Telling the Truth: Now That’s Brave

I’m so fed up with hypocrisy and fakery and lying, Can we normalize telling the truth? And by that I mean, the actual truth.

See, a trend started awhile ago that screamed for authenticity. Everyone wanted authenticity, and transparency, and truth.

Most people were lying about wanting that.

They think they want that. It’s an excellent sound bite, but what they actually want is everyone to think their life is amazing. They have it alllll together. They’ve figured out the secret to ending bad days forever… just swipe up for more!

People want authenticity and truth if it feels good, or if it makes them look good. Truth that’s uncomfortable? Pass.

People lie a lot. Quite frankly, we’re pretty happy when people lie to us because we’d rather a feel-good lie than an uncomfortable truth.

I’ve spoken with several people recently for various reasons. More than once I was asked what it’s like living with MS. Sometimes I was asked what it was like being diagnosed with MS.

I answer honestly. Living with MS sucks. It sucks every day, there’s just varying degrees of suckage. Sometimes it sucks 10/10. Sometimes it sucks 3/10. But it never doesn’t suck to some degree.

Being diagnosed with it was one of the worst days of my life. I’ve had several really awful days in my life. If it’s not the worst day, it’s definitely in my top 5.

When I give my honest answer to what I presumed was an honest question, people are often taken aback.

Guess I’m not getting that MS spokesperson job.

But what were they expecting me to answer and why are they surprised that my truth isn’t bubbly and delightful?

I think people are taken aback at my answer because they’re expecting some beauty pageant answer, in which I talk about how it’s been challenging but I’m fine and it’s really important to stay positive and count my blessings and focus on the good things in my life.

Sure, all of that. But also, if you ask me what it’s like living with MS, I’m going to tell you the truth.

It sucks. It makes everything in life, and everything I do, at least twice as hard. Sometimes impossible. I miss who I was, the things I used to do. I miss my old life, and my old body.

It’s not a blessing in disguise, or any other cliched garbage about closed doors but open windows, and if anyone ever tells me it’s all part of ‘God’s’ plan I’ll need someone to post my bail.

I’m not going to lie about it to make other people feel better. I don’t have the energy, and I don’t have the interest.

It’s not my job to make other people feel better about my life. If the disease that I have, and the permanent disabilities it’s already caused, makes other people feel some kind of way…that’s a them problem.

I have MS and I no longer have the energy to make sure everyone else feels okay about it.

It took a lot of energy watching it destroy my entire life, and my husband’s by proxy, so I can’t be dealing with anyone else’s emotional issues about the disease we suffer from.

Have I learned some great lessons because of MS? Yup. Processing trauma is amazing for personal growth, but you know what’s even better than that?

Not having to process trauma. It’s better to not watch every hope and dream and plan you ever had blow up in your face. Better would be not losing everything you ever worked for because your life and occupation were dependent on physical abilities that you don’t have anymore and will never regain.

Would I trade all the great life lessons and personal growth I’ve achieved over the past year and a half to not have MS?

In a tachycardic heartbeat.

But that’s not an option, so acceptance is the next best thing for my mental health.

I’m not having a pity party, these are just the facts. I have neuro deficits and they’re permanent. Occasionally they’re barely noticeable, and some days I’m extremely disabled.

Funnily enough, it’s an acceptance of the facts and quitting the toxic positivity BS that have made things much easier for me on an emotional level.

If I’m having a really hard time, I’m brave enough to say that now. I’m brave enough to truly not care what other people think anymore. I’m not going to lie and say everything’s great in an effort to make sure people don’t feel bad for me. I don’t care how other people feel about my existence, period. Love me, hate me, pity me, fear me, whatever.

There were a few people who delighted in how crappy things got for me at the end of 2019. For awhile, I didn’t want to give them the satisfaction of letting them see just how crappy things were. Now I just feel sorry for them because if I was given the choice between living my life with all its challenges or being the kind of person who delights in the ruination of someone else and the end of their able-bodied existence?

I’d rather be disabled.

I’m kind of new to being disabled, so I’m certainly no expert, but I think a lot about the subconscious behaviours that come with it. Remember when I talked about getting comfortable taking up space when going grocery shopping unsupervised? I also think about how many people view health problems or disability as a moral failing or karmic punishment. Are we in a hurry to convince them it’s not that bad, because we’re desperate to believe it’s not that bad? If it’s not that bad, then we aren’t bad people who deserved our fate?

People view poverty very similarly. Everyone loves to lie to themselves that they’re much closer to becoming a Bezos or a Musk than the homeless person on the street.

The truth is, most of us are two paychecks or one catastrophic, random event away from losing everything.

Most of us walk such a fine line, it’s going to take one workplace injury or one serious illness or one breached contract, or one personal betrayal or one pandemic to ruin it all.

(Some of us like to overachieve and go for all of them in a fun game of Wreck Your Life Bingo! But you know by now I often digress…)

I used to be that person, believing that I was untouchable because I made good choices. Because I was active and ate well and saw my GP yearly for a full physical, I wasn’t going to be devastated by illness, no sir. I had quite a bit of money in savings, perfect credit, and an amazing husband. Other people with health problems? They just weren’t trying hard enough. Poor and homeless? They should make better choices, or maybe not do drugs.

I was a dick.

Now, thanks to a couple sucky people I shouldn’t have trusted, a chronic autoimmune disease, and a global pandemic, all I have left is the amazing husband and my razor-sharp wit. I’m a bit smarter, I lost all the sucky people from my life and I’m less of a dick, but the price for that has been pretty high.

One of the things I’ve realized is we like to lie to each other and ourselves. I suppose it makes us feel safer to make up stories. The homeless person made bad ‘choices’ so that will never happen to us. The disabled person didn’t take care of their health, so that’s what they get. Their life went to hell because they must have been a bad person at some point or done something wrong. That’s just karma. I’m a good person, so random bad things out of my control won’t happen to me. I’m pretty sure victim blaming is an attempt at self-reassurance.

Whatever helps us sleep at night, I guess.

I’m just over the mistruths and the fibs, whether they’re to make ourselves feel better or to make others feel better. I don’t need other people to try and make me feel better, thanks. In fact, I’d rather they didn’t because what they don’t seem to realize (and one of the many reasons toxic positivity sucks) is that feeding me platitudes is condescending and dismissive.

I’m allowed to feel my feelings and other people don’t get to try and minimize them for their own comfort.

Saying something like, ‘it’s not that bad’ or ‘it could be worse’ is infuriating. Hey, Becky? There are many days it IS that bad, and while it could be worse, it could sure be a hell of a lot better, too.

It goes both ways, though. I’ve actually had people telling me about a job loss, a curable medical diagnosis, a divorce, etc…and they’ll stop and say, “But I shouldn’t be complaining about that to YOU!”

First of all, what’s that supposed to mean? And secondly, why not? Do I have a monopoly on misery and challenges? Maybe we should just own that things suck right now for everybody.

Acknowledging when things are really hard, and being truthful about how we really feel about things, is actually less painful than constantly having to pretend that things are great or minimizing any hardship we’re currently experiencing. People are allowed to feel unhappy about their breakup or their crappy job, or their lack of a job, or the pandemic, or a bad haircut even if it’s ‘not that bad’ in the big picture. It’s not a competition of who’s got it bad enough that they’re allowed to feel bad or upset, and there isn’t a list of what’s ‘worthy’ to be upset or stressed about.

If you feel bad about something, then it’s worthy of feeling bad about for awhile. The end.

Fun fact: I’m disabled courtesy of a progressive neurological autoimmune disease. I haven’t earned an income since 2018. I don’t know if I can rebuild my business. I’m bankrupt. I’ll never be able to return to working on an ambulance. These are all hard, even devastating facts for my life, and yet I still lost my mind the other day because the PVR screwed up recording a TV show I wanted to watch. So the whole ‘putting things in perspective’ concept that, if you experience really life-changing challenges, you’ll suddenly become so grateful for what’s truly important that you’ll be impervious to the petty annoyances of daily life like telemarketers, jerk drivers, lost packages in the mail, etc…that’s another lie.

I’ve definitely learned what’s most important to me in life, and that’s been good. Am I less stressed by certain things that used to drive me nuts? Yes. Are there still days where there’s a chance I’ll be arrested if my internet goes out one more time?

Also yes.

I just want more people to be honest. Ignoring how we feel or pretending things are great when they aren’t, isn’t actually emotional intelligence. I’m also not sure it’s healthy or beneficial. Sometimes things just suck. Sometimes things are hard, or painful. Lying to myself, or other people, that everything is wonderful doesn’t actually help me feel better. I don’t think it’s just me, either. If ‘good vibes only’ and thinking only positive thoughts worked, and it was just that easy, wouldn’t we all be in a spectacular state of bliss with amazing lives completely devoid of any hardship or hard feelings?

I’m not talking about constantly whining or playing the melodramatic victim. I absolutely think that mindset is important and we shouldn’t wallow.

But sometimes we face circumstances or experiences that will change us, and our lives, forever.

If our default is to pretend that we’re totally fine every moment of every day and the thing that changes us and our lives forever isn’t that big of a deal, I think that’s a waste of energy and mental resources that we could use to either try to make things better, or if that’s not possible, learn to cope with the new normal we didn’t ask for.

It boggles my mind, how many people think they’re entitled to decide how other people are allowed to feel about their own situation. Let’s be brave and feel what we feel without worrying that it doesn’t meet the threshold of being ‘feeling worthy,’ That goes both ways. If it makes me ridiculously happy when there’s a sale on cheese, that’s how I feel about that. If it annoys me when people give me side eye when I park in a handicapped parking stall with my placard, then that’s how I feel about it. I’m allowed delirious happiness by simple things nobody else understands, and I’m allowed to be angry at simple things nobody else understands.

I’m a 41 year old woman and I spent my lifetime (and my healthy years) cramming my feelings into the roiling ball of anxiety in my tummy. Too much of a chicken sh*t to feel the hard feelings, or to acknowledge when things were awful. I definitely couldn’t bear the though of anyone else feeling bad because of something going on with me. I spent a lot of time downplaying happiness, whether because it was a ‘stupid’ thing to be happy about or I didn’t want to rub it in anyone’s face that I was really happy.

Now? I’ve given myself permission to feel allll my feelings when I feel them. Those who don’t like it are free to find the closest exit. Don’t ask me questions unless you want my true answer because that’s what you’re going to get, whether it makes you uncomfortable or not. If you’re looking for a calm, placid, enlightened disabled chick…

I’m not her.

Lots of days, I’m okay emotionally. This is just life now, there’s nothing I can do about it, and yes it could be worse. Other days, I’m mad as hell about my current circumstances because I can’t find a lot of personal responsibility in it. It seems that I’ve just enjoyed some really random shitty circumstances, so that’s sometimes a little hard to process.

It’s almost like humans with chronic diseases or disabilities…are still humans like everyone else. Sometimes we have good days. Sometimes we have bad days. There are times when life is pretty good, and other times life sucks. It’s the human experience, for all of us, and I think it’s better if we can just stop lying about it.

Maybe there are disabled folks who are legitimately, truthfully always happy and positive. If they do exist, I’m not one of them. If you ask me a question, I’m going to give you my answer. I’m going to feel all my feels. I’m also coming to realize that there’s more to me than my disabilities or my diagnosis, so I reject the idea that I’m required to be upbeat and bubbly about it because it makes other people uncomfortable.

There are so many ways I can make people feel uncomfortable, I refuse to be limited by my disabilities 😉 Apparently being honest will do it, too.