Isolation and Interpersonal Support[Ed. note: this essay was originally posted on a CFIDS support email list.]
I want to talk about the issue of interpersonal support and the importance of chat upon the lives of PWC's, especially those who have become housebound if not as well technically bedridden by the DD.
One of the things that the DD inflicts on people is social isolation, and this occurs regardless of whether or not the person afflicted is still able to function in a work/school/social environment or not. Interpersonal interactions are curtailed by such things as Brain Fog and exhaustion. When you cannot follow a conversation in the first place it becomes impossible to take part in it in any meaningful way. Also, when a person is feeling unwell, they are less able to participate in any kind of interpersonal interactions at all.
This means that isolation results. A person can be very isolated even when sitting in a crowded room amidst a flurry of action and interaction. Isolation brings with it loneliness, and the mourning of the life that was. When there is nothing available to replace these missing elements of healthy everyday life, depression can occur which is compounded on by the pain and suffering being inflicted physically by the disease itself. Left unmediated, despair can result. Left unmediated, death can result.
The problem of isolation can be addressed on several fronts. Usually it is the physical front that receives the greatest deal of attention, in the context of meeting with the individuals most pressing of physical needs. Help with meals, housekeeping, nursing care, etc, are all very important, there is no doubt of this. But the area of companionship and interaction with others on a social level no less as crucial as getting the physical needs met.
Pets are one of the ways that people cope with physical isolation. Dogs, cats, iguanas, birds, rodents, and even goldfish.. all provide the physically / psychologically isolated person with not only companionship but with physical contact with another living being. Pets give people a reason to get up in the morning, and often a reminder that they should eat to as they remember to feed their animal companions each day. These creatures become the family of their humans, sometimes the only family the humans ever have contact with any more. Some of the pets are also service/care givers... the work of dogs in this regard, and monkeys is well known. Cats can also fill roles in reminding their humans to eat, that there is someone at the door, or alerting their humans of dangers such as fire.
But as important a role in the lives of isolated PWCs that pets may play, they are unable to fill every need. There is still the need for communicating with other human beings and for intellectual stimulation and play. Through chat and banter, friendships are formed and the walls of isolation are broken. Having places available where this kind of discussion can be carried on is of the upmost importance in the breaking of feelings of social isolation and dispelling feelings of rejection and despair.
But where should such banter take place?
I feel that email lists have an important role to fill in this regard. Email has this ability to provide a means where by such things as physical distances and access to the newest in computer technology does not necessarily restrict people's ability to communicate with one and other. Use of the computer keyboard also allows people to compensate for slowed mental processes that make thinking itself a laborious chore and speech clarity an exercise in frustration.
The use of space on email lists for this type of communication has been a topic of controversy of late. Some people feel that an email list is no place for this type of dialogue to be taking place. I strongly disagree with this narrow view of the reality of life for many if not most PWCs.
Consider for a moment the Newbie who is lurking on the list. This person has yet to make any friends in cyberspace, and is shy about engaging in any conversations. This person may be very isolated in their day to day existence, and may be suffering greatly because of it. There are many people on the list who would gladly reach out to the Newbie, but because of the Newbie's silence no one knows that the Newbie is there... let alone in need. The chat threads are being followed by this Newbie, and the joking and conversation allows for the person to begin to feel that they know the folks who are chatting back and forth. Feels of inclusion begin to take the place of those overwhelming feelings of exclusion. The Newbie may even decide that here is a safe place to be, and enters into a discussion, asks a question, or even starts talking with listmembers off list. With these opening lines of communication, with people who are being openly seen as having similar interests and similar problems... these lines dispel the isolation, dispel the feelings of despair. And in the process of making friendships support systems are built and lives are ultimately saved.
It is too late to talk of advocacy for PWCs who have died from isolation and despair. If we do not allow for a breaking of the isolation, are we any better than those whom we aim our advocacy work against... the ones who would prefer we all just silently crawl into our holes and disappear?
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