This is a reply to an email that I recently received regarding my campaign on Go Fund Me. I purposefully have abstained from naming the recipient. The person actually was trying to be kind and give what they thought was good advice. Also, my response wasn’t necessarily only aimed at them. Their email triggered a reaction in me, and I thought it best to send this out as an open letter instead of a specific reply to a specific recipient.
To Whom It May Concern –
First, allow me to say thank you for your aid. I really do appreciate your kindness and generosity. I am truly grateful for the gift.
Second, I would like to address the advice that you gave me. The fact that I should probably look sicker (my understanding of the gist and not your words) is duly noted. It never occurred to me that anyone would assume the red brick building my family and I are posing in front of on our wedding day was our home or because of that belief, my need should be deemed unworthy. In fact, it is the county courthouse. It also never occurred to me that having healthy children would bar sympathy for me.
I understand that I “appear” healthy. That is a challenge that I have faced my entire life – the fact I look healthy is part of the problem. People look at me and think that I am undeserving of their compassion or even their time because I appear “healthy”. Chronic diseases that are terminal don’t always show on the outside. Epilepsy, multiple sclerosis, familial pancreatitis, cystic fibrosis, fibromyalgia, mental illness, and countless others – none of these diseases show on the outside. Short of showing you the scars on my abdomen, chest, and back from my numerous surgeries, I cannot show my frailty or publicly prove my illnesses.
While I understand that you are trying to be helpful with your advice about the pictures in the campaign, it is actually extremely hurtful. Your advice, while given in good faith, has just reiterated the same lesson I’ve had countless doctors, nurses, medical staff, social workers, government agencies, teachers, acquaintances, friends, and yes even family beat me over the head with – unless you look bedraggled, unkempt, in a wheelchair, missing a limb, blind with a walking stick or in some other way visibly handicapped, you must actually be well.
I cannot begin to tell you how incredibly cruel and hurtful those beliefs are to me. The scars that I have from all of the slings, arrows, and well-intentioned advice are more numerous than the physical scars that I bear from my various life-saving surgeries and procedures.
In short, I am wounded. I weep from the pain of it. It hurts to be reminded that because of my appearance, I am deemed unworthy. Your advice was probably meant to be kind, but you are just one more person to stab at me. Please stop hurting me; I can’t take anymore.