How many “what not to say” lists have you seen recently? As we are just past Invisible Illness Awareness Month, many of them seem focused on what not to say to your sick friends … “Top Five Things That Will Make Your Migraine Suffering Friend Throw a Hatchet At You”…. “Ten Things That Are Worse To Say to a Friend With Fibromylagia Than Fibromylagia Itself.” What if you are the person with the invisible illness? Now that social media has taken care of all of your friends and they are scared to say anything to you, do you just get to judge and reward/punish them? Are you, say, “judgment proof” because of your illness?
You may guess that my answer is, no. And while I don’t like preachy “don’t do this” articles, I know that being sick means relying a lot on the kindness of others and the care and support of your friends and family. And I don’t want you to drive these people away. OK, some people don’t run that easily, but it is those very people who will put up with all of your crap that deserve it the least. In a perfect world, everything balances and the fact that you are sick means you get a free pass. Sometimes it does. But not always. So, in one of probably many moments of hypocrisy, here is my preachy Top Five Things That An Illness Does Not Let Anyone Do list:
First: It does not allow you to be a bitch or treat other people like crap. OK, this one is hard. People with chronic illness have good days (by their own warped standards – all of their well-meaning friends might recoil in terror if they knew what constitutes a good day for their ill friends) and bad days when they can list 1000 terrible things that would be better than what their illness is doing to them. Of course you should get a break if you are not acting like Miss Manners during a flare. But here’s the thing. Chances are, if you are having a bad day, you only will interact with those closest to you. These are the people on whom you rely on for even basic tasks when you are really sick or hurting. These are the people who would take a bullet for you. And now, these are the most people most likely to take the bitch bullet. When it’s me, I know myself and I know I can’t always help it – so in those cases, I try to preface it with something like “I know I am being an unreasonable bitch, and I will buy you a car if you put up with me.” Or something. Just so that they don’t feel abused while they are helping me at my worst. Also, sick or well, try to deploy words like “please” and “thank you” as often as you can remember. I swear, it makes a difference. And if you have to go about your “normal” life on a bad day, the random people you meet don’t know that you are suffering Hopefully, they all abide by that saying (that I paraphrase here), be kind, because you never know what battle someone is fighting. But back here on earth, where they often don’t, two things come to mind. First, you have no idea what these random people are battling, and yeah, it could be just as bad. My guess is that each of you has a story about some random stranger that went batshit crazy on you for breathing in his general direction when he has a hangnail, or something, and you inconvenienced him by keeling over in aisle 5 (when he was in aisle 6). Some days, by comparison, you have the hangnail, and you may not know that the other person is keeling over on the inside. Second, it is not their fault that you are hurting or that they don’t know. Maybe you don’t care what a random stranger thinks of you, but I generally don’t like to leave the “raging bitch” impression behind. And you never know if that person always will be a random stranger. Like the guy you cursed out on the way to an interview … or grant proposal … or audition. … may be across the desk from you. Ooops. These things really happen, and not just on TV – and unlike on TV, it isn’t so funny IRL.
Second: It does not entitle you to VIP treatment (beyond reasonable accommodations for your illness or injury) or free things – especially if you don’t ask. I once was at a general admission event where a woman claimed a spot close to the stage and basically tried to create a circle Where No One Else Can Stand (on the floor, right in front of the stage, you know – easy place to carve out a mile or so for yourself). When someone dared to stand and cast a small shadow in her direction, she went on a rampage about how she has pain every day of her life and she deserves a fun night out – and no one is going to ruin it for her by standing in front of her … even those who got there first. Everyone hated her. Meanwhile, I was recovering from surgery and had crutches for extra support/protection from jostling. I didn’t explain why I had the crutches or ask for anything. Everyone was kind to me, and no one tried to push in front of me. (Side note – there were disability/illness accommodations that had quite good viewing access that she could have asked after – I DID ask about that, but our group could not have stayed together, and it wasn’t a bad day, so I passed). You all know someone like that other woman. Whether they want premium spots at an event with no assigned seating, or better seats where there is, or to get out of a parking ticket, or to get an extension on a project, they have absolutely no issue playing the Illness Card – even where it has no relevance to the situation at hand. I am not saying that it never is appropriate to see if you can get something special, or a freebie, or an out from something. No matter who you are, you always can ask for the VIP area, or an upgrade to first class, just like anyone else, and if you feel like confiding in the gatekeeper that your illness makes it difficult for you to be treated like everyone else, I am all for it. And if you are having an awful day and need some extra consideration, that is fine too. But the whole world owing you because you are sick? I just don’t think that flies (pun sort of intended). And thinking that you can break the rules because you are sick? Or lying about or exaggerating your illness to get some special treatment? Just no. And this isn’t because I am such a rule follower (though I am), but because – and I think most of us can agree on this – rationalizing bad behavior as entitlement due to your health reflects badly on others who battle illness and ultimately can hurt them. And you know your people from number 1, the ones that get all of your bitching? Some of those people – shout out here to my poor partner in crap husband – often go out of their way to do special things for you. So either they get that VIP pass for you, or they do something else special just for you, where no other special accommodation is necessary. Just another reason not to be a bitch. Maybe this one is on my list because of my aforementioned lethal rule following nature, but in my opinion no illness is a free pass to lifetime special treatment. If people want to do nice things for you because they know you have been ill, by all means let them. But the world doesn’t owe you because you got sick, and the same people you may hate for not playing along may be dealing with something worse. And that gets us to …
Third: It is not a reason to engage in contests from hell that no one should want to win. We all know that person. You both catch a cold – you cough once, she makes a show of coughing to the point that she pukes up something she ate in the third grade (in a scene that she likely intended). You had a bad pain day? Well, SHE had to take extra medication because her pain was worse than yours, but she still had to go to work, shop and cook for her whole family, solve global warning, run the PTA meeting and run three marathons. On crutches. Just don’t be her. Enough said. For further reference, we can read all of those what not to say articles that your friends read before they talk to you. (Yes, we all have our lists of what we don’t want said to us, but we shouldn’t presume that we know how to act to other sick people in all situations.) And then of course there is the battle of “Which disease is worse?” They all suck in their own special way. Don’t do it. Life threatening diseases suck. Diseases that don’t kill but make you feel like you are dying suck too. There is no prize for sucking the worst. Same goes for your friends who have the same illness. If your friend has a new unbearable pain, maybe you don’t need to tell her that you doubled your pain medication today and also you threw up and couldn’t feel your foot for five hours. Sure, you can share and commiserate, but there is a fine line between that and “You think YOU had a bad day?” that we should not cross.
Fourth: It does not allow you to make others feel guilty for not being sick, or living happily despite being sick. Friends don’t appreciate being made to feel like shitheads for having happy things. So if you can’t stand to read another post about someone’s wonderful husband/kid/dog/third house while you are in fetal position on the floor, or just are grumpy, hide them. Or make fun of them with your spouse/significant other/pet frog. Don’t make them feel like shitheads. Unless they are repeat offender braggerposts, in which case all bets are off. I used to analyze every post to make sure I wasn’t accidentally upsetting people, especially a couple of people I knew to be incredibly sensitive on certain subjects. Finally, my husband made a couple of very fine points – these same people never would consider my feelings as much (well, his bigger point is that he never saw someone worry about a post so much – yes, that too is a whole other post), and that I too have my own share of crap and no one should begrudge me the happy and fun parts of my life. Boo-yah.
Fifth: It does not permit you to become the savior for your disease. Don’t. People hate it and you won’t get the support you need. I am all for raising awareness and funds for research for whatever disease you want, including your own, but there is a fine line between advocacy and martyrdom. If you want to do something to help, that is wonderful. Just don’t think or act like you are the first person to ever do it. The world needs saving for sure, but you aren’t going to do it on your own, and trust me, you will not get people on board if you are acting like you can. Also, keep in mind that there are many people who have come before you who have devoted their careers, and sometimes everything else, to eradicating your disease – you aren’t inventing the wheel and it is insulting as hell to them to act as if you are. And if your friend with the same disease doesn’t want to do the 5K with you, or doesn’t want to go into medicine to cure your shared disease? That’s OK too. Chances are, she barely has the energy to get out of bed. And maybe her mortgage is bigger or her day job requires every hour she can work, or she has two kids and half a dog to feed. Or she just doesn’t want to. Any or all of those reasons are OK – or they have to be. The last person she should have to explain herself to is someone who should, in theory get it, even if her life doesn’t match yours besides the disease.
Having a chronic and/or invisible illness is difficult enough by itself. Hopefully, this first nugget from my list of “things I have learned from dealing with a lot of crap” will help you and prevent you from making mistakes I have made or of which I have been the unintended (I hope) target. The people who help you, as well as the people who share your illness, are priceless, and none of you have the time or energy to be doing anything on this list anyway.