Does illness have to lead to isolation?

We live in an age of technology where people now expect instant feedback and instant connection. Yet, when you are sick, staying in touch is difficult. Whether you are ill because of some mental health issue like depression or a chronic medical illness like MS, it is easy to become isolated. Connection with others can well become compromised. The unpredictable course of many illnesses such as colitis, bipolar disorder, crohn’s disease, rheumatoid arthritis, diabetes and social anxiety means that one day, the ill person has it together and the next day, they do not. Even the person who is sick may not be able to predict from one day to the next, how she will feel. As a result, it is hard to keep plans and to stay in touch. Plans may end up being cancelled last minute, e-mails and texts may go unanswered and phone calls may not be returned for weeks at a time. As one client with chronic fatigue syndrome said, “There is a lot of apologizing that goes with the illness…after so many cancellations, the question becomes should I make plans at all?” Yet psychological research reveals hands down that social supports play a fundamental role in easing the stress of illness. How can we get better at supporting those who are suffering out there?

A real difficulty that can result in people with chronic medical illnesses and mental health conditions being misunderstood is that often the symptoms of these illnesses are invisible. The person looks O.K. and so it is hard for others to fathom why it might be that they are cancelling arrangements one more time. In truth, however, it just may be that the individual has used up every ounce of energy they have just to get through the day and that they literally have nothing left over to give to anybody. Depending on the type of illness, the fatigue may be too great or the pain may be too disabling or the feelings of anxiety and despair may be too overwhelming to make connection possible. For many, their lives have become very constricted and so they may feel that they have little to contribute when it comes to conversation. Sometimes, people who are sick fear becoming a broken record or a burden to others. Even when friends have been empathetic, after awhile their tolerance may wear thin. So what can be done about this very real problem of social isolation that tends to accompany illness and often just compounds the stress?

For one, people need to become better educated and more sensitive to the social and emotional fall out that accompanies illness. The symptoms may be invisible yet many of the conditions mentioned are so very prevalent. Both sides are vulnerable and the effort to increase understanding is a two way street. Health professionals and the public at large need to make every effort to listen and learn more about these illnesses and their impact. Those who are ill, need to be more vocal and forthcoming with information. When my clients complain about feeling misunderstood, I will often say to them: “People can only understand as much as you are willing to help them to understand.” With the availability of technology and the wealth of information that is now available, send them an e-mail that best describes your situation and the nature of your illness. I had one client with Bipolar Disorder send friends and family a YouTube video that he felt described his manic episodes spot on. Another client with PTSD after years of estrangement from friends and family, wrote a letter describing the devastating impact that this illness has had on her and her relationships. Granted, some people may not be receptive yet others will be and it is important to steer oneself towards those who want to understand and be supportive. A liability is that keeping illness a secret from those who love and care about you, can fuel shame. The clients I see who seem to fare the best are those who have been able to speak out, talk about their illness, access support groups on-line, be seen and tell people the ways that their condition compromises them. While not everyone might be empathetic, this is the only way to gain support and be validated. As one client with MS put it: “The illness may be invisible but that does not mean that you have to be!”

Communication is key. When someone is ill, do not be shy about asking what is going on. Do not make the mistake of assuming that they don’t want phone contact or company. This may just fuel their sense of isolation. Ask them what they need and don’t forget to ask as well about their partner and children who may be experiencing isolation as well. If a friend is not responding to your attempts to initiate, do not assume that they do not want contact or that you have done something to offend them. Check it out. Only by sharing information about the situation can there be some attempt at forming creative solutions. Maybe the person who is ill just needs you to accommodate them for awhile by coming over to their place where they can be more comfortable. Maybe, there simply needs to be a mutual understanding that for a time, connection will be minimal or on hold; maybe brief, spontaneous contact when there is a window of well being can be arranged; or maybe the relationship will be lopsided for awhile with the well person doing the giving and the person who is compromised, receiving and maybe, just maybe, that’s not only understandable but it’s O.K. As one wonderful mentor explained to me, giving and receiving is not necessarily tit for tat. Instead, it is like there is one big pot of resources out there and you take when you need and give back when you can. When I told her that I did not know how I could ever possibly repay her for the help she had given me, she replied: “One day somebody is going to need the kind of help that I have given you. All I ask is that you be there for her and pay it forward.” You know what? Indeed, as life turned out, she was right!

3 responses

This is very well written, as usual, and packs a punch. The only thing that I would speak to, other than educating others, is actually encouraging oneself to reach out and make contact, at times when it is less difficult to do so. Checking in with friends on a regular basis, just for a brief chat or update, reminds those who don’t see you that often, that you are thinking of them. What I have found personally helpful, when I feel isolated, is to just make a short call to a number of people to let them know that you are also thinking of THEM. Then the relationship does stay reciprocal, even if you are a greater beneficiary of support. In a nutshell, never, never take a good friend for granted. Speaking of which dear friend and colleague, your birthday is coming up and I would like to wish you a wonderful day and a happy year! Your articles are invaluable, and so is your friendship.

Great article, thanks for bringing this issue forward!
For me with CFS/ME, I also have to accept that a lot of people are just not going to get it and if you have other things in common, then that can be the basis of the friendship and you just have to accept the limit or let the friendship go.

Also the medical system has to step up and be more supportive of people with complex illness and the impact of multiple symptoms. If the doctor’s aren’t getting it, how can our families and society in general understand?

Asking how we can use the technology better to make connections and reduce isolation is a great step forward to provide connection and help to form regular support groups, more resources are needed in this area.

Thanks for the blog!

I thank you both for your additive commentary.
Much appreciated!

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