At some point in your life or perhaps even now, you’re bound to be afflicted with an illness, whether it be terminal or something transient. You can find ways to avoid it or to postpone it, but whatever you do, it’s bound to happen eventually. And if it does, that doesn’t mean the world has to end. It doesn’t make you less of a person.
One common psychological reaction of people is to find all the information they can regarding their illness – causes, treatment, prognosis, etc. WebMD can tell you all of this, but then you have to ask yourself – how much does WebMD actually know? If you think about it, online articles only hold a collection of information based on research, experiments, and other scientific and objective methods. Wouldn’t you want to hear it firsthand from someone who actually has the illness? More than the facts and statistics, it will give you hope. There are people just like you, and they looked at this illness as an opportunity to challenge themselves, to grow closer with their families, and to live each day without allowing their illness to take control of them. There’s no reason you can’t do the same.
An article in the NY times (http://www.nytimes.com/2011/02/10/health/views/10chen.html?_r=0) discussed how sharing patient stories helps improve health, even for the patient themselves. Although the use of storytelling in medicine hasn’t been through a lot of research, a recent study conducted by the Annals of Internal Medicine found that for hypertensive patients, listening to other patients’ stories helped control their blood pressure, just as effectively as additional medication. The article also talked about a patient with Hepatitis B who had reservations about undergoing a liver transplant, but was enlightened upon hearing the stories of other transplant patients. Aside from learning more about your illness, patient stories move you to do something about it; it might be the deciding factor between getting a life-saving operation or not.
Considering the benefits it has for patients, a lot of websites and even hospitals have put up ways for patients to share their stories, and for other patients to access these, too. For instance, Mayo Clinic has put up a special section in their website dedicated to stories shared by patients, their families, and even the hospital staff. Healthtalkonline.org and its sister website youhealthtalk.org, boasts of over 2,000 stories on over 60 different medical conditions. Patientstories.com “offers real world outcome” regarding different medical conditions based on patients’ stories, and has even come up with their own book. Patientslikeme.com is a more personal website, allowing you to create your own account and find patients like you that you can talk to and maybe seek advice from. Aside from that, you can learn about your symptoms and possible treatment plans, too. Epatientdave.com is a website managed by a cancer survivor (Dave deBronkart) who know conducts discussions with different populations of patients.
Remember, don’t let your illness define who you are. Share your own story and learn from others just like yourself.