It's hard to be lonely but even harder to be in a crowd where my daily suffering and extreme efforts are dismissed in one fell swoop by a comment about how I look. I want to say "I'm chronically ill folks. I may look normal to you but I am sick. It took me days of mental prep, hours of mustering up strength to groom myself, and I had to take extra medication to control my IBS, nausea, heart rate, and vertigo to be able to make it here. After I go home, it will take me hours or days to recover. Please do not diminish me by telling me that I don't look sick. "
I know that most people don't realize how hurtful their comments are and in fact probably think they are making me feel good by saying I look fine. However, I also believe that there are others who think to themselves that I have some sort of mental illness, or worse, that I am faking being ill just because I don't look like what they think I should look like to be so ill. Either way, I have learned to smile as I say "thank you" but inside I grieve with frustration.
I know many spoonies write about this so at the risk of being redundant, here's my list of things I wish people wouldn't say to me when they see me. And what I'm thinking sometimes when they do. ;-)
My list:
"You don't LOOK sick!"
What I'm thinking: "And you don't LOOK insensitive. But that comment feels like you do not believe that I am indeed suffering with a chronic illness. I wish you would recognize and acknowledge what tremendous effort it took for me to be here instead of making a comment on how I don't look like what you think a sick person should look like."
"You must be doing better!"
What I'm thinking: "Really, must I? You have no idea how I'm doing and your words diminish the hard reality of what I live with every day and what it took for me to be here. It is OK to ASK me how I am doing if you want to know but please, do not make observations and judgements. They hurt. A lot."
"There is a reason for everything." or "It's God's will."
What I'm thinking: "Honey, I'm here to tell you that there is no good reason for many things. There is no reason for chronic suffering, period. I don't need to have my strength tested or learn anything from pain/illness. I can learn and be strong just fine without it, thank you very much."
"I hope you feel better soon!"
What I'm thinking: "I'm chronically ill! I am not going to feel better soon!" I know this phrase is meant well and that people really do want me to feel better but it's still hard to hear. I wish you would say instead: "I hope that today is a good day for you."
"You have to stay positive".
What I'm thinking: "I have lost the ability to do almost everything I love doing. I am sick every day. I can't walk. I have a genetic condition that has left me disabled and I will never be the same again. Unless you are walking in my shoes, please stop telling me how I should feel."
"You should do this or try that, etc."
What I'm thinking: "Please do not tell me what I should be doing. Trust me; I am doing everything in my power to be well. I have seen umpteen doctors, researched incessantly, tried multiple medicines, diets, activities, desperate bargaining, and positive thinking to name just a few. If I want your opinion or advice on my illness, I will ask. If I don't ask, please keep it to yourself."
So that's my list.
I want to qualify this post by saying that I believe that most people are good folks and have good intentions. Their comments are not offered with malice. If you are healthy and happen to be reading, my hope is that this post will make you think before you speak when you know someone who is ill. And for those who are ill, I hope it helps to know that someone understands and shares your frustration at just another aspect that makes a chronic illness difficult and complex to live with.
To be fair, I should probably write now what is GOOD to say to the chronically ill, but because I'm ill, I'm too tired to make another list! Instead, I'm copying a list posted by someone I follow on Twitter (thanks to @LilacZebra and it looks like it comes originally from a place called highanxieties.org).
In addition to the list below, I would add that HUGS without words are always welcome. :-)
