When I used to tell people I attend 2 monthly support groups for ALS, and log onto a few support group lists online [including ALSA’s “Aspire” and Yahoo’s “Living With ALS” online group] I met with very disturbing responses, such as “Isn’t that too depressing?”, “I would never do that!”, or “Do you share sob stories, and is there a lot of crying?”. One friend battling cancer, gave me the most thought-provoking comment of all: “I want to forget I have cancer, so I don’t want to talk about it or hear about it any more than I have to. As a matter of fact, I want to go places where nobody knows that I have cancer”. I thought about all those responses — especially the last one — and came up with some valid reasons why patients with ALS [PALS], caregivers [CALS], and family and friends of PALS and CALS are different, and why support groups are a positive move in the ALS community.
I attend two meetings a month — one sponsored by the ALS Association of Greater New York [ALSA of GNY], and one by the ALS division of a major organization for neuromuscular diseases, and following are the reasons why:
PALS don’t have the option of going anywhere to hide their ALS. My friend was lucky because he was already bald, so hair loss wasn’t an issue, but many cancer patients can’t hide their disease either, especially women, or patients who lose a lot of weight. PALS, however, always look different from the way they looked before ALS, no matter what stage of the disease they are in, or which onset they have — limb or bulbar. ALS is out there, never in the closet. So you might as well meet other people who can’t hide it either, and share stories of how it is to be different, and to be treated, suddenly, totally differently than before. Soon, you will find you are not so different; there are people out there just like you. If you are a CALS, your issues are different from your friends who cared for elderly parents, or relatives with other diseases. There are other people out there who share your unique issues.
ALS is relatively rare. Most people will go through life never meeting a PALS or a CALS, but try to find anyone whose life has not been touched by cancer, diabetes, or heart disease, either directly or through a friend or relative. And almost everyone knows someone touched by MS, Parkinson’s, AIDS, or diabetes. Nobody can understand what you are going through with ALS, like a person going through it himself. Sometimes, the only place you will find this, is in an ALS-specific support group. When I try to talk about ALS with friends outside the ALS community, I hear all kinds of meaningless platitudes. They don’t understand, and they can’t be expected to. Without my own ALS community of PALS, CALS, and supporters of friends with ALS, I would be frustrated and alone.
Sometimes we learn more from peers than from doctors and other health-care professionals. “Is this normal?”, “Should I worry/be concerned about ______?”, or “Has anybody else experienced ____________?”, are common questions asked at my support groups. Problems, issues, side-effects, remedies, frustrations, or even joys of PALS or CALS, dealing with aides, bi-paps, medicines, spasms, breathing, family, friends, the community, or anything or anybody affecting our ALS lives, can often be more beneficial coming from the people who deal with ALS every day. And, often, doctors and health-care professionals get their information from PALS and CALS anyway.
And, lastly, there’s more happening at a support group than crying, whining, and complaining Most support groups have guest speakers from time to time. They might be healthcare professionals speaking about respiration, nutrition, research, or other ALS-specific issues. Speakers also may come from organizations that service PALS, provide advocacy, or raise money. Speakers may be eldercare attorneys, suppliers of assistive technology, or practitioners of alternative therapies or spirituality. Whatever the topic, there is something to learn, or new developments you will want to know about.
Is there crying, whining, and complaining at support groups? Yes, there is some of that, because support groups are safe places for these emotions. Sometimes, it’s the only place for PALS or CALS to find others who can relate in a non-judgmental way. But there is camaraderie, inspiration, useful information, and even humor. If you can’t travel to a support group, join an online group. You will be amazed at how good it will feel, to have a place to express your concerns, and even help others with theirs. Being part of the ALS community will relieve you, empower you, and un-isolate you.
Fern Cohen is a former teacher and a writer with ALS. She frequently writes guest posts for The ALS Association Greater New York Chapter’s blog. Read Fern’s blog, “Forced to Sit Still and Shut Up — Life Before, and During ALS” at http://xr.com/fern. You can also follow Fern on Twitter at http://twitter.com/fec139.
To visit the ALS Association Homepage and learn more about ALS, click here.