Feeling alone after a cancer diagnosis? Here’s how to break through that isolation

Many of my patients here at UT MD Anderson report feeling isolated. Whether they’ve just received a cancer diagnosis, are in treatment or have finally entered survivorship, this is a very common complaint.

But why are feelings of isolation so common among cancer patients? And, what can you do to ease yours?

Here, I’ll answer these questions and share tips to help you feel connected again and find the support you need.

Why you might be feeling isolated

Let’s start with why you might be feeling isolated. If you’re a cancer patient, there are many possible reasons. These include:

• Medical reasons: Being immunocompromised can make you worried about getting sick so you avoid being around other people.
• Physical reasons: Side effects like fatigue, pain and GI upset can make you want to stay home.
• Emotional reasons: Body image issues like hair loss or changes in your appearance can make you feel self-conscious or not like yourself.
• Psychological reasons: Feeling like nobody really understands what you’re going through can make it hard to socialize.

On the flip side, you might feel isolated not because of anything internal, but because your support system has withdrawn.

Sometimes, everyone kind of assumes all is well and that you’ll go back to your old life once you’ve finished treatment. Other times, people back away when they see you struggling because they feel powerless to help, or they’re afraid of saying the wrong thing. Still others avoid sick people in general because they find it painful, or they don’t want to get too close to someone they’re afraid might die.

People have all sorts of reasons for pulling back emotionally. None of them is your fault. But this can make survivorship particularly challenging. Because you may be feeling better and ready to socialize, but cancer is still a part of your life.

How to deal with feelings of isolation

So, what can you do about this feeling of isolation? Here’s what I usually recommend.

Make better use of your ‘good’ days

How you feel during and after cancer treatment can vary. One day, you might feel pretty good, while the next, you feel awful. So, start keeping track to see if you notice any patterns.

Once you’ve identified when your good days and rough days are most likely to be, don’t wait for other people to plan activities. If you know the day before your next chemo infusion is when you’ll probably feel your best, call a friend and suggest that you meet up for lunch or a movie that day.

Make the most of your existing support system

Sometimes, patients and survivors go wrong by seeking support from people who are simply not capable of providing it. Then, they get disappointed. So, think about what you really need. Then, think about which friends and loved ones are best suited to providing that type of support.

If someone is a really good listener, for instance, you might ask them to join you for your next doctor visit and take notes. If another person is very organized, you could ask them to help manage your medications or side effects.

Just keep in mind that the people who are good at doing those things might not be the same ones you’d call late at night to vent your darkest fears. So, be realistic. And, if you still have unmet needs, ask yourself, “Is this a case of needing to actually expand my support system, or just looking again to better manage the one I already have?”

Get comfortable with asking for support

A lot of people say things like, “Let me know how I can help,” or “I’m here if you need me!” But that doesn’t really get you anywhere. So, take them up on it and be specific about what you want.

You could say something like, “Great! I could really use a ride to radiation therapy next Tuesday. Can you take me?” or “Can you set up a meal train for me and my husband through the end of August?”

But you have to be pretty proactive because people want to help. They just might not know what to do. And, if you keep waiting around for them to figure it out, you might be disappointed by what you end up with.

Find a support group

Many patients tell me it’s only when they come to UT MD Anderson that they finally feel normal, because nobody even bats an eye here if you’re bald or wearing a head scarf. Out in public, they feel like they stick out.

Support groups can offer you that same warm sense of belonging, whether they’re in person or online. When other survivors and caregivers share their experiences out loud, it can be really validating to hear that someone else thinks or feels the exact same way you do — especially if you thought you were the only one.

You can find more information on available support groups here.

Other support options available

There are many other ways to connect with people who “get it” though UT MD Anderson. Here are six.

• The Art Space for Patients and Caregivers: Take classes or work on creative projects alongside other patients and visitors.
• CancerConnection: Grab a free cup of coffee or a snack and chat with one of our volunteers. Most are either cancer survivors or caregivers themselves.
• myCancerConnection: Get one-on-one support from someone you can really relate to through this volunteer matching program.
• Integrative Medicine: Sign up for classes in music therapy, yoga therapy, tai chi, xi gong and more. Most are still virtual, so you can access them from the comfort of your own living room. You can even schedule them yourself using MyChart. No referrals necessary.
• Adolescent and Young Adult Program: Because cancer occurs more often in older adults, it can feel very lonely to face cancer as a young adult. I can vouch for that myself, since I was diagnosed with Hodgkin lymphoma at age 21. At every cancer-related event I went to, I was the youngest person in the room by decades. So, this program addresses the unique needs of patients ages 15 through 39.
• UT MD Anderson's Boot Walk to End Cancer®: Join a team or form your own, and be part of a community of people raising funds to help end cancer. You’ll feel an immediate sense of belonging and excitement when you join thousands of other walkers for this 1.2-mile event.

I can’t tell you how many people say they’ve developed lifelong friendships with people they've met here at UT MD Anderson — whether it was by striking up a conversation in the waiting room or through activities, programs and events like those mentioned here. But these are just a few of the many ways you can connect with others and break out of your isolation. If you need more suggestions, talk to your care team or reach out to Social Work.

Catherine Powers, Ph.D., is a licensed clinical psychologist in our Integrative Medicine Center.

Request an appointment at UT MD Anderson online or call 1-877-632-6789.