Invisible illnesses are all around us. Because we aren't always able to tell what a person is going through, it can be hard to know what to say when faced with people we know having (their version of) "flare days". Flares can affect any part of the body at any time and very rarely give any insight to their onset. Sometimes flares can be avoided based on the lifestyles we live, but no two people are affected the same - even if they have the same illness.
I have both physical and mental chronic illnesses. The two have very different manifestations, although both will almost always have the same goal: to make me as miserable as can be for as long as possible. A few times a year, the two collide in ways most people couldn't even imagine (including fans of Kubrick and Hitchcock). Taking that into much consideration, I am usually very honest, blunt and on point when I express myself on flare days. I understand that there are entire populations of people who cannot fathom what I go through.
Knowing the consideration I do take when I educate others on my illnesses, I decided to compile a short list of the three things people seem to say to me all the time. Now, these people I am referring to, they have all been educated (usually by me personally) on my area of complaint. So these aren't noobs to the cause.
Chances are you know a few people (or are a few people) who really do never know what to say to us while we are suffering from a flare attack. Chances are you have struggled with what to say to someone who experiences flare days differently from how yours play out. The words we use to express our concern, sometimes can do the most harm. Hence the list ahead.
What I want to address most in this post is that it is always ok to sympathize. But if you are still tossing these three things into conversations with Spoonies; or you are still hearing these things and need some help speaking out, this is the post you'll want to bookmark and share.
Never Say These Three Things to Someone with an Invisible Illness
This is the absolute WORST possible thing you could possibly say to me when I am having or am in the midst of a flare day. There are many derogatory, mean and offensive things you can say to me in the course of knowing me, but “I’m sorry” takes the cake. Believe me, I know you mean well when you apologize for my flare. I know that you are trying very hard to sympathize with my pain. That’s why 90% of the time, I grin and bear it.
So what’s the problem?
Saying “I’m sorry” is something that is so overdone it’s become more like a joke. I’m serious. People say “I’m sorry” for so many reasons, none of them heartfelt, none of them meant in a way that matters. We apologize for running late, we apologize for bumping into someone, I have a friend that actually calls me and opens with “I’m sorry to bother you but….” For real? She and I have had many a conversation about this. So the problem when I hear you express words like “I’m sorry” in response to my very honest answer of how I am feeling (thank you for asking at all, by the way!), trivializes my pain and makes me think you honestly couldn’t care less. Because apologizes are thrown around more than thank you or “have a good day”.
It’s the deeply negative connotations that “I’m sorry” comes with. This is an epidemic. W e need to focus on the positive! No, reminding someone that Green Book won an Oscar in response to them telling you a relative died is not the answer. But I would appreciate “Yeah. Icky. Hey, did you know Green Book won best picture this year? I figure that might distract you from your pain today” a lot more than “I’m sorry to hear you are hurting.”
My other issue with offering an apology in response to my agonizing lament of my various invisible illnesses is that it’s just so damn formal. I don’t have time for formal. You sound like my doctor when your immediate response is “I’m sorry”
Instead try to offer acknowledgement. Let me know you heard me. Try “oh wow! :: happy thought ::” Or, even better and if you are daring and caring enough “Is there anything I can do?”. That one you’ll need to really mean though. Or else you’ll loose your spoonie friends. Quickly. Follow through and stability are practically required of anyone in our lives that we take even remotely seriously. That brings me to…
gifts for your spoonie friends
"I wish there was a way I could help you."
No, you don’t. But you feel the need to throw it out there. To look good and to check something off your list that day. This is easily the most hurtful statement on this list (and I was ruthless when making the list and cutting it down to just three). As soon as the words “I wish I” come out of your mouth, you have made everything about you. You have decided to twist the conversation and make it about you. Not only is that not even close to ok, it’s severely damaging to your relationships.
When I express to you the pain I am feeling, I have already reached a “don’t hold back” point somewhere in my brain. If I answer you honestly, you are a person I value in my life (or you have just pissed me off. You’ll have to note what tone I use when to understand the difference) and I am opening myself to you. I am making myself vulnerable to you. Don’t make it about you and tell me you wish something. Trust me, everyone I encounter “wishes” they could help or do something for me. There’s a precious few who actually do anything.
Instead try to come up with a way you actually can help. Spoonies know your limitations. We know you don’t have a magic cure all and we don’t want you to give us one. We have regular medical staff for that, thank you very much. Offer us something we need. Ask me if I am up to a coffee date, better yet, offer to bring it to me on a particularly bad day. Just be careful when you offer advice or you run the risk of saying this last bitch on the list…
"Have you tried...(medication, diet, exercise, etc.)"
Are you serious right now? Like, really and truly serious?
As I mentioned above, we spoonies have entire teams of people offering us ways to improve our quality of living. On top of that, we are members of communities (or even a lot of different communities) pertaining to our illnesses. You, however sweet you may be, have absolutely NO IDEA what we have been through on our journey. Most likely, we have already accepted that this is just how our life goes now. We focus on having the best life we are capable of having.
When you, who perhaps had a migraine last week, suggests I try Advil instead of my standard Tylenol for my Fibro migraines, you don’t even realize that I am not able to take anything BUT Tylenol due to my history with kidney issues. You also don’t understand that I pierced my Daith in order to limit these migraines; a process that 100% worked. When I have a migraine, don’t suggest how I care for it because you had a headache after your kid spit up, wife cheated and you got fired last week. Trust me when I say mine make that look like a fairy tale life.
If you are a person who is close to someone with an invisible or chronic illness and you aren’t sure what is medically best for them - Just.Shut.Up. It’s that simple.
Instead try to empathize. You may have no idea the severity of someones pain at any given moment but you do know how much pain you have been able to withstand in your own life. Whether it was a broken arm or your boyfriend left you, you know what pain is. You can empathize. Don’t see our illnesses and pain as some astronomic thing you couldn’t possibly fathom (although it likely is).
great books on invisible illness:
So what I would like for you to do
is to ask questions. Preface every conversation with “I don’t ever want to offend, but I want to learn. Can I ask you some questions about your invisible illness?”. You’ll be amazed at the response you get. Even if you only have one person you want to understand better, or maybe your sister has Fibro and your boss has Chrohns. Although both invisible illnesses, they are nothing alike.
Above everything else, no matter what you do or say, always remember to be kind. Be understanding because we go through hell on a regular basis and it SUCKS. We have few who are close to us that we trust unconditionally. Losing our friends hurts so much because we don’t know how to make new ones that don’t have our problems. Be the light for us. Love us. Please, don’t judge us.
I am challenging you!
To go out of your way - right now - and talk to someone with an invisible illness. Go ahead and get uncomfortable about it. Get deep and nasty. Ask hard questions. How will someone like me, change your life today?