Loneliness, illness, dementia and support groups

Yesterday I talked about how lonely and isolating it can be living with a diagnosis of dementia. One reader and friend overseas emailed me with her support and friendship, and also shared her own recent terminal diagnosis. Another reader made some very pertinent comments, and shared some links about it. One comment, “the loneliness in facing your disease ‘alone’ … sure, you have people around you but it’s only YOU who feels and deals with each symptom, each setback ….. each experience” makes me want to explore further the loneliness of illness or a major crisis. This is why support groups were started, for people who have been diagnosed with a similar illness, or been through a similar experience, for example victims of crime, suicide loss, or the loss of a baby to Sudden Infant Death Syndrome. These groups work so well because each member can truly relate to each other.

And yet, even with the support of people who have been/are going through a similar experience, there is a real sense of loneliness. For the friends who do still support you, there is an unspoken bridge between you now because of your illness or loss. They cannot possibly know how you feel, and although they can still be there for you and love you, something changes. And then, the people who are going through the similar illness or loss, will react or respond differently, and so a support group may not work for some. My husband detests support groups, because he feels it highlights too much what is happening to us, and is simply too confronting for him. With dementia, no-one is getting better, and so the support group does tend to highlight the absolute reality of what is happening. With a loss through death, a support group works for many, because ultimately you do see others heal, and learn from them about your own grief, and how to help yourself heal.

In an essay An Existential View Of Loneliness,Tim Ruggiero’s final comment was this; “So loneliness, on this reading, isn’t something to be shunned or afraid of: it is, rather, a possible catalyst for a more purposeful and engaging life, and an avenue for heightened self-awareness.” Thanks iolanda for leading me to this, as it probably says perfectly how I feel about it, even though some days dealing with loneliness can be quite challenging. At the end of the day, we are who we have to spend the most time with [inside our heads and hearts], and so getting used to that, and accepting the loneliness as a catalyst to enhance our experience of life and our humanity seems the perfect way to deal with it.

4 thoughts on “Loneliness, illness, dementia and support groups

  1. I understand what you’re saying about real-life support groups – they are very confronting. I am a member of a few online email support groups and these are much better ……. they are great given i am housebound, and I can choose how “close” I get to the group and each person that posts a message. But I can still feel a connection to others going through the same thing and this is very “conforting”. The messages aren’t depressing …. just black and white text emails asking for advice and I don’t have to physically see people in front of me that maybe a reminder of what lies ahead for me ….. which is what happens in a real-life group.

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  2. I agree with your husband about support groups, as they make the loneliness feeling worse by putting you in a box, isolated from mainstream society. I have to accept that I have been left alone for now, and get out there and be involved with family and friends plus thankfully I am still able to work which involves me with a diverse group of people. I am interested in Tim Ruggieros closing comment, as on reflection of the past 4 years, when the loneliness hit hard, I have had to become much more motivated from inside.

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    • Thanks Jeff, and your comments about the value of still working is one of the reasons I encourage my husband to stay at work. Plus, if I do deteriorate suddenly, then he will have something to keep himself busy afterwards. Trying to get back into the work force in his mid or late 50’s would be almost impossible. Read on with Tim Ruggiero, plus the other links in the comments from yesterdays blog, very interesting.

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