Recently I was sitting in the waiting room of a clinic while a client was meeting with her doctor. There were two couples in the waiting room with me and they started up a conversation with each other. After the usual comments about the weather the conversation shifted into discussion of their conditions and how they were being treated. One patient shared about her experience with a particular treatment option and suggested the other patient ask her doctor about it. They exchanged a lot of information and then suddenly both pairs were whisked off to their respective appointments. While I have no idea if the information they exchanged would be helpful, I was struck by the importance of this meeting. When one is dealing with a major illness it is important to connect with others in your similar situation. The problem is we often don't have time to connect with our close friends and family members, let alone meet new people. Yet one of the most important resources you can find for valuable insights is with people who have the same medical condition.
Once, when I was attending a cancer support group a patient mentioned she was struggling with side effects from a particular kind of chemo. My husband had been on that same chemo and I shared with her a few things that helped him alleviate that symptom. This was not medical advice, it was just a tip for something to ask at her next doctor's visit. It might have already been suggested to this patient before, but hearing about its effectiveness from a fellow patient's caretaker may have encouraged her to look into it more. So often patients are inundated with information and it can be difficult to absorb it all. That's why connecting with others with experience with the same condition can be so useful; it isn't necessarily a problem with clinicians not giving the information but patients needing clarity in sorting through it all. And those who have already sorted through it are in the best position to offer suggestions from the other side of it.
Friends, neighbors, and family members sharing success stories and advice is the way that most of the wisdom of parenting and health and safety was spread for generations. Unfortunately in our modern world we sometimes have difficulty connecting with people. My first suggestion is to reach out to people in your own social network of friends, family, and colleagues and ask if they know anyone with your same condition. Often people are happy to connect you with others they know but they tend to wait until asked. Most of the time your own personal network will bring you to someone who is helpful; even if you think you don't know anybody odds are you do. The people in your life are waiting for you to ask and want to help you, so don't be shy about reaching out to others and asking them for introductions.
Another great resource for finding others is through your physician's office and the hospital where your physician is associated. Most hospitals have support groups, fitness classes, art workshops, cooking classes, and other events specifically designed for people undergoing treatment for particular illnesses. All hospitals have social workers and discharge planners on staff whose role is to assist patients in finding the best resources for support. These resources are free and they are usually very eager to help you find a group or resource that will help you.
You can also look online for virtual communities where patients and caregivers share information. Contacting local chapters of advocacy organizations can also be very useful. Even if they don't have formal support groups or meetings they may be able to connect you with others in your area and they often have staff members available to connect you with local resources. It is also often possible to find great connections on Meetup. For cancer patients there are two particular resources that I can recommend: Imerman Angels and SmartPatients. Imerman Angels is a nonprofit that matches cancer patients or caretakers of cancer patients who are the same age, gender and cancer type for one-on-one conversations. SmartPatients is a social media site where cancer patients can share information about their treatments, clinical trials and the latest developments in treatment. You may be able to find similar networks for other illnesses as well.
At first it may seem a bit strange to attend a meeting or talk with someone who is dealing with your same illness. It felt odd to me the first time I called one of my husband's distant relatives, who is an oncology nurse and had been the caretaker of a cancer patient. She was a stranger to me and it was a bit unnerving to reach out to her. However, 2 minutes into the conversation I felt at ease with her because she understood my feelings better than anyone else. She also became a wonderful support throughout my husband's illness. She never really gave us any clinical advice but she did have insights and suggestions for simple things that were immeasurably helpful. So I cannot encourage you enough to get in contact with others who have "walked in the same shoes" of your illness. You will be glad when you do.