Getting a mesothelioma diagnosis is often completely overwhelming for patients and their loved ones. After the initial shock, there is often a whirlwind of emotions, from frustration and anger to fear and anxiety, and it can be difficult to process those emotions while also trying to process so much new information about the road ahead.
If your loved one is diagnosed with mesothelioma, you may not know what to do next, or how to best show your support and strength for them. However, you should know that loved ones of mesothelioma patients are uniquely capable of providing empathy and understanding as well as practical assistance in the wake of a mesothelioma diagnosis. While it is often difficult to know where to start, we can offer some crucial tips on how to best show up for your loved one in their time of need.
While every mesothelioma journey is different, and each person will need their loved one to show up in different ways, loved ones might consider the following:
- Gather information. After a mesothelioma diagnosis, patients are often flooded with information and asked to make very important decisions. In many cases, patients are still in shock and attempting to handle the emotional weight of what they have been told and may find it difficult to process this information fully. Loved ones can offer essential support in paying careful attention to the diagnostic care team. As your loved one’s eyes and ears, you may want to record whatever is said by writing it down, asking for a print-out, or simply recording the appointment with your phone. Knowledge is power and can help your loved one tremendously.
- Help with research and exploring treatment options. Simply put, mesothelioma comes with a lot of homework. Patients often have to learn about the condition, get second opinions, and figure out the best specialists, treatment centers, and treatment methodologies for them. While your mesothelioma care team can help you with this process, it is often wise to have as much research and information under your belt as possible. Many mesothelioma patients find this part of the process too overwhelming or anxiety-inducing, so loved ones can fill the crucial role of researcher on their behalf.
- Come to medical appointments and serve as a medical advocate. In addition to a lot of homework, a mesothelioma diagnosis comes with a lot of medical appointments. As your loved one embarks on their mesothelioma treatment journey, one of the best ways to support them is by being physically present with them for these appointments. Many mesothelioma patients feel lonely, vulnerable, or just plain bored going to their many doctors’ appointments on their own. Being present for these appointments will also help you advocate for your loved one and stay informed about their care.
- Listen, encourage, communicate, and support emotional needs. One of the most essential and often overlooked things that loved ones can do for mesothelioma patients comes down to empathetic communication. Make space to actively listen to your loved one, and to really hear what they say to you. Make sure to check in with them regularly and to be truly available for them. Ask them about their fears, concerns, and any other emotions they might be feeling, and let them know that you are here for them. Create an environment where they feel safe expressing themselves and letting you know about what they are experiencing physically and emotionally, as well as what they might need.
- Create a wider emotional support network: Having a rare cancer like mesothelioma can be very isolating for patients, and while loved ones can provide a great deal of essential support, most mesothelioma patients need a wider, more comprehensive network to get the support they need. Loved ones can help create or reinforce that network, both by facilitating regular visits with friends and family members, and by connecting with communities of people who know what the patient is going through. Mesothelioma support groups—whether online, in-person, or both—can provide essential support, as well as insights and a sense of community, camaraderie, and shared struggle that mesothelioma patients might otherwise lack.
- Maintain privacy and dignity: Many mesothelioma patients are taken out of their comfort zones during treatment, feeling exposed and vulnerable as their private information is discussed frequently by many people they may or may not know. Loved ones can be an essential bolster against the loss of privacy that mesothelioma patients experience. Whenever possible, do not discuss a mesothelioma patient’s medical condition, symptoms, treatment, or prognosis with others without their permission. This will help retain their sense of boundaries, privacy, and dignity, which drastically improves quality of life.
- Help with daily tasks and logistical/practical treatment matters. As mentioned above, mesothelioma comes with a lot of homework, and a lot of logistical puzzles to solve. You can help your loved one tremendously by handling those logistical and practical matters, which can range from figuring out the cost of treatment financially, to pursuing legal recourse for asbestos exposure, to figuring out how to get the patient to and from appointments, or any number of other practical matters that need to be handled for mesothelioma patients. In addition, remember that the physical needs and abilities of mesothelioma patients have often changed significantly since diagnosis, and they may not know how much help they need—and in some cases, may feel embarrassed to ask. Be proactive in helping your loved one with daily tasks like cooking and cleaning in addition to larger logistical problem-solving.
- Create a healthy, supportive, and encouraging environment for treatment. Another essential element of success for mesothelioma patients is having a healthy, supportive, and encouraging environment during treatment. Whether this environment is at home or at an inpatient facility, mesothelioma patients need an environment conducive to healing, and loved ones can be essential in creating that environment. Make sure your loved one has a clean, healthy living space that is accessible to them, and that they eat a nutritious diet, comply with their medication regimen, and exercise as much as is recommended. In addition to a healthy physical environment, loved ones are essential in maintaining a positive, hopeful, and encouraging emotional environment for mesothelioma patients, which is one of the most central forms of support they can provide.
- Listen to what your loved one wants and honor their wishes: Mesothelioma comes with a number of very serious decisions, and those decisions belong first and foremost to the mesothelioma patient themselves. At the end of the day, the best way for a loved one to support a mesothelioma patient is to respect that these decisions are complex and personal, and to honor whatever the patient chooses. In some cases, loved ones do not agree with the choices made by mesothelioma patients, especially those who choose not to pursue aggressive treatment. However, as a loved one, you can best show your care, dedication, and support by allowing mesothelioma patients to retain their agency and make their own choices.
Are you or a loved one looking for more information about mesothelioma? Call (855) 385-9532 to learn more.