If normal isn’t real, how do I find a new one?

Welcome to Cheese and Whine- the part of the blog where I eat charcuterie and bitch about things

Today’s menu is left-over, chilled, and thinly sliced pork loin that was roasted after being seasoned with salt, ground fennel and Pork Stank. This has been paired with a robust, aged Manchego on a crusty Pumpernickel bruschetta. Our ultimate adult lunchable is rounded out with a topping of homemade strawberry-basil balsamic jam. I find this pairing best accompanies the frustration generated by no one around you being able to understand your life or even trying.

Today this angst is brewing in me with the lack of empathy inherent in the trite sayings we foist on the disabled- including my least favorite two-word combo in the English language… “New Normal”. Some of these really do come from a place of good intention, I get that, but seriously people?

Let’s talk about this

Since we are all new here, I should probably give some background as to my unique perspective regarding the many, sometimes well-meaning, always off-base platitudes that the general public seem obligated to say. From disconnected (read: fucking wrong) advice to questioning your actual sickness to comparisons to their grandson’s best friend’s dad’s dog’s previous owner’s aunt, I have heard it all.

Summer of 2024 will mark 15 years that I have been diagnosed with Myasthenia Gravis (MG). Along the way I have picked up a few other tertiary diagnoses, because once you have one autoimmune disease you are at higher risk for them all, but MG… MG was the life changer. Despite the Google’s adamant assurance that most people with MG can lead a “normal” life, I have found that to be false. Side note: Google doesn’t understand “normal” either- but we’ll get there.

Now don’t get me wrong, for MG there is the possibility of the mystical state of remission where it’s not truly gone but you have no symptoms, but few hit it. Thanks to the miracle of the interwebs, I have connected with thousands of other MG warriors and the fact is, most of us never have and never will see remission.

It’s a hard moment when you fully internalize the fact that your disease is incurable.

Roughly defined, MG is a semi-rare, chronic autoimmune disorder in which antibodies destroy the communication between nerves and muscle, resulting in weakness of the skeletal muscles. This disease, which can hit about 1 in every 100k people, can effect all voluntary muscles, but most commonly the muscles of the eyes, mouth, throat and limbs. The 2 types of MG- as far as groupings go- are ocular MG which effects only the eyes and generalized MG that effects everything else. Fun fact: You can have both. Of course there are more finely defined groups, stages, active-antibody divisions but that’s a lot that I learned to ignore years ago.

MG is actually more common in men than women, but the majority of men don’t present symptoms until their 60’s where as most women begin to show in their 30’s. You can also be “seronegative” which means you have MG but they don’t actually know what antibodies to test for (only 2 are known) but they know you have MG because of your reaction to an EMG test (small shocks of electricity are zapped into your muscle groups to see how they hold up) and how you react to meds.

I’d keep going into the scientific stuff but it’s a lot. Suffice to say, I had to be diagnosed by electric shock, at 21 years old, I have both types, and any repetitive movement makes me go paralyzed. Further drawing the short-stick, I get treated with chemo meds because apparently the only thing tough enough to kick my ass is me.

This shit is hard.

MG affects everyone differently as well, so much so that it is nicknamed the snowflake disease. This makes it a hard to pin-point, difficult to treat beast that rips who you were to shreds and leaves you in mourning, stuck inside the shell of yourself that remains.

Enter the Do-Gooders

As humans, we seem to be wired to want to share our opinion, even when it’s not wanted. Hell, I’m sitting here writing a blog. I really think that most people are genuine, be it in their concern, want to help, or curiosity. Most of the time, even misguided notions of support or aide come from a good heart. It’s no different than me hoping this little bitch-fest will spread understanding so those healthy people out there can learn to channel some true empathy and think before they speak.

However, the advice or questions are often callous, sometimes even cruel. Sometimes people don’t realize how it comes across. And I have talked a lot about MG here because that’s my experience and what I know, but any one suffering chronic illness, especially invisible illness, will be able to relate to a lot of this list.

So here it goes: Six of my all-time, least-favorite things people have told me when they find out I am sick.

Are you sure it’s not stress?

This question may not always use the word stress. Both hormones and anxiety are equally interchangeable where this question is involved. You’d think this would only be the annoying doctor that doesn’t believe you when you are trying to get diagnosed right?

Wrong.

Especially when you have a highly symptomatic disease where your condition can literally change by the hour with shifting barometric pressures, this question comes up a lot. Worse than you were yesterday? Must be your period. Worse than you were an hour ago? Something must have happened to stress you out. No Karen, a butterfly beat it’s wings and set off a monsoon in Mongolia so here we are.

My experience with this set of key words is already terrible but fellow people I know who struggle with chronic illness and have a diagnosis for depression or anxiety have it even worse. I get asked if I’m sure its not that. They have to actively prove it to doctors and layman alike just so that their symptom -EVEN IF THEY ALREADY HAVE A DIAGNOSIS FOR A CHRONIC ILLNESS- can’t be written off as a headcase.

Long story short- I keep as stress free of a life as I can and it doesn’t change the fact that an hour ago I could smile and now I can’t because I was watching TV too hard. I’m still sick, I am actually sick, and this is just how it is.

But you don’t look sick

This phrase is a double edge sword so lets go through both.

Option 1 (sadly the most common): You’re just an asshole.

Picture this, you’ve been in bed for days, unable to move. You can’t play with your kids and you’ve had to watch a 4 year old put on a brave smile and go play with her uncle even though she’s worried about her mom because you can’t even sit up without help. Now, you finally have a good day. You can walk, you can go out… so you take that sweet girl to go buy a new dress for her doll and get ice cream after. You park in the handicap spot, hang your little tag, and have a good time only to come out to a note on your windshield.

“Don’t know how you got that tag but you don’t look sick. These spots are for people who need it!!”

First off, I don’t owe anyone an explanation as to why I need the accommodations I do. It’s not their business. But secondly… where the fuck is their empathy? I blame the internet for the rising tide of people thinking they can say whatever they want as long as people don’t know who they are. Needless to say, that was a mood killer.

Option 2: They mean it as a complement.

Look, I get it. People hear “sick” and think of that bad flu they got last November where they dropped 7 pounds, didn’t change out of pj’s for 4 days, and had circles around their eyes that would have made a raccoon jealous and I don’t look like that. Or they think of grandma fresh out of the hospital all pale and veiny and leaning heavily on her cane and I don’t look like that either.

People don’t expect sick people to look awake and alert. They don’t expect them to actually be in the range of needing to drop a couple pounds or to dress something-resembling-trendy. They don’t expect my vibrant blue hair or a 35 year old with literally no wrinkles. (At least facial paralysis was good for something!) Unless I am fresh out of the hospital or having a string of bad enough days that I have to be on my walker, I don’t look conventionally sick.

But I am.

I appreciate the compliment, but here is why it falls flat. Often these same people that say this forget you are sick because you just “look so good” but then they get frustrated when you can’t do what you look like you can do. It also furthers the narrative that you aren’t “sick enough”. Not too sick to hold a job, so why are you too sick to hang out? Not too sick to cook dinner, so why didn’t you clean up too? Not to sick to look good, so are you really even sick?

I recommend reading about the Spoon Theory by Christine Miserando. The “spoons” it took to do one, means I can’t do the other, and no amount of looking healthy will ever mean that I am. Please don’t cheapen my experience down because of the fact that I did actually invest in a great pair of flare leggings and like to get my hair done.

If you would just exercise/diet

I will preface this by saying that I am not knocking having a healthy diet and exercise. They are good things, loads of health benefits, blah blah blah. And there are certain dietary restrictions that can be put in place to help symptoms of gastrointestinal diseases like Crohn’s and side effects for meds. For example, a medication that I have to take every 6 hours is bound with lactose- and I like dairy. If I don’t want my meds to eviscerate my intestines and chain me to a toilet, I need to really keep low on my dairy intake to not overload on lactose.

HOWEVER… no.

This tidbit of advice is always given like its some great key to perpetual good health and fixing what ails you and it’s not. No amount of kale and kombucha is going to detox away my disease. No amount of exercise will fix my muscles. For the love of GOD, it makes me go paralyzed! Unless you want to carry me out of the gym like a limp salami, the stationary bike will not help. My neuromuscular disease has zero to do with the strength of the muscles. It’s my brain saying “move” and the nerves noping out of that situation.

I understand why so many people give this advice, besides the overall health benefits of motion and eating well, even if they don’t, and some of you healthy people reading this wont like it.

You’re scared.

We have diseases that are scary. Their effect on our lives is frightening. The fact that there is no cure makes it even worse. But the scariest part of all is that very few of us know how we got it. It’s nature’s cursed roulette and that is what is truly terrifying. So, you do as humans do and try to rationalize. “She doesn’t work out so her muscles failed.” “That diet! No wonder he has a thyroid issue.” “If they would just get out more and do something healthy they would feel better!”

By suggesting a healthy habit as a cure, and our not doing them- or not keeping to them enough- is a cause, it means that we caused our problem. Logic would then state that you adhering to these healthy lifestyle choices means you are not at risk. Maybe you’ve never even thought about it that deeply. Search your heart though for some empathy and realize its not advice you’re giving, it’s your fear talking. But neither you, nor I, can juice cleanse our way out of this one.

But just to stir up that cognitive dissonance you may be feeling a little more because that’s the kind of mood I’m in: I had multiple black belts, could run miles, and once hiked 14 miles in a single day carrying a canoe on my shoulders before I got sick. Exercise can’t prevent everything.

Try this essential oil

I am not a woo-woo, hippy-dippy-trippy, esoteric kind of person. I am always open to trying new things and giving stuff a shot. But these people- these “Try this, it worked for so and so and they are off all their horrible chemical-ly medications now” people deserve to burn in hell. Seriously, fuck you.

And I could easily switch out essential oils for any number of snake-oils people hawk to the desperate and dying, it’s just the one I have heard the most. From super oils to healing teas to sound therapy and healing retreats in nature and even the Joel Olsteen-ish “make God fulfil his promise” churches- fuck all of you.

And maybe I’m coming across as harsh so let me clarify. I have no problem with essential oils themselves. Some of them smell really pretty. Lemon or citrus in my bath water makes me feel mentally rejuvenated. I don’t do the whole metaphysical crystal thing, but I know people who spend hours arranging them and learning so they can focus on positive thoughts more effectively to keep them from being overwhelmed by the constant pain, fatigue, etc. that chronic sufferers go through and I am all here for the power of positive thought.

No, my fuck you is reserved for those people who barge forward like they know better, thanks to their 20 minutes on Google, than all doctors and yourself. They propose it like it’s a cure to people desperate enough to stop their meds and buy it. Come around year 2 or 3 when I was told my remission window had basically turned to nothing after I passed one year and I was rapidly getting worse, I was desperate enough to try anything. So I did.

And then was told it wasn’t working because I wasn’t going at it whole hearted. I clearly still doubted since I was still “leaning on big pharma” by taking my meds. So I stopped.

That was the day that I found out I can only go 18 hours without my medications. That was how long it took for the walls of my lungs to get too weak to keep expanding and I almost suffocated to death and had a crisis so bad I lost full range of motion in my face to this day.

And you may be thinking, “How could you even listen to them?” You try being 22 and being told that your body is basically dying around you. What would you do to get rid of it? People who propose a miracle cure for the incurable, peddle it to the sick, and blame them when it fails are predators. And every good predator knows how to pick it’s prey.

But even those who may just be regurgitating some bullshit they heard from their friend trapped in a Scentsy pyramid can still sow seeds that can grow into being duped into something dangerous later. Look at the autism/vaccine issue. One article in the ‘90’s that was utterly disproven in which the scientist was paid off to falsify data and literally lost his medical license and all ability to publish in the future and people still fell back on that argument when the Covid shot came out.

TLDR: You’re not an expert, don’t pretend to be one. Fuck all the way off.

At least it’s not cancer

This is probably the most divisive of all my least favorite phrases, and I found out first-hand that people do not appreciate the response of “I kinda wish it was.” They caught me on a bad day, ok?

To clarify, my disdain for this phrase has literally nothing to do with thinking that cancer patients have it easier. They don’t. I, like every single person I know, knows someone who has battled or is currently fighting cancer. Just like you, I also know people who have lost the battle. I loved them dearly. I respect their struggle.

But when you, trying to make me feel better about my shit diagnosis, classify it as less than cancer, you are not respecting mine.

I may not have lost my hair, but I have sat there and felt the burn of 6 hour infusions. I have had my appetite ripped from me by medications. I have left hospitals black and blue and green up to my elbows from countless shots and IV’s blowing out my veins. I have so much scar tissue in my arms, they can’t even hope to land a stick in my left one anymore. I, too, have scars from ports and have spent months bed-ridden as you slowly stagnate in your head until you can’t think of anything except if this is the day the disease will finally kill you, because you know in your bones that is what’s going to happen one day.

All warriors against chronic disease have this. All of them.

Just like all cancer patients.

Our disease isn’t less. It’s just not as plainly visible.

But here is why I once responded that I wished it was cancer, and no- I don’t give a crap about your side eye. Cancer has an end date. I have never met someone or heard of anyone that has been fighting cancer non-stop for 10… 15… 25 years. Maybe it’s a good end and you hit remission. Maybe it’s not. That’s terrifying, but its an end. And at around year 10, when your disease that was coming under control decides to go off the deep end and all of a sudden you are back in the hospital every month and the small bit of routine you had begun to be able to do is snatched from you again… you are ready for whatever form “end” will take.

But it wont.

I understand people think they are proposing something worse to make us feel better, but it’s not. It’s just making us stay silent in our own personal hell because we don’t dare to speak out against a disease that’s just as bad but a whole lot more respected.

You just need to find your “new normal”

Normal. In the wise words of Inigo Montoya, “You keep using that word. I do not think it means what you think it means.” And that’s because it doesn’t. Normal is relative to each person- what is normal the spider is chaos to the fly, so to speak. I have found it best summed up in this anaymous quote:

“Normal is a word in and of itself that has no place in modern diction or terminology.”

Normal isn’t real.

What doctor’s and people and even Google mean in this cop-out of a comfort tool used to instill empty hope is “stereotypical”. The life of being able to move and not plan everyday like you’re operating on borrowed time, to act spontaneously, to perform daily tasks and have energy and ability is stereotypical. This is the normal they refer to and in telling you that you need to find your “new normal” just reinforces that you will never, ever get it back.

Especially to someone who is recently diagnosed, the stereotypical normal is all they have known. It’s never just moving into some new routine that magically makes it all better and you feel whole. It’s not some Pinocchio tale where we manifest some different way of doing things and wake up smiling and singing “I’m a real boy!” But we sure as hell fucking try.

Because this world wasn’t made for the disabled. Simple tasks are no longer simple. Growing up I was in charge of dusting and vacuuming our house every week. Now, I’m lucky to be able to get my hands past my shoulders and don’t do well (unsurprisingly) with pushing heavy cleaning implements that suction themselves to the floor. I will never be able to stereotypically clean my house. Are there other ways around this that would be defined as “new normal”- technically yes if you mean that someone else has to do it.

But here is why this phrase is cruel more then encouraging. Getting a chronic disease is a death of who you were. And just like coming to terms with a loss, we go through the same stages of mourning for ourselves. I died the first day I began showing symptoms, I just didn’t know that the old me was gone yet. But because diagnosis can take so long and the disease never really ends and can be so symptomatic, the steps of grief seem to lead in a circle. What you clung to as normal, or settled into as new normal can be, and often is, fleeting. You can’t reach a goal when the goal posts are always moving.

By defining a state of livable routine as “new normal” when our only definition of normal is a stereotypical life that can never be attained, you only make us more hopeless. It makes us feel like we aren’t doing enough to reach the stereotypical norms that you take for granted and highlights our loss all the more acutely.

I am no longer normal. Stop saying that I will be if I just redefine into a new normal. It doesn’t exist.

Have I found routines that help guarantee a smoother day? Sure. But yesterday’s normal was making a giant pot of gumbo for Mardi Gras and packaging it into containers for my coworkers for lunch and today’s normal was my husband having to help me stand up from the couch because apparently I overexerted myself sitting. There is no normal to even build a new one off of.

So what am I supposed to say?

Feel like I stole all your fun phrases?

Good.

So what does that leave you with saying? How about something heartfelt. This is where empathy comes in.

Most of these above phrases are born of sympathy- you have pity for the person, hence trying to say something, anything even if you don’t know what to say. Empathy, on the flip side, is born of compassion. It’s putting yourselves in the other person’s shoes. What would you want said to you?

Here’s a few things to keep in mind. If it’s advice, we’ve heard it. If it’s a comparison, we don’t need it. If it questions the validity of our diagnosis or feelings, just go away. If it is something that would make you feel like someone clearly doesn’t understand and isn’t trying to, choose silence.

Try asking someone what it feels like to be them. Ask them if they need help regardless of how able they look. Tell them simply that you are there for them.

I have noticed that most of my exchanges with disabled friends don’t involve trite questions that we already know the answer to. How are you feeling? Like crap like me. Duh. Are you ok? Not really, I’m making it. We ask each other “How are you holding up?” We already know they are fighting everyday just to be there, but we want to know how they are mentally. How they are as people. Don’t treat us as broken things that need to be fixed, just as people. Be empathetic.

The cheese is gone and I’m going to pay for that later but that’s okay because I am calm now and, hopefully, somebody learned something. Go out and be kind people.