Ask the Expert

Q - I have lymphedema. I think I know how I got it post cancer and now am constantly worrying about all the things I can and can't do. It has certainly curtailed my social and physical activities.  Will I ever feel normal again? 

A- Yes, you will – but it will be a ‘New Normal’.

Go to books, reputable websites, and your healthcare team for the latest information about lymphedema. Replace constant worry with facts. Notice about what improves, or worsens, your lymphedema.

Helpful worry is fact-based, focuses on likely problems, motivates you to plan to reduce problems or cope with them, and decreasesonce you have a plan.

Reduce unhelpful constant worry by devoting 20 minutes/day to writing down every worry. When worry pops up at other times, postpone it to your ‘worry time’.

Challenge worries with facts:

• Ask: “How likely is this really?” If worries are unrealistic or unlikely, face your fears despite worry.
• Ask: “How would I cope?” If worries are realistic and likely, plan how you’ll avoid, lessen, or cope. Then let worry go.

Accept uncertainty. Certainty is impossible; but a satisfying life with lymphedema IS possible.

Q - My mother has had lymphedema for over 15 years. She complains about her swelling and yet doesn't want to do anything about it. I can't make her see a therapist and she doesn't seem to want to help herself. How can I support her?

A - It hurts to see loved ones not caring for themselves.

She needs to believe change will make a difference for her, is possible, and the pros outweigh the cons.

Change is actually a multi-step process. Before actually changing, we move through Pre-Contemplation (“What problem?”), Contemplation (“Maybe there’s a problem.”), and Preparation (“I’m getting ready.”). Understand where she is in the process and help her move forward.

Ask: “Would you mind if I told you something I’m concerned about?”

Give specific facts about how her life will improve with LE treatment and worsen without it.

Ask: “What do you think about this? What will happen if you change—and if you don’t? How do you feel about those outcomes?”

Listen. Repeat back her reasons for controlling the swelling.

Use Effective Communication Skills:

• 5 positive statements or nonverbal expressions for every 1 negative.
• Ask for her thoughts and feelings first; listen carefully; confirm what you think you heard. Find something she said you can honestly agree with. Admit any ways you contribute to the situation.
• Express your feelings and opinions, but search for solutions that work for everyone—because if she doesn’t agree, she won’t follow through. Suggest small, doable steps.

Offer hope, encouragement, and love. Don’t take it all on your shoulders. Chapters 2, 15, 18, and 22 in Overcoming the Emotional Challenges of Lymphedema can help. Best of luck to you both.

Q - The hardest thing about my lymphedema is the stares and questions I attract when I am out in public and wear my compression garment. What can I tell people that is polite, informative but takes the focus off of myself? 

A - Decide in advance what you will say. Rehearse until it flows smoothly and comfortably.

• “Thank you for your concern. It’s nothing to worry about.”
• “I have a swelling condition and this helps control it.”
• “I have lymphedema which is a swelling condition that often happens after cancer treatment. This garment helps keep the swelling down. Would you like to know more?”

People respond to your manner, and your manner reflects how you perceive yourself. Let your best self shine forth by focusing on aspects of yourself that create feelings of pride, confidence, and comfort. Be friendly and approachable. Stand erect, but relaxed, head up; smile and nod often; make eye contact; use a confident, friendly voice tone.

You can be a source of knowledge and inspiration to others.

Q - My wife has been recently diagnosed with lymphedema, post cancer treatment. She seemed to have gotten through the cancer diagnosis and treatment fine but now has more difficulty dealing with lymphedema. Is this normal?

A - Absolutely! Lymphedema can be harder to deal with than cancer. But take heart. While it takes about a year to adjust to a chronic condition, things do get better.

Minimize physical symptoms through treatment and good home care (see Living Well with Lymphedema or a similar book for physical self-care advice).

Minimize emotional symptoms by accepting that negative emotions are normal, but will diminish as you adapt to the demands of lymphedema. Focus on finding sources of joy and satisfaction.

One day your wife may be able to say, as others have, “I am better, stronger, and more resilient than I ever was before.” (from Voices of Lymphedema).

“Ask the Expert” column appeared in Lymphedema Matters, newsletter of the Lymphovenous Association of Ontario, September 2009.