The Pros and Cons of Internet Chronic Illness Support Groups

Written by Dr. Sandeep Gupta

I have been surprised to find that the internet, and particularly Facebook, now hosts a range of support groups for almost any type of chronic illness. Often there are no admission criteria, so the diagnosis may not have to be made formally for an individual to join a such support group.

Instead the members may be self-diagnosing or dabbling with a diagnosis. On the upside sometimes there is quite innovative information available in these groups, but the information presented is not always balanced or scientific.

Depending on various factors being part of one of these support groups can have both positive and negative consequences for the patient. A systematic review of studies on online support groups found a lack of evidence to support their benefit or detriment due to a lack of quality studies evaluating their effect in isolation.

Pros:

• Social support/easing loneliness. Many with chronic illness are unable to work, socialise and participate in family functions as they once did. Feelings of isolation and loneliness are common. Interacting with and forming friendships with people on Facebook or other forum platforms can help dramatically in this area and is a lifeline for many people. There is often comradery and closeness among fellow patients that is powerful and people discover an amazing source of support.
• Understanding/recognition. Many people feel that their friends/family/partner do not understand what they are going through. Chatting online to others in similar situations can provide needed understanding about ones symptoms and the challenges that result from them.
• Information. Facebook groups can be a valuable source of information. People may share books, videos, articles, health professional recommendations and treatments which have helped them in similar situations. This can be valuable in areas of medicine that are new, innovative or on which information is not readily available.

Cons:

• Identification with the sick role. If you frequent these groups a lot you may find that your identification with your illness, and the role of being unwell, increases. This can play a detrimental role mentally, as identifying with your illness and adopting it as part of your personality may be an obstacle to recovery. This is due to the fact that there can be a secondary gain in staying unwell, as it maintains this newly formed identity.
• Politics. Some groups carry politics of different points of view, different camps, and there can be negativity and rivalry between groups.
• Excessive use. Some people use these groups excessively, displacing non-health related and more enjoyable activities. In some instances people can end up spending the bulk of their time reading and talking about their illness, or chatting on Facebook, or being involved with awareness raising. Overly focusing on thinking about health problems and having a lack of more pleasurable activities in your day can have a negative effect on a person’s emotional wellbeing. Facebook and social media addiction are probably an under-recognised problem, particularly in teens and young adults. Here is another article about this phenomenon.
  
• Negativity. Some groups are very negative. Depending on the group and your reaction, you may find scrolling through recent posts leaves you feeling hopeless, fearful or overwhelmed about your situation, or simply in a low mood due to spending your time reading negative posts.
• Misleading or incorrect information. Of course not all information posted by others is good information or good for you. Some people have heard others speak about specific treatments and tried them only to worsen their health. Others have avoided treatments which may be beneficial to them due to reading inaccurate and one sided reports about them.
• Information from people with a financial or other agenda. Some people may post information due to an agenda to gain sales, gain popularity for their book or website or to promote a personal theory. Their information may be lacking scientific or even anecdotal support.
• Delaying seeking professional advice. In some instances posting to a internet support group about your symptoms can provide a false sense of reassurance, while really contacting your health professional is a much more appropriate line of action. In some cases, this could delay seeking life-saving emergency treatment or advice. Even though this may be rare, it is worth being aware of.
  

References.

1. Gunther Eysenbach et al. Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions. BMJ 2004;328:1166.