The Opiate Epidemic and Those Left to Suffer

Everyone wants to talk about the opiate epidemic. I get it. It’s a big problem that is facing our nation, but another problem has hit home as a result. So many chronically ill and injured people are now facing a life that is filled with pain.

I am one of those people and for the last ten years, I’ve went without pain killers of any sort, not because I don’t hurt, but more because I don’t want to be treated like a ‘seeker.’ This is a classification that can make getting treatment and a proper diagnosis almost impossible. Instead I have dealt with more pain than I think any one person should. And I’m not alone. I wish I was, because I wouldn’t wish this on anyone.

So many people are in pain every day and there is nothing being done about it. The worst part for many people will be the fact that there is nothing on the horizon to make it better. We are focused on the number of deaths of opiate use and rightly so, but I think we need to start looking at other numbers. We need to start watching the suicide rates with the chronically ill and injured.

To help understand where I’m coming from, let me explain my pain. I have idiopathic intracranial hypertension (IIH) and a CSF Rhinorrhea leak. Long story short, my brain makes too much brain fluid and it creates a lot of pressure on my brain. I run with about twice as much pressure as is normal. Think of filling a tire too full of air, the psi gets too high in my case.

Well eventually after 8 years of high pressure, it blew a hole in my skull, releasing brain fluid through the opening and out my nose. Lot of surgeries to look forward to in the future with the knowledge that I will be left to suffer in recovery. Presently, it poses a constant risk of meningitis because of the opening in the skull and the sterile nature of CSF fluid.

Sounds fun, right?

I don’t know how to describe the pain in more than a way of feeling like your head is going to explode. Imagine the tire again…

It also comes with a host of other neurological disorders. It used to be coined as a false brain tumor because high pressure will wreak havoc on many other systems, just as it would with a growing tumor taking up space and making high pressure.

With first diagnosis in 2008, this has been a ten year journey. The diagnosis took 2 weeks because it is rare and I was classified as a seeker at some point. I went to 5 hospitals in 2 weeks. Not because I wanted pills. Hardly. I wanted to know why I felt like I was dying. I was pregnant at the time and I was concerned about more than just me.

After the way I was treated, I’ve managed to never have to go on them, but it comes at a cost. I get seen in the ER and taken seriously every time I have to go because of it, however the cost is living in chronic pain.

More recently I had my third child in the midst of it all. It was a surprise with nine years of age between my youngest at the time. My current leak and brain disease made a C-section my only choice this time.

In the hospital, 14 hours after surgery, I was left in pain for hours until the nurse showed up. She was hours off the schedule written on the board, however I was to ask for each dose. It was a new policy that was in effect, yet as a patient, I wasn’t told that it was necessary. How was I to know to ask for a dose when I was never told so? Is that not their job? Is that not the point of a schedule to begin with? And of course, I didn’t want to ask because of previous visits and treatment given with that sort of request.

Silly me, I figured that pain would be a given after being cut open and a subsequent hour and a half surgery was performed, as well as birth. I was left in pain for hours because of new opiate policies.

A year ago my husband had lithotripsy on one kidney, stented and then another surgery. He was literally left in tears on the bathroom floor. The nurses callousnous was something I will never forget. His pain was more than I’d ever seen him have and new policies in place left him to suffer.

Neither one of us have ever had opiates in our system when the mandatory drug test was given before we were even helped. We were treated liked seekers and were obviously not. In some instances, it appears that no matter what you do, you are considered a seeker.

What this epidemic means to mean is that I won’t get help when I got to the hospital feeling like I’m going to die. I’m not the type of person to be dramatic, so understand that it is real pain. It isn’t fabricated, though it is all in my head. Scans and all other diagnostic tools show that I should be in real pain. I am. But because of over-prescribing and addicts, I have to suffer.

There is no bravery in suffering. It just hurts. Every day of my life and no real hope of relief in sight. While I have too much to live for to give up, I worry about others that don’t. If I didn’t have kids to get up with and feed, take care of every day, why would I want to?

I’ve never done any sort of recreational pills and I hate even take Tylenol, but sometimes the pain is too much. What is to happen to the ones in pain, actual pain, from actual injuries and illnesses? What is the alternative to just suffering?

Suicide

Living in pain for the rest of one’s life, tends to make you start thinking about ending it sooner. It doesn’t have to do with weakness because I hear it a lot. That a suicide is somehow a weakness. For many, it isn’t because you cannot imagine the courage it takes to get up everyday in pain.

And if you can, you are stronger than you know.

Will this opiate epidemic lead to more deaths? Not by a drug that is shot into a person’s veins or a pill that a person chooses to take. No these deaths will be the fallout. It will be the epidemic that isn’t talked about. What happens to all of our chronic pain patients that are in pain through no fault of their own? Will we really let them suffer? Is that somehow better than adding another addict to the world, possibly?

And then I have to wonder what happens to those people that are treated horribly at medical facilities of all sorts. Each doctor that accuses and berates, how likely are they to go to the hospital when they are in dire need to? I know I don’t go unless I feel like I’m going to die, when the pain is more than I can handle.

I have a very high tolerance to pain- I shouldn’t have to have.

I have anxiety when it comes to anything medical- but I’m not mentally ill.

I have depression- but I’m not on medication because there is no diagnosis. I’m just in pain every day and that’s well, depressing.

I’ve thought of suicide, very seriously- but I’m not suicidal. It’s natural to want to take one’s self out of misery when nothing and no one is going to help make it better.

I hurt every day of my life- but I shouldn’t have to.

I need brain surgery- but how can I when I know from many instances, that I will be forced to suffer even more?

I’ve never done a pill that wasn’t prescribed in my life or shot up anything in my arm- but I am another face of this opiate epidemic.

I’m 33 and after a decade of dealing with it all, I’m just tired. I think all of us, those that have chronic pain are tired of dealing with the looks, the assumptions, the ‘opiate epidemic’ that has made an already hard life, even harder.

What do we do about this epidemic or life managing our pain?

Are we just supposed to suffer in silence a little while longer?