You may think that there isn’t much anyone can do to help mesothelioma patients. You may need to think again. There actually are many things you can do to help mesothelioma patients. They may seem like little things but they matter.
Because people often feel overwhelmed by the idea of terminal illness and do not know what to say, they may stay away from someone suffering from mesothelioma. This isolation can just compound the suffering.
People basically want to be kind and supportive to mesothelioma patients. They just don’t know how.
Lung cancer patient Lori Hope – she began using her middle name as her surname after her diagnosis – interviewed scores of cancer patients and caregivers “to write a book that would speak on behalf of cancer patients too considerate, fragile, or temporarily weakened to share what they really need.”
Her book, Help Me Live: 20 Things People With Cancer Want You to Know, was published in 2005. In September 2011, a revised and expanded edition of Help Me Live, based on a survey of more than 600 survivors and comments from hundreds more, was released. Sadly, she died at her home in Oakland, California in 2012. She was 58 years old.
Here adapted for mesothelioma patients are some of Lori Hope’s suggestions. (For more mesothelioma-specific advice, you can read In His Grace, Grappling with Mesothelioma, The Randy Brady Story by Debbie Clemmons.)
20 Things People with Mesothelioma Want You to Know
- It’s okay to say or do the ‘wrong’ thing.
- I need to know you’re here for me, but if you can’t be, you can still show you care.
- I like to hear success stories, not horror stories.
- I am terrified and need to know you’ll forgive me if I snap at you or bite your head off.
- I need you to listen to me and let me cry.
- Asking my permission can spare me pain.
- I need to laugh—or just forget about my mesothelioma for a while!
- Telling me to think positively can make me feel worse.
- I want you to respect my judgment and treatment decisions.
- I want you to give me an opening to talk about mesothelioma and then take my lead.
- I want compassion, not pity.
- Advice may not be what I need, and it can hurt more than help. Try comforting me instead.
- I am still me; treat me kindly, not differently.
- If you really want to help me, be specific about your offer, or just help without asking.
- I love being held in your thoughts or prayers.
- Hearing clichés or what’s good about cancer can minimize my feelings.
- I know I developed mesothelioma from asbestos exposure and hearing your theory may add grave insult to injury.
- Don’t take it personally if I don’t return your call or want to see you.
- I need you to offer support to my caregiver because that helps me too.
- I am more grateful than I can say for your care, compassion, and support.