Social/Cultural Effects of Chronic Illness
Along with psychological and physical effects, social effects also need to be taken into account. These challenges will be both in how the team may or may not interact with the patient (our hero) as well as key players in supportive roles and how the support members connect to and draw support from the social network.
Keep these two main ideas in mind when it comes to social connection and the effects that having a diagnosis will have. Everyone already tends to keep an eye on the social aspect of everyday life. Whether we realize it or not, we are always continually ranking ourselves socially for a variety of reasons. From maintaining connections for possible use in the future, such as finding a job or an expert to help with an issue, to developing and maintaining relationships that help to support our mental and emotional well-being and making our lives more meaningful.
Having a serious diagnosis will make maintaining these connections all the more difficult. It is hard enough finding time to catch up with friends without such a significant challenge. Now an added set of obstacles needs to be addressed.
It is not unusual for those going through the challenge of a serious diagnosis to move their focus away from the usual way in which we connect to others. In some cases, the main focus is on surviving the whole ordeal. In others, it is trying to learn how to accept and cope with new and possibly permanent features, such as ongoing pain. That is where the focus will be for a time, and no one will hold anything against you for solely focusing on those issues.
You will now have to prioritize where you focus your time and energy even more so than usual. Activities like a bowling team, a professional association, a church group, neighborhood gatherings, or a game night will most likely, at first, be put on hold. Most will understand, try to relate, and will offer support in any way that they can.
This willingness to support and relate, however, will often decrease over time, and some people in your social network might even begin to avoid you due to their inability to deal with their own discomfort. This is to be expected. You may have experienced this yourself when you think back on someone you knew who became sick and stopped attending a social event. This disconnection can be accelerated if you are less inclined to ask for help. You will be setting the tone and behavioral patterns—something that, once again, is totally acceptable, so just be aware of the effects.
Some places that offer a tight network of social support, such as a church community or a support group dedicated to addressing your specific diagnosis, will be of particular importance since it is their primary objective to be there when needed. Consider joining such a group particularly if it has a therapeutic aspect to it. Many have reported finding respite and a sense of purpose, even if they were only able to attend once in a while. Be sure to draw upon this support system to enhance your resiliency. It is the reason such networks exist in the first place.
Be careful of some groups, especially those found on the internet, since if they are not overseen by a helping professional, they may have more of a venting slant to them, which, while useful at first, sets up a negative feedback loop in which those attending are constantly bombarded with a sense of hopelessness and dread.
Internet groups have one extra consideration: since you are not sitting face-to-face with individuals, people tend to feel less inhibited by social norms and can become highly reactive, impersonal, and negative (think Facebook). Suitable groups will allow for some venting but will often work to turn the focus on more positive aspects, such as the tools found within this book.
Whether you choose to connect to such support groups or anyone else, for that matter, is up to you. Each individual in your social circle will react to your situation differently. You will be tempted to assume that those who have experienced something similar will be the most understanding and supportive. In most cases, this will be true, but, for others, your quest is a reminder of their own painful experience, and they may not be ready to jump fully in for you.
Look to the positive side and take whatever is offered. If someone does not have the capacity to support you in the present moment, look for others who are willing to step in. The rest will often come around when they are ready. Let them help in the best way that they can. They usually just don’t know what to do or say. Be courageous and open and let them know what you need.