I often feel the same way about social media that many people my age do – overwhelming thankfulness that it wasn’t around when I was a teenager, or worse, in college – or for most of my 20s, though admittedly those were pretty tame.   I also think and say a lot of things about social media that I know make me sound uncool or, really, old.

So I took the plunge five or six years back and joined Facebook.  If it is any indication of my social media savviness, I thought I was among the first to join, and aside from an Instagram account created solely to follow my children, it is my only true foray into social media.   It was a rocky start.  There were things I didn’t get (pictures of food, for example, or why I was supposed to care about someone’s daily check in at Kiss and Ride), and I did things I wasn’t supposed to (visiting frequently without commenting on any posts and being playfully (I am told!) labelled a stalker).

It is now quite a few years later; many of the babies I oohed and aaahed over are in elementary school, the older kids whose adorable first day of school shots nearly crashed my newsfeeds are in college  … the couples in wedding pictures either are having kids  or divorcing (or both)  … and there still are things I don’t get.   This isn’t to say that I haven’t ever done any of these things, either because I was “young” and naïve, or I am a bit of a hypocrite.   But still, anyone, please explain these:

I DON’T GET IT NUMBER ONE: Selfies on social media.  As in, every single picture someone is in is a selfie.  Do these people always hang out alone, or only with the other people who HAVE to be in the picture?   I am all for being careful with your camera – so, if you are on the street in NY or LA, taking your own picture may be a wise move, and I can see the allure of the occasional selfie (they can be cute, and indicate some extra degree of affection or excitement, where appropriate), but otherwise, why not let someone else take your picture?  Most people look weird in selfies.  Well, I know I do.   I never know where to look, no matter how many times I am told.  Then I add chins and my upper arms somehow double in size – I note here that nothing ever mysteriously smaller, beside my eyes, which get beady (selfie or not).  And if others are in the picture, we are different sizes.  I don’t mean that I clearly am bigger than my kids, but that it looks like my daughter can pick me up in the palm of her hand.   Slowly, I have heard tips on how to angle, where to look – and I note that the people who seem to have this down pat tend to be people who ONLY take selfies.   I get that they were a novel concept at one point, but doesn’t it seem odd for someone to prefer to both the photographer and the subject, when he or she doesn’t have to be?   Say, in the middle of a crowd at an event for thousands of people?  (By the way, those are fun places to photobomb stranger selfies.)

I simply don’t know what to make of it.  There are obvious boundaries that I think most people will agree should not be crossed – smiling selfies in front of memorials, in front of accidents – but those happen too.  Even if you can explain those away as a bunch of insensitive clods, that still leaves a lot of people who have perfected the art of looking into their own phones and taking admittedly great pictures.   This also seems to open a number of activities into Things That Others Don’t Really Need to See – that may be a great picture of you going to a black tie wedding/fundraiser/gala/Emmys, and you may indeed get the admiration and perhaps envy you were going for, but take it from an old fashioned old lady…. The effect is better just to see how hot you look, not the various stages of how long it took you to get there.  (Before a bride tries to kill me online, definite exceptions for sweet wedding day moments like you and your mom getting ready or a candid shot with your flower girl.)   I certainly may take the time to admire the finished product, but there just are some things that everyone on your friends list does not need to see.

I am not that naïve – I know some selfies are meant, subconsciously or otherwise, to make others jealous or wish they were there.   It takes the picture of “look where I am” to a whole new level of ME ME ME HERE HERE HERE.   In a purge of toxicity, I think I have eliminated or hidden most of my “Friends” who do that on a regular basis.  Like the one with albums entitled “Celebrities I Have Met” (that was a decades long brag so it may have predated the selfie).  But you know, while I occasionally may be a little envious of the selfie taker, I usually lack the time or energy to do the fun thing that my nose is supposed to be rubbed in, and pretty much any of the things that I am supposed to want to kill for would lose out to (a) my couch or bed and (b) my sympathy for the selfie taker that he or she doesn’t have someone to take his or her picture.

And the selfie stick?  I can’t even.   You probably know where I would like to stick one of those.

I DON’T GET IT NUMBER TWO (stop giggling):  Hashtags to nowhere. This one really is a head scratcher.  Even though hashtags seemed to hit their peak two years ago, I still see friends and acquaintances using them  … and even I can tell that for the most part, they aren’t using them properly, especially when trying to adapt them from their “natural” habitat of Twitter and Instagram to other social media like Facebook.   To be fair, it does seem that sometimes hashtags on Facebook lead to several posts about a topic, though it seems not as seamlessly as on other social media (from what I am told).   A quick look on the internet confirms what I vaguely thought – hashtags are meant to bring people to a common topic or thread from other sources, or in limited circumstances, to promote a business.

But when someone uses a hashtag to describe something personal – or really, several hashtags, as I have found that if you are going to use it wrong, you don’t stop at one – it serves no purpose other than to look silly.  #TaylorSwiftlive?  OK – well, I’d have nothing to post there, but I assume that if she tours, that could lead to a string of concert posts and pictures.  #goddessaccountant? #feellikeaqueen?  Um, no.  Unless you are part of a known goddess accountant group or hang with people who like to be treated like royalty, no.

You want a good reason not to, other than the fact that it is silly?  No one can read what you actually are trying to say because it is buried under a pile of silly hashtags.

Here is a sampling of hashtags from my newsfeed and those of cooperating friends:

#dairyfree #glutenfree #homemade #vegetables #stayinginrocks #nowaitforatable  … All in one post. Unless you are a nutritionist or chef, no.

Another:  #neveradullmoment #thedaysarelong #kidsareablessing #cherisheverymoment #happykidshappymommy  …. We get it.  You have kids.  You love them, and sometimes they are a pain.  Someone, call the local news.

And yet another:  #dogs #brothers #bisonfrischee #mansbestfriend #mommylovesherpuppies #dogsarebetterthancats… You like your dog.  You probably think you understand the post above about kids because you have a dog.  You have no clue.  Stop it.

This leads me to wonder ….  Is the hashtag addict so assured of his or her importance in the world that anything meaningful will come from his or her hashtag?   Does he or she understand that this self-agrandizing can lead to nothing more than a dead end and people wondering if you need a course in social media etiquette? And if they don’t get it before that, how ridiculous do people feel when their hashtags are meaningless or lead to a list of only their own posts – because no one else is using the handle?  Or are they doing it on purpose?  Can they be that self centered to take something that was supposed to collect pictures and posts from different sources and make it their own thing?   I don’t get it.  And I don’t think my not getting is just a lazy middle aged thing.   I think I safely can speak for, well, the rest of the people who use the internet when I say, STOP hashtagging your own pictures with handles that mean nothing other than various ways of, again, look at me (or, look how cute I am or look how healthy I am/how far I walked/how much I spent on this dress/ME ME ME).

Hashtags might have worked had they not been commandeered by people who don’t know how to use them.  So now, they should be left to the dial pad where the good Lord intended them. #pleasedontdoit #stopabusingthehashtag.

I DON’T GET IT NUMBER THREE:  Fake experts, no degrees needed on Facebook.  I know I was a little late to the party, but I still wonder if I missed the class on social media that said that classes were passé.  Or any sort of formal training or education.  I get that many so called professions merely need a website address and a dream, but I hard pressed to think of any business you can just open on your own that doesn’t require some sort of … actual, relevant experience?  Education?  Degree?  Yet, my newsfeed is littered with them.  Do you need a life coach?  I have twelve of them.  I cannot say for sure that even one of them has beyond a college course in psychology.  Yet there they post, inviting me to their lectures on how to achieve work life balance (I will pause here so you can laugh at the idea that there is such a thing), and how to manage my kids’ time and get them to be healthy eaters (pause again for laughter, especially when you hear that between them, they have zero children).  Their qualifications?  They range from advertising to physical trainers, without so much as a master’s degree or even a certification in coaching between them.   And sometimes representing yourself as an expert when you are not (see below) is sort of a crime.   Yet it seems that getting followings on Facebook allow them to suspend the rules.  But people, a Facebook page does not an expert make, even if it links to a fancy webpage.

And what about doctors who are not doctors?  Does accountability go out the window when making comments on Facebook or Twitter?  I cannot tell you how many times I could have had someone’s license for improper use of the title “doctor” when posting or commenting.  Any  degree other than M.D. does not carry with it the right to be called “Doctor” without some sort of qualification that makes clear that this is not an M.D. – even if the person knows more than actual doctors.  There are RULES about this.   Even the New York Times has gone batty over this (well, as batty as the Times gets over anything).   And it isn’t less dangerous on Facebook – in fact, I posit it is more dangerous, particularly if the so called doctor is offering what can be construed as medical advice, or is making a comment on a medical post or article and refers to him or herself as a doctor.   Hopefully the person still is limiting himself to the area in which he has the doctorate, but just because Facebook is not medical advice doesn’t mean that he doesn’t have a responsibility to be clear that he cannot give any.   I don’t get it – I mean yes, I do get that people like the attention that “Doctor” gets you – but social media is not a free for all, and why aren’t these people proud enough of their own degrees to put whatever extra letters are needed to show what they really are?   You want to impress me?  Start by not misrepresenting yourself.

I DON’T GET IT NUMBER FOUR: Hijacking a cause. When you have an illness, especially when you first get diagnosed and/or you don’t know a lot of people with what you have, you may make a lot of online friends with the same disease.  But I also have met people who really, really wanted to be the Facebook Face of the Disease.  There were fights, and factions, and arguments all over social media over Who Was Sicker and Whose Life Is Worse From the Disease.  As for the rest of us?  Not only did we (a) not get it and (b) not want one person to symbolize all of our diverse struggles, but (c) we had serious doubts about those who want to be defined by the illness, and wondered why it was so important to them to be THE one who is going to Save Us All.   I can’t speak for everyone, but any energy I had left after a day in the life of me with my illness just was too limited to play that game.  And to be the most famous person on Facebook with my disease?  Not interested, especially when I was giving Emmy winning performances at work to prevent people from knowing I was ill – one thing these fame seekers often don’t get is that there are jobs where being viewed as sick isn’t exactly a perk.  I couldn’t fathom why anyone wanted the notoriety.  Anyone?  (Well, the cynic in this cynical chick notes that sometimes the people who fight over this are trying to make a buck or two off the illness by promoting a product or service or making referrals from which he profits.)

But I see it with other diseases too.   You do too.  And it often is the “lucky” person whose disease gets caught early.  Treatment is much easier, recovery quicker and assurances of future good health high.  They then want to be the social media darling of their disease.  Awareness is great, but I have seen too many times where awareness is limited to the story of that person, and not the person down the street who wasn’t as lucky – and that is where the power of social media is needed most.

Similarly, people positioning themselves as the face of something they don’t necessarily have seems like a popular Facebook sport.  Clearly, people fundraise for diseases they don’t have.   Often they personally are affected otherwise.  I get that.  I don’t get when someone jumps on Facebook to demand attention for his or her suffering from a disease that he or she may not even have.   Infertility seems to attract these types, which is to me its own form of just mean/heartless/are you kidding me.  Personally, I have quite a few close friends who have struggled with it (from an isolated miscarriage to disease limiting or taking away their ability to conceive, and many in between), and it thrills me both regular as well as social media is starting to focus on infertility as the loss that it is and encourage people to come out of the shadows.  They need that.   But that friend of yours can’t be the Face of Infertility because her doctor told her that she has a tipped uterus that may make conception difficult and she had unprotected sex once last year and didn’t get pregnant.  She needs to stop posting about her infertility and publicly identifying with those who truly cannot conceive.  They hurt enough and trust me, she is hurting them.   I am sure you have a similar story, whether it be with someone who claims infertility without actually trying to get pregnant or someone who had a five minute cancer scare and goes around as the Face of Cancer, or … tell me what you see that is similar on your newsfeed.   How about that friend who had a hemorrhoid once and now publicly identifies with Chrons’ patients?  Ever spend a day with a person with Chrons?  That poor person has to plan his or her life around distance to bathrooms.  Tell your friend to shut up about her polyp and how she hashtag got so lucky and now wants to hashtag let’s talk poop.  And once you mentally go down your list of who does this, can you tell me why would anyone want or feel the need to claim these struggles as her own, especially when social media nearly guarantees you can find support for you own unique struggle?  (I mean, what group is not represented on social media?)

I think I know the answer, which is that it is classic attention seeking.  Again.  And again, it is something that I simply don’t get, and unlike the hashtag, this is where I have been in the shoes of people like this.  I understand that illness can make you do wacky things, but using Facebook to be the Face of a Disease (Real or Imagined) just isn’t something that I ever felt compelled to do.  I wouldn’t ever have posted about my struggles but for the fact that I wanted to spread some much needed awareness.  But someone still needs to explain to me why anyone wants to be famous for a disease, or to hijack someone else’s heartache to get attention and supportive comments.   And if it is keeping true sufferers in the shadows, it isn’t just an observation – it is cruel.

I DON’T GET IT NUMBER FIVE:  Posting pictures, especially of children, that should stay private. I admit, when my kids were much littler, I posted some pictures without their permission.  Nothing embarrassing, mostly just cute ones and all fully clothed.  But as they got older and understood the whole Facebook thing, I made a rule that I ask them permission before posting a picture of them, or posting something they said (they say a lot of really funny things).  I get that my rule is unusual, but when I see some pictures where it is so very clear that the kids don’t have veto power, I think that my rule is way better.

Sometimes it just is a bad picture.   Often it happens when the posting parent looks especially good in the picture (I could have been guilty of this before I made the Rule; I don’t take a lot of pictures where I think I look good – I know the child experts would have a field day with this and I would be Bad Mom for contributing to self-image problems), but the ones I really don’t get are the sick kid pictures… and especially the hospital pictures.  I know there are sometimes valid exceptions – kid gets a cast, thinks cast is cool, asks mom to post ER picture.  Sure.   Kid gets hurt/develops scary illness, it becomes a human interest story, and there is a following of people who genuinely want updates, no matter how good or bad?  By all means, parents can set up a page for that and then people can choose for themselves.  (If you follow a page like that, you know what you are signing up for, and no one is forcing you to follow.)  But aside from a couple of exceptions like that, when a little child is very sick, looks as miserable as he or she probably feels, and is hooked up to all sorts of machines and tubes … why?  Or the poor sick child finally is sleeping and just needs to be left alone … and unbeknownst to him, mom or dad is clicking and posting away.   Call me nuts, but I think even little kids are entitled to privacy, and if they are too young to say yay or nay to a picture, err on the side of protecting their dignity and privacy and put the darn camera away.  If Grandma wants to see how good or bad the kid’s coloring is, there is text or email (if Grandma has Facebook, she has text and/or email).  You can tell everyone you are in the hospital or home with a sick kid without the visual.  I will feel just as bad for you and the kid without it, if making us all worry is a motivating factor.  Do these parents like going for the shock factor?   I will be sadly surprised to read about it, and if you are the kind of person who wants to shock and aww me with a pathetic picture of your child, we need to rethink this friendship.  Awareness, if the child has a disease or condition that is related to the hospitalization?   I still think this is where 1000 words is better than a picture.

Why aren’t these parents thinking how they would feel if the sick shoe were on the other foot?   Maybe their house really is that different, but I know how I would feel if someone snapped a picture of me when I was feeling like a pile of crap.  And I don’t think there is a single picture of me in the hospital other than after our babies were born.  So I also don’t always get the pictures of grown-ups sick or in the hospital (though again I concede that there could be a specific purpose, like if you do something silly to yourself and have a ridiculous bandage or something to show for it, or you want people to understand how sick you are).  And even in those families, would the grown-ups be cool with no heads up or veto power?  I doubt it.

And again, I go back to why?  Why would you want to post a picture of you OR your kid in a bad state, especially in the hospital?  Attention again?  Sympathy?   I don’t get it, and when it comes to the kid pictures, it isn’t just me clucking my tongue.  Privacy isn’t a privilege you earn with age.  It is a right that your own parents should fiercely protect, even if it undermines whatever purpose posting the pictures might serve.  And again, what exactly would that purpose be?

WAIT, I AM STARTING TO GET IT.  I suppose that in some way, social media allows us normal citizens a taste of celebrity life – basically, what it feels like to have followers, people who care about our comings and goings.  Probably most people take that in stride, with a slip here or there.  But when I have friends who repeatedly engage in these sorts of behaviors, it screams to me that these people have transcended even more commonplace self-centeredness and just want to be the center of everyone’s universe.    Some people won’t let you share a spotlight you didn’t even know was there.

Ah, so maybe I do get it after all.    But now more than ever, I don’t want to see these things, especially if I am onto something here with the whole ME ME ME ickiness.  If my friends on social media continue to do the things that got on my “I don’t get it” list don’t start getting it themselves, I may have no choice to do what they might fear the worst – the “HIDE” BUTTON.

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.

I am just so happy to be here.  Is that silly?  I knew I wanted to start writing again outside work, even if a lot of it is about work and all of the things there that drive us nuts.  I don’t just want to write, though.  I want (and by “want” I really mean “feel compelling need”) to contribute something, in particular to help people like me who find themselves in untenable positions, whether it be personally or professionally, but in particular when illness or another bump in the road is a cause or contributing factor.  And I often hear that it is best to write about what you know.

I am not a traditional expert on anything I will talk about here, despite my vast personal experience on the subjects.   And I am kind of old fashioned – I believe that to call yourself an expert, you need to do little things like get trained, take classes, get certifications and maybe even get … wait for it …  a degree.  (Wow, I miss How I Met Your Mother.  But I digress, probably the first of many.)   I am completely against all non-facetious self-proclaimed expertise (and that probably will come up a lot – I really, really am against it, and I am a lethal rule follower).  That said, I guess life makes all of us unofficial experts on something, even if it isn’t anything you ever wanted to be an expert on.

As it turns out, in reflecting on what compelled me to start this site and this blog, I realized what I have become something of an expert on is crap.  Yes, everyone has crap.  But when I say a lot of crap, I mean it was like crap was raining on our house.  A parade of poo.  OK, not literally, if you don’t count babies.  But figuratively, we felt like whack a mole.  We would get through one crisis and, if we were lucky, we would have a day or two before the other shoe dropped … off a centipede.  The shoes just don’t stop dropping.   And living through the crap, big and small, has made me far more cynical than I expected to be, despite the fact that I went into many things with my eyes wide open.  Some crap you can prepare for and handle.  Other crap can knock you on your keister (usually figuratively, but not always).

But here is the thing about crap and even the cynicism that comes with putting up with a lot of crap– it really does teach you a lot of things.  No, I don’t mean the clichés like, you learn what is important.  (OK, I begrudgingly admit there is some truth to that one, but I have yet to find a sustaining sense of priorities, and I totally reject the notion the important lessons are supposed to make you thankful for the crap – hey, maybe another blog topic.  I sense this digression is going to be a thing with my blog – maybe what I will need is better editing).  What I mean is, I learned how to deal with things I never dreamed of, and somewhere along the way, I realized that I now know a lot of things that might be helpful to other people.   And I like helping other people.  Usually.  And the admittedly odd but interesting range of things I have picked up along the way probably can help a lot of them, even if our stories and needs rarely overlap otherwise.

I think the one other thing to tell you before I really get going is that I am capable of being quite the hypocrite and I (usually) will be the first one to call myself out on it.   No really, I am living, breathing hypocrisy, moderated by guilt (a topic requiring its own blog post, for sure) and a dash of self-diagnosed OCD.   I think what it boils down to is the inner conflict of being the biggest rule follower in the world with an inner bad ass rebel trying to get out.   I yell like a crazy woman at anyone on four or two wheels who breaks traffic laws, but I jaywalk.   I swore that I never would say to my own kids the One Thing My Mom Always Said That Made Me Nuts –  “Because I Said So”  and within a couple of years of parenting lost count of how many times I have given that as the sole reason for, well, most anything (wait, is that hyprocrisy or just lying retroactively? I don’t know but every time I say it, I almost feel like I am watching myself from the outside in horror).   I believe in clichés like “the days are long but the years are short” and cry over horrible things happening to kids on the news and make the requisite vow never to take my own kids for granted, and five minutes later I am screaming at them for breathing too loud.   I talk about how I have learned not to sweat the small stuff, and then I cry when I can’t find my cell phone.   So, not just a hypocrite, but a hot mess.   And a self-proclaimed one (not hypocritical, I only hate self-proclaimed experts). But if you call me out on being a hypocrite when I don’t think I am being one, I will be very unhappy. See?  Hypocrite.

I may be a hypocrite, and one who digresses a lot at that,  but I tend to play well in the sandbox.  So I hope you will play – or at least read, and come back and read more.  And I do hope I can help, even if sometimes it just is to make you laugh and realize there is someone out there who can make you feel a little more normal (even if only relatively so).