After a mesothelioma diagnosis, many patients feel bewildered, terrified, and isolated. Having mesothelioma is no easy task, and it can certainly take a toll on your body and your mind. Most mesothelioma patients have family, friends, and loved ones to take care of them and offer them support, but sometimes that’s not enough.
That’s where mesothelioma support groups come in. Support groups are a great way to commiserate, hear stories, and feel the warmth from people who understand your situation keenly. It is certainly easy to become isolated and depressed after a mesothelioma diagnosis, but a support group can at least help heal your mind even while your body is ill.
Types of Mesothelioma Support Groups
When you think of a support group, you probably imagine a large in-person meetup with a moderator or counselor that is filled with people who have similar ailments. Of course, this isn’t far from the truth. Most traditional mesothelioma support groups will connect you with a large group of people suffering from mesothelioma.
At many support groups, you may also find:
- Family members and loved ones
- Mental health counselors
- Medical staff
- Survivors of mesothelioma
All of these individuals can create a welcoming environment based on understanding and similar shared experiences. Of course, not every mesothelioma support group is exactly the same. In fact, some may be catered more toward caregivers or family members. Oftentimes, a mesothelioma diagnosis affects not only the individual but everyone around them.
Caregiver and family member support groups can help those individuals make sense of their evolving role in the patient’s life.
Some support groups are large, which can be intimidating. Some may be more intimate, functioning almost as mesothelioma counseling rather than a standard support group. Other groups may request group members to speak at least once during each session. It’s important to understand exactly what you want or feel comfortable within a support group before joining one outright. It’s always appropriate to sort of “shop around” to different support groups to find one that feels comfortable for you.
Things you may want to consider include:
- How large or small the group is
- The structure of the group (is it led by cancer patients, medical staff, caregivers, etc.?)
- Duration of each session
- Distance you need to travel to get there
- Who is allowed to come? (e.g., are family members or caregivers going to be there?)
- Topics discussed (i.e., is it just about cancer or are there resources and discussion topics for patients, caregivers, and family members?)
- Is the group for mesothelioma emotional support, information about the disease, collecting resources, or some combination of all of that?
Unfortunately, mesothelioma’s rarity makes it hard to find a support group specifically catered to the disease. Some large hospitals or cancer centers may have mesothelioma-specific groups, but you are more likely to find support groups that have a broad focus on cancer. Of course, mesothelioma is a type of cancer, and you will be able to find the same camaraderie with the folks in general cancer support groups.
Many organizations offer cancer support groups, including:
- Health clinics
- Cancer centers
- Local community organizations
- Non-profit organizations
If you are really looking for a more specific mesothelioma-related support group, you can always opt for online routes. The internet is vast, and there is a bustling mesothelioma community out there that can give you what you are looking for.
Online mesothelioma support groups come in a variety of different forms including:
- Facebook groups
- Forums or message boards
- Email listservs
- Chat rooms
- Skype discussions
- Other discussion groups
Many online support groups are run by national medical charities or organizations, meaning that the information you find there is likely to be accurate. Other groups that are unaffiliated with major charities may still provide support and resources, but a support group run by the American Cancer Society, for example, is bound to be good. The major benefit of online support groups is that you can connect with people from everywhere in the world rather than simply your local area.
Another option that many national organizations and cancer centers offer is conference calling. Phone-based support groups are ideal for mesothelioma patients who are looking for assistance but are too far away from institutions that offer more standard support groups. This also allows your voice to be heard, which is often difficult in online groups.
Why Try Support Groups?
For some people, a diagnosis of mesothelioma leads down a dark road. It is easy to isolate yourself, feel alone, and generally only seek the comfort of people you know (if anyone at all). While friends and family members can provide some support, they cannot walk in your shoes or completely understand the emotions of fear, sadness, and anger that you are feeling.
It is not uncommon for patients with mesothelioma and other cancers to develop a variety of mental health issues. Depression, anxiety, and other mood disorders can run rampant especially if you try to go it alone. In conjunction with mesothelioma counseling, support groups can offer the mental and emotional support you need to keep yourself functioning in the face of such a harsh diagnosis.
In fact, studies have shown that regularly participating in support groups can reduce:
- Emotional suffering
- Levels of stress
- Sadness and depression
This alone is enough for many mesothelioma patients to seek out support groups. Of course, groups can be intimidating and uncomfortable at times. Going to a support group can even trigger negative emotions at first. But, over time, it’s clear that surrounding yourself with a collection of caring, empathetic, and supportive people is only a good thing.
People in support groups can provide:
- Stories of their own trials and tribulations
- A feeling of community and camaraderie
- Details about how specific treatments affected them
- Tips on how to manage life with mesothelioma
- Connections for family members and caregivers of patients with mesothelioma
Again, most groups are run by social workers or mental health professionals who are trained to deal with the complex emotions involved in a cancer diagnosis. So, you know that you will be getting the best care from someone qualified to offer it.
Additionally, mesothelioma support groups are often full of resources that can help make your experience that much easier.
Some resources you may be able to find include:
- Information on clinical trials
- News about experimental treatments and their efficacy
- Resources on financial assistance programs
- Information about qualified mesothelioma lawyers
You can typically find all of this material from the institution running the group, or you may even be able to hear about it from fellow patients. In any event, going to a support group can lead you to a breakthrough in your prognosis or financial situation. Many clinical trials offer experimental treatments that have literally saved people’s lives. It’s also always good to find resources about financial assistance for mesothelioma, especially if you are struggling to pay your medical bills.
Clearly, emotional support for mesothelioma is important, but it’s not the only reason why mesothelioma patients attend support group sessions.
How Do You Find Support Groups?
The best way to find a support group in your area is to ask your doctor, oncologist, or the staff at the local cancer center or hospital. Many doctors and oncologists will let you know about mesothelioma or cancer support groups at the time of your diagnosis. If you are receiving counseling, then you can ask your counselor about support groups designated for mesothelioma patients or cancer patients in general.
Most medical and psychiatric professionals know that a proper support system is key to the overall health of the patient. There is also an abundance of other resources you can use to find a support group.
American Cancer Society
The American Cancer Society is one of the foremost health organizations in the United States. It offers a variety of support programs for those with numerous types of cancer, including mesothelioma. Some of these programs are based locally in your area, while others may exclusively be on the internet.
The Mesothelioma Center
The Mesothelioma Center runs the largest mesothelioma-related Facebook group with over 60,000 members. In addition to support groups and information on financial programs, the Mesothelioma Center also offers the most up-to-date news and information on mesothelioma diagnostics, treatment, and laws relating to asbestos exposure (the cause of mesothelioma). The Mesothelioma Center is an important resource for anyone diagnosed with mesothelioma as well as their loved ones and caregivers.
The Meso Foundation (formerly the Mesothelioma Applied Research Foundation or MARF) is one of the largest mesothelioma-related health organizations in the world. It funds research, raises awareness, advocates on behalf of patients, fights for asbestos bans, and provides a vast amount of information about the disease. On top of all that, it is also a good resource for finding mesothelioma support groups.
The foundation itself runs 4 different Facebook groups, all with a different focus. Each group centers on a selection of people who are touched by mesothelioma in different ways, including:
- Bereaved family members
- Advocates for a cure
It also offers a variety of support groups by telephone for patients, caregivers, and family members. Most telephonic support groups occur on a monthly basis. No matter how you look at it, you’re going to find a supportive community with the Meso Foundation.
I Had Cancer
I Had Cancer is a network of survivors of all types of cancer that works as one large support group. As the name of the organization suggests, everyone on the website has had cancer at one point in their lives. The site allows you to share your story and find the stories of cancer survivors all over the world. It is a source of inspiration to be able to connect with all those who have experienced or are currently experiencing cancers like mesothelioma.
Cancer Support Community
The Cancer Support Community is one of the largest online cancer support networks in the world. It connects people from all walks of life, many of whom are suffering mesothelioma. It provides resources for support groups while also hosting groups themselves. They also provide a toll-free cancer helpline that you can call any time of the day to get information and support.
The community also hosts message boards and web chats in a variety of categories.
For instance, you can join discussion groups based on:
- Cancer type
- Long-term survival
- Cancer in people under 40
- Side effects
There is something for everyone with the Cancer Support Community.
Cancer Hope Network
The Cancer Hope Network links up current patients, caregivers, and family members with a volunteer who has lived through a cancer diagnosis in the past. The cancer survivor often serves as a sort of mentor and confidante for the individual currently living with the disease. This is a great way to receive more one-on-one support from a knowledgeable individual if large groups are not appealing to you.
CancerCare offers a variety of informational materials and can also help you find a support group in your area. Their website features a long list of potential support groups that exist in the real world, online, or by telephone. Even if they do not have a mesothelioma support group in your area, they still provide general cancer support groups that might be of some assistance.
Although it covers a wide breadth of illnesses, MD Junction can still provide a great deal of support for mesothelioma patients and their families. The website offers forums for virtually every disease you can think of, including mesothelioma. There, you may find exactly what you need to cope with this disease.
There are plenty of forums online you can choose from. The benefit of finding an online support group is that you can find numerous options in a single day if you look hard enough. You may also be able to find or create your own support group on sites like Meetup.com. Clearly, if you are looking for emotional support for mesothelioma, there are options out there.