If you have a chronic disease or are facing a life-threatening condition, chances are you are fighting a battle on at least two fronts. First and foremost, you’re dealing with the diagnosis, physical symptoms, medical decisions, treatment and the ever-present fear of the future. You may also be carrying the shame and stigma associated with being sick.
Stigma has complicated effects both on our psyche and on our path to wellness. It can even keep us from seeking medical help and intensify the feelings of loneliness and isolation we’re already experiencing.
Stigma is all relative to how we perceive our condition and how society perceives it.
I was diagnosed with Hep C (a blood-born virus that attacks the liver) in 1985 at the height of the AIDS epidemic. I was extremely relieved because many of my symptoms were identical to HIV symptoms and, at the time, a diagnosis of HIV carried with it a death sentence. Everyone remembers how brutal the stigma associated with it was, in the media and within society at large.
Eventually, my Hep C became chronic, debilitating and carried a stigma of its own. This virus has a certain “dirtiness” associated with it, mainly because a percentage (over 60 percent) of its transmission is associated with intravenous drug use, rough sex, and unlicensed tattooing facilities.
I was very fortunate that my disease never defined me, nor did I allow it to reflect on who I was in my personal and professional life. I never hid my condition from anyone. As a matter of fact, I freely discussed my diagnosis and my fierce commitment to live my best life despite my illness. Sometimes I was scared of people’s reaction, but I was determined to stay in my integrity at the risk of being shunned.
Stigma attaches itself to many other diseases, from psoriasis to diabetes, cancer, obesity, mental illness, neurological disorders, etc. Sometimes, stigma can even prevent us from going to the doctor or seeking the cure we need.
Here are a few steps to help you shed any stigma associated with your condition:
1. Own Your Condition Fully: Face it head on and head high. Denying it only robs you of your power. Sure, it takes time to confront the facts and flush out our initial emotions, but eventually, we have to pull ourselves together and own our condition fully. It has a name. Don’t be afraid to say it out loud. People will respect your honesty and openness and you will feel more empowered by standing in your truth and integrity. Don’t let it limit you as a human being. It may limit some of your capacities but don’t let it limit your spirit and your right to live your very best life! Embarrassment, shame and guilt only lead to low self-esteem. There is no shame in having your disease or living with it. If some people have a negative reaction to it, it is their issue, not yours.
2. Join A Support Group: There are many support groups available for most health conditions, offering in-person meetings and/or online support. Connecting with other people undergoing the same challenges and sharing similar experiences is extremely beneficial. The emotional support lessens the burden you already carry and eases fears and anxiety about your conditions. Additionally, many support groups offer valuable resources, medical information, books and other educational tools. Consider volunteering as well. There is nothing better than to pay it forward.
3. Use Your Challenge To Fuel Your Growth: Every problem carries with it an opportunity to learn and to grow. A health issue immediately reshuffles your priorities and expands your inner resources. Become aware of what and how you think, of the inner dialogue going on inside of your head, and make a concerted effort to do everything in your power to improve the quality of your thoughts. Focus on the positives aspects of your life, choose (yes, it is a choice) love and gratitude over negative emotions. When you notice your thoughts spiraling in the negative, bring them back gently to positive and uplifting ones.
Doing nothing about stigma is no longer acceptable. It is our responsibility to shed it first from our life, and by doing so, we will encourage others to see us for who we truly are.
Toni Feldstein is a Hepatitis C survivor and a passionate advocate on behalf of patients struggling with liver disease and fighting to get access to new effective treatments. She is a certified life coach and mentors individuals who face chronic or life threatening health conditions by helping them shift from fear and uncertainty to joy and happiness (www.IntegralBloom.com).
Medical information and statistics provided by CDC.gov, http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5021a2.htm, http://www.health.ny.gov/publications/1803/.