Showing posts with label Chronic Pain. Show all posts
Showing posts with label Chronic Pain. Show all posts

Thursday, September 21, 2017

Too Rich To Be Sick, Or Too Cruel To Be Kind?

There is so much going on in our world today that is simply heartbreaking.  The things that are happening are beyond words.  But one area of my life where I refuse to be silent is where my healthcare is concerned.  And right now, a bunch of rich, white men are trying to take my – and your – healthcare away.  And as far as I can tell, the only real reason why they are doing that is because they can.  

The last time I checked, no one – rich or poor – has emptied their pockets to pay for my healthcare.  The only one who has been bled dry physically, emotionally, or financially, is me.

So please, stop putting forth this argument because it is convincing those in power, whether they should be or not, that healthcare is a commodity, that it will be bought and sold to the person that can pay the highest price.  Except the highest price isn't monetary.  It's life.  And death.  

It's a zero sum game.  Because the rich will win again.  They can buy their way out of almost anything.  I worry now more than ever that what I thought was the most difficult fight of my life, the daily battle of living with chronic illness, didn’t start almost 10 years ago.  It’s starting right now.  It’s starting with convincing those in power that my life is worth living.  That even though I am sick, often in pain, and may have more medical expenses than my “normal,” healthy 32 year old counterparts, my life is valuable nonetheless.  

Let me explain how my life works at the moment.  I take no less than seven pills a day.  On most days, that allows me to function; to wake up, eat breakfast, sometimes take a shower, drive myself to work, work an eight hour day, drive myself home, and make dinner for my boyfriend and I.  But do you know how tenuous that is?  I don’t even have a day grace period.  If I forget to take my medication or run out of my medication, I have one day before I will feel like I got hit by a truck and will barely be able to get out of bed.  Sure, my illnesses are managed, but only by medication and a crack team of doctors.  And because I can afford all that.  Because the moment I can’t, almost 10 years of hard work will have gone completely down the drain.  I will have gone from living life despite illness, to not living at all.  

I didn’t ask for this.  I didn’t ask to part with a large portion of the money I make to go towards medical expenses.  I didn’t ask to literally use all 10 days of my paid time off every year to go to doctor’s appointment after doctor’s appointment, only to take unpaid leave for all the rest.  It’s insulting to suggest that somehow I benefit, or somehow others lose out, because of my healthcare needs.

Then you have rich white boys who think that they can go from rock and roll to politics and they further arguments such as this one – that their pockets are being made thinner because I am sick and they are not.  Someone in my home state of Michigan is vying for a senate seat and this is an argument that they are furthering. That some people are sick and everyone shouldn’t have to pay for it. But isn’t that the whole concept of insurance? You pay into because some day you might need it? 

So basically you’re too rich to be sick? I guess it’s more the case that if you get sick you can afford to pay out of pocket. I can’t. Read my lips: without medication, I...WILL...DIE.  And when that happens, I assume no over-privileged white guy is going to pay for the funeral. 

I think it’s important, though, to acknowledge that there are people out there, celebrities, who are bringing awareness to chronic illness and chronic pain.  However, they have money, too.  When one cancelled her tour,  she was able to do that because she can afford to take time off.  When another got a kidney transplant,  she didn’t have to worry about taking time off for it, or not being able to afford the surgery or the anti-rejection drugs she will need to take for the rest of her life – even if she someday finds herself without insurance.  So when the U.S. Pain Foundation applauds these folks, and states that they prove that “Pain is an Equalizer,”  I call bullshit.  It’s true that just because you’re rich, doesn’t mean that you are immune to pain or illness.  But you certainly don’t deal with it in the same way that someone who has to decide whether to take care of their health or pay their rent does.  They can take the time they need to recover.  Most of the chronically ill people I know cannot.  And that needs to be acknowledged.  

I feel that the current healthcare debate has drawn a line in the sand and made it more apparent who the “haves” and “have nots” are.  And with that comes a profound feeling of being left in dust, of being hung out to dry.  And that no one beyond those in my inner circle care about what happens to me.  That not even my own government cares.  And why should those who will never have to want for anything care?           

What these people fail to realize, is that with this impending decision, we all pay a price.  For me and my chronic peeps, not being able to afford the care we need will mean we are less productive and less able to do the things we want and love to do.  In a lot of cases, it might even mean that we die.  Not having our contributions will diminish us all.  But the rich people that want to turn their backs on the rest of us, a small part of them will die, too, because deep down, they know what they are doing is wrong.  And they simply don’t care.    

What happened to our humanity?  What happened to empathy and compassion?  What happened to helping each other out, out of the goodness of our hearts?  The money you have doesn’t make you a good person.  It’s how you treat others.  It profoundly saddens me that this is what our country has come to.  And I hope that for all of our sakes, we win this fight.  Because if we don’t, we all stand to lose, some of us more than others.  

Wednesday, September 2, 2015

“I Feel Your Pain”: Four Words That Anyone Living With Chronic Illness Or Chronic Pain Would Like To Hear

A lot of us hope to receive compassion and understanding from those we are closest to.  However, most of us feel like we would never want our loved ones to get sick, and that’s the only way they would understand. 

But at some point, they will experience pain, too, even if it is just acute pain.  And it’s how they experience that pain that is really critical to those of us who deal with chronic illness and chronic pain on a daily basis. 

Recently, my BF had back pain.  He was laid up with an ice pack and it hurt him to move.  I tried to be supportive to him because he’s supportive to me when I’m in pain.

But this was more than that. 

He said, I don’t know how you do it all the time.  I knew where this was going, but I wanted to hear him say it.  Being in pain.

For him, one day of intense pain was enough to basically make his life miserable.  So multiply that by 24-7-365 and you’re looking at my life in a nutshell for the past eight years. 

Now you have to understand, my BF and I have been dating for three and a half years.  And we have pretty much spent every day together since we met. 

And maybe that’s what it takes.  Not just spending all that time together, because there are plenty of people that do that and still don’t have any understanding of what their loved one is going through, but to really be open and honest with each other.  

My BF is one of the only people that I am really open with about when I am in pain and where, because most other people just don’t want to hear it or just don’t care.    

Recently, it’s come to my attention that some people have viewed my behavior as aloof and standoffish.  But when you’re in pain all the time, it’s hard to be happy and cheerful.  I do the best I can to put on a brave face, but it might not come across that way.  And even if it does, I really have no other choice but to live with and through the pain.  Otherwise I would never get out of bed or be able to do anything.  But I get up in the morning, for the most part, and get myself to where I need to be.  And to me, that’s enough.  But for some people, that’s not enough.  But if they haven’t experienced pain, or they’ve never extrapolated their pain experience onto someone who lives in pain, they aren’t going to get it, and they aren’t going to understand that sometimes doing the best you can is really all you can do.   

And until you’re not in pain anymore, you don’t realize the negative impact that near-constant pain can have on your life.  It wasn’t until I got a very successful cortisone shot in my hip, in March that, not only myself, but others around me, noticed a distinct difference in me.  People told me I seemed lighter and happier.  And I am.   

Because pain is a drain on our bodies and our brains.  It takes everything you have to work through it.  And sometimes, no matter how hard you try, you just can’t.  And that’s okay.  There’s a time and a place for that. 

While my BF didn’t directly say I feel your pain, by saying that he didn’t know how I dealt with pain on a daily basis based on his experience of one day of significant pain, made me feel that progress had been made.  That maybe he’s one step closer to getting it than almost anyone else in my life. 

And it’s important to have that with the person you spend the majority of your time with.  It takes time.  And not all people know how to be empathetic.  Some people will never get there.    

Being in pain is more than a number on an arbitrary pain scale.  It’s about living life to the best of your ability in spite of being in pain.  Whether that happens gracefully or not, I don’t think matters.  What matters is when someone in your life, even if only for a day, gets a glimpse into what you are going through.

Friday, December 5, 2014

Check Me Out In The Latest Edition Of Women's Health Magazine

I'm quoted in this month's issue of Women's Health Magazine, in an article on chronic pain.  You gotta love when, in writing, someone says your "feelings are backed by science."

On newsstands now...