When you or someone you love is diagnosed with mesothelioma, it can be difficult to move forward. That is why developing a mesothelioma support system is important for everyone involved in the cancer journey.
As a patient, you may feel overwhelmed, scared and anxious. That’s completely normal. In these challenging times, it becomes important for you to surround yourself with those you love. By building a strong mesothelioma support system, you can nurture your emotional well-being, lower your stress levels and limit your fear of the unknown.
“Having a mentor was the most important thing that has happened for me.”
– Diane Saunders, pleural mesothelioma survivor
For some of you, mesothelioma support means emotional help, and that makes sense. Good mental health and a positive well-being are crucial to surviving mesothelioma. Key outlets for emotional support include mental health counseling, mesothelioma support groups and mentorship.
If you double as a caregiver and family member, remember a solid support system is also essential for you and your well-being. Taking on this new role is difficult, and it is not something you should do alone. By asking for additional help, you can build a reliable mesothelioma support network to help you through this challenging time.
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Cancer doesn’t only affect the body. As a result, there are a number of emotions you may experience throughout a mesothelioma battle: Stress, anger, confusion, denial and depression.
As a patient or caregiver, there are numerous mesothelioma support resources that can bring comfort, peace of mind and understanding. You are not alone in this fight.
Sharing your thoughts or listening to others going through similar experiences in a mesothelioma support group may provide you and your caregiver a much needed form of emotional support.
Studies show people with terminal cancers who participate in support groups have higher survival rates and increased quality of life.
Mesothelioma-Focused Support: Mesothelioma may be a rare disease, but you’re not alone in this journey. Support groups provide a safe place to share your experiences.
Comprehensive Support: Licensed counselors and social workers with expertise and training lead groups to help patients like you cope with the disease.
Greater Quality of Life: Studies show participating in support groups can reduce your anxiety, stress levels, emotional distress, fatigue, pain and mood.
Additional Resources: Many mesothelioma support groups share new resources that could help you outside of the support group and in addition to your medical team.
Caregiver Support: Support groups are not just for you. Your caregiver is often taking on a new role and may need encouragement while coping with changes in both your lives.
Many mesothelioma survivors have credited a strong support system, including friends, family and other survivors, as reasons for their survivorship and high quality of life.
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“Without a shadow of a doubt, the Mesothelioma Center Facebook group is one of the best groups I have joined… The support the group provides is amazing.”
– Nicholas Bornman
Unfortunately, given the rarity of mesothelioma, it can be difficult to find mesothelioma-specific support, but many groups are open to cancer patients in general. Local hospitals, therapists or cancer advocacy groups, such as the American Cancer Society and the American Psychological Oncological Society, host support groups for all cancer patients.
Since mesothelioma is such a rare cancer, it can be more valuable for survivors to find others living with the same diagnosis. It is also beneficial for mesothelioma caregivers to talk with others caring for patients. While more challenging, there are mesothelioma-focused support outlets such as the following available online and over the phone.
This is a monthly online support group focused solely on people affected by mesothelioma. It is led by a licensed mental health counselor Dana Nolan. The goal of this group is to build a community of mesothelioma survivors, caregivers and family members in a safe, judgment-free environment. Patients can also join by phone.
This platform helps a survivor reach out to another survivor with the same mesothelioma diagnosis. This makes it possible for long-term survivors to mentor those recently diagnosed with the same disease.
As one of the largest professionally led nonprofit cancer support networks, Cancer Support Community offers an online “Living Room” for patients to participate in online discussion boards facilitated by a licensed counselor.
As a series of discussion forums, Inspire offers communities based on specific disease diagnoses and treatment options. The site has partnered with larger organizations, such as the American Lung Association, to provide related resources in a given community discussion.
Social media has quickly become a hub for support resources. As the largest Facebook page dedicated to mesothelioma patients, the community is 60,000 people strong and continues to share the latest information on medical advancements, including clinical trials and treatment options.
Depression and anxiety may accompany any life-threatening illness, and this is especially true if you’re diagnosed with mesothelioma. Depression is not just feeling down or blue. It is a clinical condition that may require treatment from a professional.
Clinical depression comes with a specific set of symptoms. Among them are mood swings, fatigue, feelings of sadness or emptiness that last for more than just a few days, feelings of helplessness or worthlessness and changes in eating and sleeping habits. Are you feeling any of these?
It’s important to recognize symptoms of anxiety in your life and seek help. These organizations can provide some assistance to you or your loved one:
Experiencing grief is a normal response to losing someone you love. Going to support groups or counseling sessions can make a huge difference in your life. It takes time to cope with the loss of a loved one.
If you are like most people who are struggling with grief, you just want to get your life back. When participating in grief counseling sessions, hospice support staff or a licensed counselor can help you set goals for recovery and guide you as you work toward achieving them.
The people who care for you as a mesothelioma patient face unique challenges that make it important for them to find their own type of support.
The experience itself can test your faith and character. While it is an honor to care for the ones we love when they need us, reaching out for help when you need it doesn’t make your effort less valiant.
Some of the responsibilities caregivers may need help with include shopping for groceries, cooking, cleaning, paying bills and driving to doctor appointments.
Slideshow: Resources for Mesothelioma Caregivers
While traditional treatment is essential in your battle against mesothelioma, a well-rounded treatment approach can make a huge difference when it comes to your prognosis. This means you may want to reach out to a variety of specialists to complete your support team.
Even if you’ve already seen an oncologist, it’s in your best interest to see a mesothelioma specialist for a second opinion. While this may sound like a lot of running around to hear the same verdict, it truly can impact your medical decisions as specialists are more familiar with the disease. You do not have to do this alone.
Dana Nolan, MS, LMHC, is a licensed mental health counselor who leads The Mesothelioma Center's monthly support group. She specializes in working with individuals affected by cancer. Dana practices in Altamonte Springs, Fla.
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