Join a Group to Manage Your Illness

By Temma Ehrenfeld  @temmaehrenfeld
October 05, 2015

Support is within reach if you look.

Illness eats up time, energy, and attention. Some patients get caught up in chores, research, and seeing doctors. Others can’t do much at all. You may assume your conversation will be painful or boring and let friends and family fade from your mind, feeling you have nothing to give. Meanwhile your usual activities, including work, may be out of reach, along with the larger network of people you saw as part of your routine.

It’s easy to isolate yourself — but unwise. Human beings are social animals; we’ve evolved to rely on each other. We need each other most when we’re suffering. Much science shows that feeling supported can dampen the negative effects of stress.  When the news is disappointing, people who feel backed up and appreciated are less likely to jump to the worst conclusions, and more likely to cope in healthy ways.

But even your immediate family and close intimates may not know how best to help — so be candid. For example, if you’re worried that visits will tire you out, instead of refusing guests, say, “Can you come Saturday at 1 p.m. for a half hour or so?” If a friend focuses too much on medical advice, you might say, “I need to think about something else. Tell me about the kids.” If you need phone calls to come earlier in the evening or later in the morning, say so.  

It’s especially important to let other people distract you when you get caught up in loops of worry.  Many of us replay painful events over and over, pondering their meaning and causes. Psychologists call this “rumination” — and see it as a major cause of depression. You may think your illness is a sign that you’ve failed in some way. Intense self-analysis may appear as a form of problem-solving, but it can feed procrastination and delay action. In one study, for example, women who ruminated took 39 days longer to bring symptoms of breast cancer to a doctor.

To find a local in-person support group, often led by a social worker or nurse, ask around. You might try your doctors, a patient advocate at a hospital where you receive treatments, patients you see in waiting rooms, and local community services groups. Through New York City’s Memorial Sloan Kettering Cancer Center, for example, patients can meet on each inpatient floor, join outside groups for cancer survivors, or participate in online forums.

Locating an online forum may be as simple as typing your condition into “Google.” Type in “breast cancer,” and you’ll quickly see breastcancer.org, which has separate message boards for “not diagnosed but worried,” “waiting for test results,” “just diagnosed,” and “help me get through treatment,” and more.  MyHealthTeams has networks for people facing lupus, multiple sclerosis, autism, and breast cancer, among other challenges.

Its two co-founders make the case that a network will help your health, not just console you: “We believe that when people facing the same chronic condition are able to connect with and learn from each other, ask questions, get referrals, and share tips with other people who personally understand what it’s like to face that condition, health outcomes improve. You’re not alone, and you don’t have to re-invent the wheel. In a few years’ time, we believe that if you’re diagnosed with a chronic condition your doctor will prescribe one of our social networks. The evolving healthcare system is not set up to provide the day-to-day validation, perspective, and practical tips that patients can provide each other, and a growing body of evidence is showing that strong social patient networks lead to improved health outcomes.”

A support group doesn’t have to be a bath in grief and anger. If you’re feeling shy, start by focusing on information. Members can be a fast track to referrals or reviews of medical services you’re considering. As you get to know each other, you may open up. If your group works well, you’ll all be uplifted by courageous stories and cheered by each other’s good news. Genuine deep listening makes us feel connected again.

Many people who become ill are used to being busy and useful and feel humiliated sitting around in waiting rooms or getting treatments. Supporting others is also a way to make good use of your time, refreshing your energy and self-confidence. One open-hearted inspiring member can make all the difference. That person could be you.


April 01, 2020

Reviewed By:  

Janet O’Dell, RN