Why Do I Need Support for Mesothelioma?
One of the primary benefits of support groups is having people to talk to who can relate to your circumstance. Even the most caring of friends and family may not have the experience or perspective to fully understand the complex emotions and physical challenges that come alongside a mesothelioma diagnosis.
There are numerous benefits of cancer support, including:
- Improved survival rates
- Better quality of life
- New hope and inspiration
- Strengthened sense of community
- New friendships and social connections
- Minimized isolation
- Reduced stress, depression and anxiety
In fact, mesothelioma support is such an important component of survival and quality of life that cancer researchers continue to study the impacts of these support systems in clinical trials.
Many people feel that support groups “aren’t for them,” but almost everyone with mesothelioma needs a support system that extends beyond their family and friends. There are many forms of support that you can access, including online groups and phone-in sessions, allowing you to find the style of support that works best for you.
Mesothelioma Support Groups
Support groups for mesothelioma take many shapes and forms. First, talk to your doctor or patient coordinator to find out what support groups and systems are available close to home or within the hospital. The American Cancer Society also arranges and facilitates support groups by location, and is a good first step towards finding cancer support resources.
However, because mesothelioma is rare, you may not be able to find a support group in your local area that connects you with mesothelioma patients specifically. Mesothelioma is quite different from other cancers, and many patients want to connect with people who have a strong understanding of the disease. Fortunately, there are options for mesothelioma patients to connect online and through the phone.
Phone Support Groups
Phone support groups recognize the need for mesothelioma support, regardless of location. These groups typically meet on a regular basis, using a conference line to connect.
The Meso Foundation (formerly the Mesothelioma Applied Research Foundation) hosts many phone support groups, geared towards patients and their caregivers. These phone calls are divided into three categories, Patient, Caregiver, and Spousal Loss, and each category typically has one call per month. These calls last an hour, and participants are vetted in advance by the Meso Foundation to ensure the privacy of all participants. You can register for these phone calls by phoning Maja Belamaric at (703) 879-3822.
The Cancer Support Community is another way of getting prognosis support by phone. counselors are available Monday through Friday from 9 am to 9 pm ET, offering free counseling and phone support. In addition to providing social and emotional support, the Cancer Support Community is also a wealth of knowledge and can share resources on a wide range of subjects including treatment planning, financial guidance and clinical trial information. If you’d like to talk to a licensed cancer counselor, call 1-888-793-9355.
Online & Facebook Support Groups
Facebook and other online groups are a fantastic way for you to connect with other mesothelioma patients whenever you need to, wherever you are. Online groups allow for ongoing and more immediate conversations than pre-scheduled phones and meetings, and many mesothelioma patients have found Facebook and other similar support groups to be highly beneficial.
A few of the mesothelioma support groups on Facebook include:
The Meso Foundation (formerly Mesothelioma Applied Research Foundation) also administers several Facebook groups. Most of these groups are private, accepting new members by invitation only, to protect the participants. There is a Facebook group for Mesothelioma Warriors Survivors, one for Mesothelioma Caregiver Conversations and another for Mesothelioma Loss Support. If you’d like to join one of these Facebook groups, contact Maja Belamaric at (703) 879-3822 or through the Meso Foundation website.
The Cancer Support Community hosts a live web chat from 9 am to 9 pm ET, Monday through Friday, allowing you and your family to talk online with a licensed counselor. He or she can provide you with short-term emotional support, or help you connect with resources to overcome any challenges you may be experiencing.
Support groups aren’t for everyone, while even those who enjoy groups often still appreciate the personalized care in addition to the group support. Private support can be a highly beneficial means of providing comfort in these circumstances. If you have mesothelioma, you may find that working one-on-one with a psychologist, counselor or social worker can help you get the benefits proven by strong mesothelioma support.
Comprehensive cancer centers and many other hospitals will typically provide some form of private support to those who ask for it. Talk to your doctor to find out what options are available at the hospital, and give them a try.
If you can’t find the private support you’re looking for within your local community, contact the American Cancer Society or the Cancer Support Community. These two organizations are excellent at connecting mesothelioma patients with the best resources in their region.
Cancer Hope Network
The Cancer Hope Network is an additional option for one-on-one support, matching cancer patients with volunteer cancer survivors. The Hope Network will match you at any stage of your diagnosis and try to find someone who overcame the same experience you’re going through now. To learn more about the network and get matched with your support volunteer, call 1-877-HOPENET or (908) 879 – 6518.
Getting Support For Spouses & Family
Mesothelioma is a challenging disease to fight, and the poor prognosis rates can take a mental toll on family members too. Connecting your partner or family members with a support group of their own can also help you.
People who love you may not want to burden you with their questions, fears, frustrations, or other challenges. But it doesn’t mean they don’t struggle with your prognosis too. Support groups explicitly designated for family members can help your loved ones get the support they need and, in turn, they will be better at providing you with the support you need. Everyone benefits.
A few of the organizations that offer support groups to family members include:
- Meso Foundation – Phone, Facebook
- Cancer Hope Network – Support Volunteer
- Cancer Support Community – Phone, Live Chat
- American Cancer Society – Phone, Resource Connection
If your loved ones ask how to support you in your fight against mesothelioma, suggest a support group to help guide them through this challenging journey.
Other Programs for Mesothelioma Support
Navigating mesothelioma can be a daunting task. While many support group’s primary functions is to help improve social and emotional health, other forms of support are often necessary too. A wide range of programs exists to help mesothelioma patients get the best care possible.
Some example support programs include:
- Free or subsidized medical equipment programs
- Transportation to and from treatment
- Accommodation or temporary housing arrangements
- Insurance explanations and budgeting guidance
- Palliative or end-of-life care options
- Legal compensation for asbestos exposure
If you’d like to connect with resources to help with any of the above, or other similar needs, contact the American Cancer Society’s helpline at 1-800-277-2345 and they will help you get started.
For additional support, please get in touch with our Mesothelioma Justice Support Team. We work exclusively with victims of asbestos-related diseases and their family members and can connect you with the resources you need to fight this battle against mesothelioma.