I communicate with people all around the world who have my disease. It’s a rare disease but there are enough of us to share common experiences. One of those experiences, things I hear a lot about, are people’s frustrations with hearing that we don’t “look sick”…more specifically that because we don’t “look sick”, people don’t understand our journey and this makes us feel lonely and confused.
I’ve felt that way from time to time. I know there have been a few people who have judged me. I’ve gotten “the look”, the eye roll of misunderstanding laced with repulsion. I’ve heard “the tone”, filled with distrusting animosity when I speak about my illness. I’ve even heard it, subtly at times, from some of my own family members.
We live with an invisible illness that is tucked away deep inside the corners of our bodies where our immune cells quietly but disdainfully reek havoc on our core. There is nothing glamorous about our disease. It is not well known and when it is “googled” or otherwise lazily researched, little accurate information is presented. The chronic grinding nature of this disease is not well documented.
May of us hear about how “good” we look, as if looking good means we are either better than we represent ourselves or not as sick as someone with a “real” disease like cancer or Alzheimer’s. We feel accused of being fakers.
All of this used to bother me. I used to become outraged at the thought that someone might not believe me, as if their disbelief somehow invalided me. It hurt. I felt alone, betrayed and abandoned by the judgement of those who could not possibly understand.
I am several years into this journey now though. I have developed a lot of different strategies to cope and one of them is amnesty. I am quick now to forgive those who do not understand. After all, how could they. I allow them their judgement of me, because I know that it does not reflect poorly on me but on them. I’ve turned the tables. I pity them right back because I now know that anyone who cannot be empathetic, is not worthy of my energy.
Being able to forgive those who know not what they do, frees me of the burden of their fear. Their fears and uncertainties and insecurities are not my problem even if it is my illness that brings those things out in them. So today, I strive to forgive because forgiveness makes me stronger. I strive to forgive because forgiveness frees me of loneliness. I strive to forgive so that I can forget about it and be happy instead.