Join a Group to Manage Your Illness

Support is within reach if you look. Don’t worry that you’ll find meetings depressing or be required to speak or criticized.

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. Science shows that feeling supported cuts 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.

YOU MIGHT ALSO LIKE: Our Cancer Care section

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,” and “older than 60 years with cancer.” 

MyHealthTeam 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.

In a good support group, you won’t be pressured to speak before you’re ready, and other members will quickly put a stop to any critical comments.

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.

Now that more people have the ability to go online, you have more options than ever before. Simply participating in a message board can be helpful. Online video meetings and chat groups don’t require travel.

Groups have different formats, and you can explore until you find one that feels best for you. Some are led by mental health professionals, others by their members. “12-step” models began to support people with alcoholism and today is the most successful form of treatment for that illness. Although they tend to include the term “higher power,” many members do not believe in an all-powerful God. These groups are free and led by their members.

Some groups focus on mindfulness practice training, keeping you from getting lost in the past or future, or worry. Others simply give everyone an opportunity to talk about what’s happening for them related to an illness.

You can find a group by checking with a hospital where you are receiving treatment, an association for your illness, or more broadly defined associations, which include Mental Health America. You can find online therapist-led groups through Psychology Today. Supportiv will match you with chat groups with a moderator.

Are you the kind of person who is used to being busy and useful and feels 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.

YOU MIGHT ALSO LIKE: Finding Support for a Mental Illness