Benefits of Sharing Your Mesothelioma Story
January 26, 2018
For thousands of years, humans have shared stories through speaking, pictures and writing.
Listening to and sharing stories is how we educate and entertain our children, bond with friends, grieve our losses and celebrate our joy. Sharing stories is how we make sense of the world around us and process new information to create our own personal narrative.
Many people find comfort and a sense of connectedness when they share the story of their wedding day, the birth of their child or a big career move.
Sharing personal accounts can also help us cope with traumatic life events such as the loss of a loved one or a cancer diagnosis. Events that have a big impact on us need to be processed and integrated into our new reality.
Research in the field of linguistics and psychology shows sharing stressful life events such as a mesothelioma diagnosis can benefit us physically and emotionally.
When Talking About Cancer Was Socially Unacceptable
Until about 40 to 50 years ago, cancer survivors rarely felt they had permission or an opportunity to share their cancer experiences.
It was considered taboo to discuss a diagnosis with family members or close friends.
At the time, even mentioning the word cancer was considered socially unacceptable. Many simply referred to it as the “Big C.”
The rapid increase of cancer support groups in the 1980s finally allowed cancer patients and caregivers an opportunity to talk about their cancer journey and give and receive support from others going through similar experiences.
Newly diagnosed cancer patients are usually eager to talk to survivors who have already received treatment and experienced advanced symptoms and side effects.
Reasons to Share Mesothelioma Stories
We can share cancer stories orally or in written form. There are many benefits — and a few risks — to sharing experiences and inner thoughts and feelings with others.
Reasons a person may want to share their story include:
- Providing medical history to health care providers. Many mesothelioma patients find they will recount how they were diagnosed and treated many times to their health care team. A primary care physician or family doctor may not be familiar with mesothelioma symptoms or treatment options, so a patient may have to educate them on the specifics of the cancer and what to look for should recurrence or progression occur.
- Venting about negative emotions or experiences. Emotions such as anxiety, fear, stress and sadness can get jumbled in our heads in a way that feels disorganized and overwhelming. Keeping a journal or talking to a supportive listener are good ways to vent about negative thoughts and feelings.
- Celebrating treatment successes. Many mesothelioma patients can’t wait to share good news with others. Telling loved ones about completed chemotherapy treatments or a successful surgery is a great way to spread joy and help everyone focus on positive moments.
- Educating and supporting others. Most newly diagnosed mesothelioma patients and their caregivers are eager to hear stories from survivors to get perspective. Some mesothelioma patients find it rewarding to share their own treatment experience as a way of giving back and providing hope to others.
- Searching for and expressing the meaning of the cancer journey. Major events such as marriage, having children and the loss of a loved one are woven into our life story. These events shape our values, worldview and hopes and dreams. Sharing a cancer experience can help a patient feel more deeply connected with others or with their spirituality. Some mesothelioma survivors form a new, positive meaning to life after a cancer diagnosis.
- Informing co-workers or loved ones about health issues and asking for help. Coping with mesothelioma treatment isn’t easy. Patients may want or need help from family members, friends or co-workers. The more this inner circle knows about what a patient is going through, the better equipped they will be to offer the right kind of help or support.
Risks of Sharing Cancer Stories
There are many benefits to sharing a cancer experience, but it is important to know potential risks.
As a mesothelioma patient shares challenges, fears and successes, they could face very personal questions, unsolicited treatment or diet advice or even judgmental comments.
While most people intend to be supportive, some mesothelioma patients have shared their personal cancer stories and not received the type of support they wanted.
Cancer chat rooms and support groups are a safe place to share cancer stories, as they are usually moderated by trained volunteers or health care professionals.