Believe it or not, I used to be very private about my chronic illness. I was terrified of being judged and invalidated, and this is because I had had so many negative experiences in the past when I did open up about my illness. I had family members who told me I was faking my symptoms. People at work disrespected my request to keep my illness private. And friends didn't understand why I didn't want to go out with them. Although their responses weren't very kind or empathetic, I don't hold it against these people. I realize now that their responses had nothing to do with me, but at the time, I let them influence my decision to remain silent about my illness.
FINDING MY VOICE
After I received a formal diagnosis, I decided it was finally time to start speaking more openly about my experience with chronic illness. Having a diagnosis and a doctor who was willing to back me up gave me the confidence I needed. Discovering that half of the United States population is living with some form of chronic health condition made me realize that I was not alone in my struggle. I knew I needed to start speaking up so that others would know that they were not alone. I knew that if my voice could help someone, it was worth risking judgement and rejection.
CREATING A SUPPORTIVE COMMUNITY
To my delight, I have been met with more support and love online through the Sleepy Santosha community than I have ever experienced anywhere else. There are always going to be people who don't get it, but they are far outnumbered by the kind and empathetic people that I choose to focus my energy on now.
Although I am more open about my chronic illness now, it doesn't mean that I have no boundaries around when I do and do not share. When I think about disclosing my chronic illness to someone now, I always ask myself the following three questions.
WHY DO I WANT TO TELL THIS PERSON? DO I ACTUALLY WANT TO?
We are never obligated to tell anyone about our chronic illness. We don't owe anyone an explanation. Even if you're someone who shares aspects of your illness on social media, that doesn't necessarily mean you owe someone the face-to-face interaction. You get to decide how much you do and don't share with someone.
IS IT NECESSARY?
This is a question I typically would ask myself in professional situations, always remembering that we are entitled to our privacy at work. If you do decide to disclose your illness to a supervisor or HR, you can ask them to keep it confidential, and they are obligated to do that for you. Disclosing your illness at work is really only necessary if you are asking for accommodations of some sort. Otherwise, it is perfectly okay if you choose to keep it to yourself.
Another situation where I might feel it is necessary to disclose my illness would be if there is potential for an emergency to happen. For example, if I were injured in a car accident, I would need the people around me to know what to do. I would need them to know that I carry an emergency injection kit because I have Addison's disease, so anytime I get into a car with someone, I will disclose my illness to them so that I can feel safe.
IS THIS PERSON SAFE?
While I do believe it is important for us to tell our stories in order to break the stigma surrounding chronic illness, I also believe it is okay to use silence as a form of self-protection. Some people are not safe, and it is okay if you choose not to share details about your health with them. Some people are not capable of understanding, and that's okay. You don't need their understanding in order for your experience to be real and valid. Save your energy (Save your spoons!) for the people who will be receptive, supportive and loving.
If you do enter into a conversation with someone who ends up belittling, invalidating, or abusing you in any way, you have the right to walk away at any time and without explanation. Protect your energy!
You deserve love and respect from yourself and from others. Always.