Mesothelioma patients, their families, and caregivers can benefit from a mesothelioma support group of friends and community as they struggle to cope with the physical, emotional, and financial effects of this fatal disease.
Mesothelioma is a rare, aggressive, and deadly form of cancer. In 80% of cases, it is caused by exposure to asbestos. Most cases are incurable, as symptoms may not appear until almost 40 years after initial asbestos exposure. Once diagnosed, the disease can spread rapidly throughout the body.
Until the 1970s, people knew little about the medical effects of asbestos exposure. As more people were diagnosed with pleural mesothelioma, large organizations began providing funding for research. The resulting information raised awareness about the link between asbestos and mesothelioma cancer.
Types of Support available for mesothelioma patients and families
Coping with a mesothelioma diagnosis is not easy. Fortunately, you can do things to make your life as normal as possible and get mesothelioma support services for most of your difficulties.
There are agencies and services available to help you deal with finances, emotional support, and medical care. In addition, many support groups exist that you can join, which provide an additional sense of community.
Support groups address the needs of caregivers.
A mesothelioma caregiver is often a family member. Caregivers juggle many demands while providing physical and emotional support to the patient throughout their mesothelioma treatment.
- Round-the-clock patient primary care
- Transportation to and from appointments
- Daily meals, laundry, chores, errands
- Overseeing the household and medical expenses
- Support groups can provide caregivers an outlet for stress.
Many caregivers put aside personal needs to focus on patient needs. However, a cancer support group can be a safe place to share feelings. In addition, people in the support group can be an excellent source of information for helpful external services and agencies.
Support for children of people diagnosed with mesothelioma
It’s common to want to protect your children from difficult news, but they need to know what is going on. Being open with children allows them to ask questions and get answers. Talking about their feelings will help them process and accept that a loved one must receive treatment for malignant mesothelioma. In addition, children may benefit from participating in a support group with peers their age.
Mesothelioma patients and families can access different types of support and cancer treatment options.
If a mesothelioma patient requires mental and emotional health assistance, ask medical providers to refer a therapist.
The loss of the primary breadwinner’s income may now make it hard for the family to meet their financial obligations. Bills for medical stays and services, treatment, and at-home care can quickly become overwhelming. Many families end up struggling to put food on the table and keep a roof over their heads. Sources of financial assistance that can help bridge the gap are:
- National, regional, or local charity or non-profit organizations
- The American Cancer Society offers cancer treatment lodging, transportation, and informational resources.
- United Way’s 211 Program connects individuals and families in need to sources of assistance for housing, utilities, food, and medical expenses.
- Cancer Care offers a national helping hand database to find assistance for practical household and medical needs.
Government assistance programs
Benefits.gov can help identify government benefits that you and your family may be eligible to receive.
Medicare offers financial assistance for those in need.
Veterans Affairs helps veterans who contracted mesothelioma during their service. You are entitled to compensation, benefits, and help from your branch of the armed services of the U.S. Government.
National Hospice Care offers you and your family help, medical support, and resources to set up care and end-of-life arrangements.
Asbestos trust funds may provide compensation for medical injury claims by eligible patients and their families.
A mesothelioma patient or family member can file a legal claim for compensation against companies that exposed workers to the deadly substance.
Benefits of joining a mesothelioma support group
Participation in a support group can provide more information about the disease you have. Support group members are also living with mesothelioma. Studies reveal that cancer patients who participate in a support group have an improved quality of life and less anxiety and depression.
Individuals benefit from a support group because:
- The group provides a connection to someone who understands your situation.
- The group provides a safe place to share experiences and concerns.
- Other support group members can advise on where to get help for practical needs and financial aid.
- Members provide a source of acceptance, inspiration, and hope.
- Joining a support group can improve your ability to cope with a mesothelioma diagnosis.
- Interacting with members of a support group helps you:
- Gain insights into what is happening as you undergo treatment
- Cope with side effects of the treatment
- Bond with other patients living through mesothelioma
- Gain a sense of peace from talking with cancer survivors
Why is it important to consider joining a support group when you or someone you know has been diagnosed with mesothelioma?
You and your family will need somewhere you can go for a shoulder you can lean on. A cancer support group will help you process your emotions as you undergo cancer treatment. Members of the support group have done the same and can empathize.
It can be difficult for friends and extended family members to understand what you are going through as you battle cancer. Support group members are cancer patients, family members, and caregivers in the same life-and-death struggle as you. Fellow members can relate to your feelings.
A support group helps caregivers and family members cope with the stress of caring for a loved one with mesothelioma. Life changes considerably for the whole family, so it is important to talk with other families struggling with similar changes.
Organizations that offer support groups for mesothelioma.
The most prominent organizations that offer support groups for mesothelioma
• Cancer Survivor’s Network provides a personal space for a patient with lung cancer, mesothelioma, or other types of cancer to share photos, audio messages, or blogs. In addition, CSN has an online discussion board to connect with other cancer patients and those with a mesothelioma diagnosis to trade advice and support.
• Mesothelioma Applied Research Foundation offers several support groups for mesothelioma patients, caregivers, and family members. You can join a telephonic support group or a Facebook support group. Some support groups focus on specific types of mesothelioma or cancer.
• Pacific Heart, Lung & Blood Institute provides a telephone support group for the caregivers of patients with mesothelioma from asbestos exposure.
• Cancer Support Community offers a support group for cancer patients and families via phone and online web chat.
• Caring Bridge provides a free online website for cancer patients to share updates on health, feelings, and needs.
• Cancer Hope Network provides one-on-one cancer support matching a patient with cancer or a mesothelioma diagnosis with trained volunteers.
Religious and spiritual organizations that offer support for mesothelioma
Many mesothelioma patients seek religious or spiritual help to cope with their health and life challenges. Most hospitals provide a list of Christian-based, Catholic, Interfaith, Jewish, or Muslim worship and prayer leaders.
Local churches, community centers, or the YMCA are an excellent place to check for therapeutic or spiritual activities and a support group for individuals dealing with cancer such as:
- Painting or art,
- Meditation,
- Music or Animal therapy,
- Stretching or low-impact exercise, or
- Yoga
How to find out more about organizations that support mesothelioma patients and their families
- Access the website or local chapter of national cancer, lung cancer, and mesothelioma research and care organizations.
- Ask other cancer patients about a support group and services in your area.
- Call your county government and ask for a listing of local non-profit organizations.
- Get recommendations from your medical team, lawyer, or other service providers.
How to Find a Mesothelioma Support Group Online
As people progress through the stages of mesothelioma, they often become less physically active. Mesothelioma patients who can’t attend a support group can chat with other mesothelioma or cancer patients in a virtual support group. Some groups allow you to create your own webpage to update friends and family on your health progress.
A mesothelioma patient, family members, and caregivers often feel confused and isolated. A support group brings together a community of people dealing with cancer to share experiences. In addition, the group can answer questions and provide information about asbestos, mesothelioma, and cancer treatments.
The Easiest Way to Find an Active Online Mesothelioma Support Group
Ask your mesothelioma medical team for recommendations.
Use a search engine to search for a nationwide, regional, or local online support group. People with mesothelioma can also benefit from cancer support groups.
Visit websites that provide information about asbestos exposure, mesothelioma, or mesothelioma cancer.
Social media sites such as Facebook and Twitter are home to many support groups for cancer patients and mesothelioma patients. Some sites are blogs that journal or diary a mesothelioma or cancer patient’s daily struggles and victories. Other sites are message boards where members can interact with others for encouragement, information, and support.
How Do You Join a Mesothelioma Support Groups Online?
Before you join a support group online, see how many members belong to the group. Some mesothelioma patients or family members may be uncomfortable talking or sharing feelings openly in a large group. However, others may feel they gain more perspective and information from a group with many members.
Look for a note from an online administrator to see what is acceptable in group conversations. Any support group for those diagnosed with a disease such as mesothelioma or cancer takes confidentiality and privacy very seriously. Therefore, the group will request that you register with them by email, phone, or online to join the mesothelioma support group.
No one can fight mesothelioma alone. No matter what your situation or what stage of the disease you are in, there is a support group for you, your family, and your caregivers.
A support group is available to meet the needs of any patients, caregivers, and family members dealing with mesothelioma. Participating in a support group is as easy as typing or speaking. Explore your options and join a support group.
