How many of you feel like you spend half of your life explaining your illness to people who don't believe you?
Let's be real here, a lot of us have experienced reactions from people about our illnesses that often lead to negative thoughts about ourselves and our struggles. I've often found people making the above comment after I've already explained my illness to them multiple times. Either that or it's usually followed by silence, lack of knowing what to say, repeating the words: "I'm sorry" or the famous line of: "I can't even imagine!" While all of these are not necessarily offensive things to say, they can make someone who's already struggling enough often feel like they're just a massive burden or like they're just crazy.
If you respond with a statement about how you didn't know when I've already opened up to you about it, it tells me you weren't listening or you didn't believe me. If you respond with "I'm sorry" followed by silence I often feel guilty for talking about it at all because I was never seeking for sympathy.
So what is the chronic illness community looking for as a response? Well, first of all, I understand that nobody is truly going to understand what it's like unless they've been through it themselves. But you don't have to completely understand to offer love and compassion to someone who is suffering.
When I trust you enough to talk to you about it PLEASE LISTEN. Follow up "I'm sorry" with reminding me that I'm not alone, I'm loved, and I can do this. Offer words of encouragement and hope. I need somebody to fill my painful space with love and compassion, not rejection and astonishment. May we all try harder to respond to anyone's struggles with greater kindness and love.
Comment below if you relate how you would like others to respond when you open up about your illness!