cant meet all their needs: or by advocates for persons with specific diseases.
Support groups act as a complement to medical care - they definitely do not replace your doctor! The very act of sharing the emotional side of an illness and exchanging helpful advice can encourage recovery or simply make it easier to cope with your problems. For example, if youve just been diagnosed as cancer, you may hide having a your anxiety and fear from your family and friends to avoid upsetting them. In turn, to avoid saying the wrong thing, they may say nothing at all. These barriers of silence tend to melt into refreshing candour when you meet others who are coping with a similar burden. Similarly, if youre caring for someone with Alzheimers disease, sharing your experiences with other caregivers can help you recognize that occasionally feeling resentful and sad is normal.
Many group members can often offer pearls of practical advice, which help you to cope better with your illness. For example, infertile patients need to take daily injections when undergoing in vitro fertilization (IVF) treatment. One patient discovered that if she applied a ice cube to the site before the shot, the area would get numbed, and the injection wouldnt hurt as much. She shared her knowledge with others in the group so that they could also benefit from her experience. Support groups also allow you to gain more control over your life because you can learn from others who have already been through what you are going through now. An additional bonus is that they can help you to find the best doctor or hospital for your particular problem, because you can learn from other members experiences with various doctors - both good and bad !
Besides offering moral support, a good support group may actually help you live longer! Researchers from Stanford University and the University of California at Berkeley studied 86 women with advanced breast cancer for 10 years. They found that the women who joined a support group outlived those who did not by an average of nearly 18 months.
Support groups aim to achieve many goals. Primarily, they provide compassionate and informed help to people experiencing hardship and agony due to an illness. They can also help increase visibility about issues which concern them by educating the public and presenting their viewpoint through the media. In the US, many support groups act as powerful lobbies. For example, groups of parents of children with mental disability have been able to convince law-makers to pass legislation which prevents discrimination against disabled citizens. Many groups have also been successful in raising funds to help promote medical research into their disease. Others have published books and leaflets about the illness in order to disseminate information more widely, thus helping to dispel many myths and misconceptions about the disease among the general public.
Support groups help primarily because they make you realize that you are not alone. An additional pleasant bonus many people discover is that by helping other people in their time of need, they learn to help themselves! The very process of being able to ventilate your feelings and to get and provide emotional support can prove to be a healing experience.
Try and identify a support group which contain a mix of veterans and newcomers at different stages of coping with an illness. People who have lived with health problems for years usually develop more insight and have more information to offer, while new entrants offer another perspective. The group of your choice should consist of people with whom you feel comfortable, and leaders who empathize, by gently drawing out the shy members and keeping in check those trying to dominate. A good group should have a stable track record of meeting the needs of all members.
Not all support groups are reliable. Dont be fooled by groups that put their interests before yours. Avoid groups that: (1) promise sure cures and quick solutions; (2) urge you to stop prescribed treatment and recommend a single solution to your problem; (3) insist that you reveal private or sensitive information; or (4) charge high fees or compel you to buy certain products. Most support groups are free, or support themselves by collecting voluntary donations or charging modest membership fees to cover expenses such as refreshments or production costs of leaflets/brochures.
Many good doctors are happy to refer their patients to such groups. They realize that support groups provide valuable emotional support, which doctors, as busy professionals, simply cannot, because of time constraints. Unfortunately, misconceptions about support groups prevent many people from making use of this valuable source of help. Some patients become anxious that joining a support group might cause them to dwell even more on their problem, while others may feel that their illness is too private or personal or traumatic to share with a group of strangers. You may also believe that you can handle the crisis on your own. In reality, any serious illness is too traumatic not to share with others, and there is nothing wrong about reaching out for help. Such a step is definitely not a sign of weakness. A support group simply provides a safe, warm and supportive environment: you need never say a word if you dont want to.
Fortunately, Indian patients are now realizing the importance of networking amongst themselves, and, presently, many support groups have sprung up all over India for illnesses ranging from Azheimers disease, cancer, infertility, muscular dystrophy, multiple sclerosis to thalassemia. However, a major problem in India is that the culture of self-help is still very new. Most patients are passively dependent on their doctors, and they still expect their doctor to do everything for them. Remember, however, that the more you help yourself, the easier it is for your doctor to help you! After all, if patients will not look after their own interests, then who will?