The Problem I've Noticed With Some Online Cancer Support Groups

For the first six years after my diagnosis with cancer, I had an absolutely unbending, unyielding, no exceptions (mostly) rule: Avoid all cancer-related topics on the internet at all costs. My concern was that, as you may have heard, not everything on the web is 100% accurate.  And even when the information you stumbles across is correct, determining whether it is applicable to your individual
cancer is very difficult for a lay person to assess.

A corollary to this rule, which is admittedly rather selfish on my part, is that I had avoided any type of support group for others with cancer, and my type (or brand, if you prefer) in particular. My rationale for this was simple: I am simple. I feared that by meeting someone whose condition was significantly, much less substantially, more serious than mine that it would only cause me to experience a range of troubling emotions, including guilt and, most self-centeredly, worry that I too would be in the same boat before long. Worrying has always been one of my top talents; consequently, I really need no assistance when it comes to creating other causes of concern.  So to be presented with someone else’s serious situation – and thus confronted with the very real possibilities that my cancer can devolve into – was something I feared.

At the same time, but on the other end of the spectrum, I worried about meeting those with my condition who were much better off than I was. Although I was watch and wait (or is it wait and watch? I can never remember) for about five years, I know there are some who are fortunate enough to have essentially indolent cancer. Indolent, in the vernacular, means of course lazy. And although I have been accused of being indolent from time to time, apparently my white blood cells are cut from a different cloth. Thus I was quite concerned that I would be, to be blunt, jealous – jealous of others who have the same cancer but who need not really worry about it at all, whereas I was constantly watching my lymphocyte count climb in the least of lazy ways.

Notwithstanding all of the above, after enduring six months of chemotherapy, my views on being connected to others with cancer began to subtly shift. I was not to a stage where I would actually attend an in-person get-together of other people with cancer, in part because it might get too heated for me too quickly with no easy means of escape at my disposal. Rather, to ease my way into this world, I joined a few cancer groups on the internet, including a couple for people with my specific type of leukemia. I figured misery loves company.

At first, I found these groups, if not exactly helpful, at least quite intriguing. It was fascinating, in a somewhat morbid sense, to learn of all of the different manifestations of cancer and treatments that so many had experienced. More importantly, I felt that I could contribute something. This was quite an important – yet unexpected – development. I say this because, as one with cancer, I so often had felt helpless and dependent on others. Being in a position, particularly after having endured treatment – which many of my fellow “group” members were only beginning to have to contemplate – allowed me to feel as though I had something to offer someone else for the first time in eons. I would, when it seemed appropriate, offer my own experiences to help others understand part of the realm of possibilities that one can face with this cancer.

Yet, it is one thing to offer support and share one’s own experiences in an attempt to help others feel better about the situations they face. It is quite another to play doctor. Although the line between these two may be somewhat blurred at times, I quickly became cognizant of a number of outspoken (to put it politely) individuals who apparently viewed themselves as not only doctors but the definitive expert on our cancer. These people were so absolutist in their positions that I actually would read their personal profiles to see if they were indeed esteemed members of the medical profession. They were not. They were, no matter how well-intentioned, just self-assured of the correctness of their position.

But they were not correct – at least not always. A couple of the most assertive (I’m running out of polite terms to employ) insisted that certain treatments should no longer be used and that in fact some actual doctors “never” use them. I found this both irresponsible –as I knew it was not true – and personally upsetting.  Admittedly, one of the treatments that was on their ex-communicated list was the one I had just endured. Did my doctor – who does nothing other than treat my type of cancer and is a world-renowned expert in the field – make a faux pas? Of course not. Yet the irresponsible and unyielding position of some of these who spoke loudest (last euphemism) gave me, at a particularly vulnerable time, unnecessary and most definitely unwanted cause for concern.

Fortunately, I addressed this with my doctor who explained – once again to me (she is really wonderful) – why my treatment was appropriate for me. Plus I have the benefit of being married to a doctor; she is not an oncologist but I often force her to play one at home. Others on these Internet groups, however, are not so fortunate. They are new to the diagnosis, new to the range of possible treatments and new to the fears and uncertainties that plague all those afflicted with cancer.  And frequently these individuals do not have the benefit of having a true expert on our disease, thereby making them more susceptible to the partially-informed, at best, views of lay people posing as experts.

Although I disengaged from these groups – there are plenty of others where people do not act so irresponsibly – it bothers me to this day that by being assertive one can seem so authoritative. I hope those who are truly seeking and in need of actual answers recognize this and do not fall for someone’s postings just because that person is loud (and doesn’t have any typos in his/her postings).