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When Family and Friends Don’t Understand Lymphoma

Medically reviewed by Todd Gersten, M.D.
Posted on June 23, 2022

Relationships tend to shift with a major life change like a lymphoma diagnosis. Friends and family don’t always know the right things to say or do. Some of your connections may grow stronger, while others will fade away or break. Communication is essential to navigating challenging times successfully.

Your cancer diagnosis has a ripple effect on everyone who knows and loves you. Realizing and accepting that some change is unavoidable can make it easier to ride the waves. Many of the people in your life may have little to no experience with lymphoma or other cancers. They are learning how to cope with your diagnosis for the first time and may make mistakes along the way.

When friends and family don’t understand the difficulties of lymphoma diagnosis and treatment, there are ways to help bridge the gap. In some cases, you may find outside support to be a source of strength.

Reacting to Insensitive Comments

Cancer is a delicate topic, and people are bound to let you down sometimes by saying the wrong things. Whether it’s an upsetting story about someone else’s cancer or an invasive question, you may be caught off guard when a comment rubs you the wrong way.

As one member said, “Have you had friends tell you how happy they are for your diagnosis? I just had a friend tell me she is smiling to think of what I have because it could be so much worse. I’m sure there are worse diagnoses and I am just at the start of my journey, but I am in tears at how insensitive it seems to me.”

If you’re not sure how to respond, you could always take a deep breath and ask, “Why did you say that to me?” This question puts the responsibility back on the other person, giving them a chance to reflect and be accountable for their words. You want to give friends and family the benefit of the doubt in assuming they didn’t mean to hurt you. However, it’s not your job to protect their feelings if they are rude or insensitive to you. You have every right to stand up for yourself and make it clear if you’re offended or hurt.

Responding to Unwanted Advice

You can respond to unsolicited advice about your care by saying that your doctor has advised against discussing other treatments. It’s also acceptable to let someone know that you’d “rather not talk about that right now.” Those who care about you will learn to respect your boundaries and feelings.

Dealing With Shifting Roles and Responsibilities

Family members may be resistant to taking on additional responsibilities. By doing so, they have to acknowledge that your cancer is real and that you are struggling. They also may feel resentment for having to learn new tasks or act as a caregiver. Just like you, they didn’t choose lymphoma. They may misdirect their feelings of anger about your cancer at you as a person. With some patience, understanding, and openness, you may be able to get to the root of the issue and respond with mutual compassion.

Here’s where communication is crucial. It can take time and effort to discover the underlying reason for our emotions. In a stressful situation, such as having a loved one with lymphoma, many people lash out or react in unexpected ways because they haven’t had a chance to process their own feelings. If you see signs that friends or other family members are struggling, encourage them to get help. Loved ones and caregivers need support too. They may need to talk to someone individually or as a family to figure out how to adjust to the changes that cancer brings.

Together you can work on a realistic plan where all the household responsibilities are taken care of, but no one is overburdened or overwhelmed. This solution can include saying no or adjusting your expectations for how certain things are done. Reaching out for help beyond your immediate family (such as hiring help or asking your health care team or a social worker for community resources) may ease the pressure on family members and maintain everyone’s quality of life.

Managing Friends Who Do Too Little or Too Much

Everyone reacts differently when a loved one has cancer. Some may seem to disappear, while others might not leave you alone.

Friends could assume you want alone time or avoid you because they feel uncomfortable and don’t know how to help. None of these are excuses to abandon a close friend —but unfortunately, that sometimes does happen.

Letting your friend know that you’d like some company and offering suggestions on how you can spend time together will give them guidance on how to support you. A good friend will take your hints and follow your lead. Still, you may find yourself disappointed in others who continue to keep their distance. After you’ve made an effort to reach out, you shouldn’t feel obligated to continue pursuing the relationship.

There can also be cases of the opposite: a well-meaning friend who goes above and beyond once they find out you have lymphoma. The extra support can be nice at times, but it also makes it hard to communicate when you prefer time by yourself. You may be afraid you’ll hurt your friend’s feelings if you don’t accept their phone calls or assistance.

One member of MyLymphomaTeam explained why it’s tough for them to say no to friends: “Friends see me and want us to join them for visits. I feel bad when I decline their invitations. I feel like I am constantly explaining why it is not a good idea for me to be exposed to others. I feel like once I accept an invite, everyone else will want us to visit with them too.”

Your friends may not realize that immune system suppression is a common side effect of living with lymphoma. If you have a low white blood cell count, you may have to limit your time with large groups. It may be frustrating to feel like you’re explaining the same things over and over to your social group. However, taking the initiative to start an email chain or weekly Skype meeting will show your friends that you still want to stay in touch even if you can’t meet in person right now.

Talking With Others Who Understand

Sometimes, you may find the best solution is reaching out to others who understand you because they’re going through similar experiences. As one member of MyLymphomaTeam said, “It is very sad to me when people have lost ‘friends’ after developing cancer. Those of us who have supportive friends and family are very fortunate. However, it makes it even better when we have friends who are traveling down the same paths we are.”

MyLymphomaTeam is the social network for people with lymphoma and their loved ones. More than 11,600 members come together to ask questions, give advice, and share their stories with others who understand life with lymphoma.

Is life with lymphoma putting a strain on your relationships? What advice do you have for others? Share your experience in the comments below, or start a conversation by posting on MyLymphomaTeam.

Posted on June 23, 2022
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Todd Gersten, M.D. is a hematologist-oncologist at the Florida Cancer Specialists & Research Institute in Wellington, Florida. Review provided by VeriMed Healthcare Network. Learn more about him here.
Anastasia Climan, RDN, CDN is a dietitian with over 10 years of experience in public health and medical writing. Learn more about her here.

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