We visited with my 93 year old Aunt and my Parents, the other day. As we were getting ready to leave, she said: “Stace, mark my words, this wedding is just what you need to get better”, right before saying “you look great, Stace!!” What I know she meant as a compliment and as a beacon of hope, instead, cut me like a knife. So before I go on to explain why seemingly innocuous comments (or not) can hurt so deeply, here’s 10 of the rudest/dumbest/most insensitive comments I’ve received since becoming chronically ill:
- How sick can she really be?
- You already knew you had Lupus-why would you be upset to see the same diagnosis in writing?
- Fibro is that disease that people get when they don’t want to work
- My friend had Fibro and cured it by eating celery
- Everything is normal, have you thought about seeing a Psychiatrist?
- So why did you feel you needed to go to the Emergency Room?
- If you want to get out of doing it, just say so
- So, what do you do all day?
- (my sibling to my Daughter) Yeah, I know your Mom is “sick“
- (when reviewing a note from my Doctor) Patient claims her whole life has been affected since getting sick
So, back to my Aunt for one second…….am I really that sensitive and unable to take a compliment or that something this innocuous offends me? No. I’m not. And neither are you.
I am super, super close with my Aunt; in fact she’s probably the person I am closest to in my whole family and she is one of the very few people who “get it”. She struggles tremendously with chronic pain and it has caused some pretty dramatic mental health issues. This commonality further forged what has always been a really tightly knit bond.
So when she says something like “you look great” or that my Daughter’s wedding will cure me, it doesn’t mean just that; not to me. Instead, it’s this super complex emotion of living with an invisible illness: I may look “great” with a little makeup on, but I just spent three days on the couch. Or by saying that a “wedding is just what I need to get better” somehow implies that I have any control over my illness or that there’s hope I will get better. Both of those are things I long ago gave up on-so it makes me sad she still holds on to them. But that’s my interpretation-not her meaning.
So now how do we handle comments like this or any of the ten I listed above?
- Recognize the source. I absolutely know my Aunt would never say anything to hurt me. Instead, she constantly praises me and prays that I’ll get better. Understanding the reason behind the comments often can eliminate any negativity you interpret from them. This also applies to toxic people you have in your life; like siblings who tell your child you’re faking. You cannot expect an ignorant person to make thoughtful comments or have meaningful questions. They’re ignorant.
- Remember that the term “invisible illness” was coined for exactly that reason; it’s invisible. And anything that can’t be seen is difficult for people to believe or understand, like Santa Claus. When someone says they’re sick, people expect to see someone ravaged by disease. To instead see someone who looks fine or normal is difficult to understand for many.
- Why is the comment being said? Look at the context. Is it to get back at you or insult you? Or is it truly just a case of disbelief, not knowing what to say or awkwardly trying to offer help??
- Remember that illness can be frustrating. Not just for us, but for those who care about us. When I married Bri, I was nothing like this. Neither was our life or the expectations we had for life. As challenging as it is for us to adjust to the new norm, it’s just as difficult for the loved ones in your life. Limitation is frustrating.
- Sometimes, a question is just a question. A statement just a statement. No more, no less. It was actually my Mom who said “so what do you do all day?” It hurt, I won’t lie, but I had to step back and remind myself that she was just genuinely curious. She could never be expected to understand all the complicated context that I surround such questions with.
- Remember, sometimes we just want to be treated the way we used to be treated. If you wish for that, then having people be authentic and real and talk to you without thinking means that they will absolutely put their foots in their mouths. Do we really want everything said to us analyzed before it’s said? I know I don’t.
- People who have never dealt with illness or health challenges have no point of reference. It’s super hard to relate to something you’ve never encountered yourself. It would be like telling the Queen of England that you got a great deal on toilet paper at Target.
- As for Doctors. I have no patience here. They get no outs from me. So when it comes to them, if you have one who is belligerent, unsympathetic or dismissive, find someone else. Our whole lives DO change when we get a disease that cannot be cured. That’s a fact.
- And last, but certainly the most important, trust yourself. Trust you are the same lovable, intelligent person you were before you got sick. Trust that you did feel you needed to go to the ER. Trust that you know you are that sick. Trust that you do need extra time to do things. Trust that you are not a faker. It’s one of the hardest lessons I’ve had to fight with; trusting myself enough to know what I know.
Being sick comes with all sorts of challenges. Certainly people’s responses are included in that. So next time a comment cuts you to the core, before reacting, consider the source.