Chronic illness is complicated. When one is newly diagnosed, there is a challenge of learning how to explain your illness to others, and learn who to let in on your journey of ups and downs. Here are some of the common reactions we get when we see clients who are newly diagnosed with an illness, trying to navigate a world of stigma and shame. "Why would anyone want to hear about my illness? And what's the point of talking about it- either way I have to deal with it and I don't want pity. I hate burdening my loved ones. What if people change how they think of me? What if people ask embarrassing questions or have judgmental reactions?"
Honestly, these are all valid concerns! We spend time talking with clients about each of their questions and also encourage them to tell people who are safe, and to only disclose what they are comfortable with. We also know that not everyone benefits from a support group, and that everyone reacts differently to their diagnosis. Some may want to externally process every detail of their illness with many loved ones, some may keep things completely private, and then there are people in the middle.
One thing we know, regardless of who you tell, is that chronic illness is not easy, and is a lifelong challenge that should not be done alone. An amazing organization is out there called the Great Bowel Movement. Their mission is to help patients embrace their disease, be proud of their experience, and spread awareness throughout their communities. We at Oak Park Behavioral Medicine are proud to know the founders, and are encouraged at just how many people are choosing to wear their "Ask me" shirts in order to diminish the stigma there is about illness, just by starting conversations with people. What a simple, yet incredible idea!
One person who did not openly talk much about his illness was Internet pioneer and activist Aaron Schwartz, and a Rolling Stone article briefly mentioned his ulcerative colitis and described it as "a condition that would embarrass and plague him for the rest of his life." He was a well-known blogger and did not talk about his illness much, and when he committed suicide this year (despite being part of a well-known lawsuit), it made me stop to think about what role chronic illness has in suicide. Does living with a chronic illness put you at higher risk for suicide? What toll does hiding embarrassing symptoms day after day from others take on someone? I am not implying that everyone needs to blog about their illness, as suicide is much more complicated. But I am suggesting that social support and openness about your illness may help prevent depression and suicidal ideation.
Its not something people talk about very often, but its something that needs to have light shed on it. Chronic pain is a known risk factor for suicide. In a recent study, it was found that significant predictors of suicidal ideation was both distress in interpersonal relations and self-perceived burden to others.
Another study found physical illness constitutes a significant risk factor for suicide, independent of psychiatric and socio-economic factors. This same article states that previous epidemiological studies have indicated an increased suicide risk associated with cancer, diabetes, epilepsy, multiple sclerosis, stroke, myocardial infarction, and allergy.
So in order to bring awareness to this important issue, we are beginning the discussion. We encourage you to speak up. Dial 911 or a suicide hotline if you are having suicidal thoughts. Reach out if you are struggling. Push through the hopelessness and depression, and let someone know how you feel. Call a loved one if you need help. And when necessary, enlist a professional to guide you along the way. You may be surprised how letting someone into your darkness can be helpful and give you hope. You are not alone.