Painkillers: Breaking the Stigma

Painkillers: Breaking the Stigma

Let’s talk about painkillers.  I’m sure you’ve seen similar sentences before, followed by a lecture about the dangers of narcotics.  That’s not what I’m here to talk about.  Anytime anyone talks about narcotics or opioids today, it’s all about the evils of the drugs.  I understand why this happens.  They are abused a lot, they are dangerous, they can ruin your life or even end it.  That isn’t ALL they do.  This December, I will be finishing my bachelor’s degree.  Last year, I went to my sister’s wedding and I danced, and I didn’t spend the following day in bed, or next to a toilet puking because the pain was so unbearable.  I maintain a fairly clean house and a job.  All if this is because of narcotics.  When taken properly and carefully, prescribed by a good doctor with a fair deal of monitoring, these drugs are changing some of our lives for the better.  There are a lot of people out there taking opioid medication for pain, and they do come with negative side effects, but if they help enough to increase our quality of life even WITH the side effects, and all other options have been exhausted, then most pain management specialists will determine them worth taking. 

With this decision comes a lot of harsh judgement, though.  People hear so much of the negative and basically zero of the positive, so when they find out you take serious painkillers, they immediately start making assumptions.  I’ve heard people say they would be uncomfortable with someone taking those medications being around their children.  I’ve also nannied in the past, and have always been straight forward about my situation, and there have never been any issues.  I function on painkillers like you function without them.  If anything, people who know me and have seen me with and without them would probably feel more comfortable with me TAKING them and watching their kids.  It’s really hard to keep a clear head when your consumed with pain.  You can’t move very quickly, which I’ve learned is actually a pretty important skill in watching multiple little ones, and it’s hard to pick them up.  Another assumption people make is that everyone who takes them regularly is an addict.  That’s not how it works.  This is where being careful and having a good doctor comes in.  Those of us who do take them regularly, and properly, usually worry about this a lot, actually.  I recently tried a new doctor in an attempt to save money, and he looked at my medical history, saw that I have been taking narcotics for pain, and immediately decided I was an addict and needed counseling.  I’ve been to many doctors due to moving, and I have heard of people experiencing this, but until that day, I had not experienced it myself.  I’ve been in pain for a decade and a half that has gradually gotten worse throughout the years. I was hardly able to do anything a few years ago and it was terrifying, I had tried everything except for serious pain medication.  I had been avoiding it because it is scary, it does come with a stigma attached and I didn’t want to be a drug addict.  I had a doctor explain to me that it might be my best option, we would be careful and pay close attention to everything, no secrets, just give it a try.  It changed everything.  Every doctor I’ve been to since then has examined me themselves, looked at my history and everything I’ve tried, and determined that yes, that is in fact my best option until something better is discovered.  This new doctor was a terrible doctor in very many ways, but the way he treated me because I take narcotics was the most horrible thing.  I cried all the way home.  I’m still crying, and that was a month ago.  I went back to my previous doctor after that, who was also shocked and horrified that I had been treated that way.  That is a very ignorant way of thinking, especially for a doctor.  I’ve told everyone about all of the other reasons he was a terrible doctor (like telling me that all of my pain, which is worst in my knees and ankles, is actually being caused by neck degeneration which requires expensive injections?) but I kept this part quiet, because I’m scared that people will find out and start thinking that I am just another drug addict, lying about pain to get drugs.  I wasn’t lying when I was twelve years old and had to end my dance career.  I wasn’t lying all the times I had to sit out fun events because of the pain growing up, without decent medication because I was too young.  I’m not lying now.  I’d rather be living a normal, physically active life than taking painkillers to live a normal-ish life, mostly sitting down.

What I’m trying to say is that opioids, when taken carefully and properly, as prescribed by a good doctor, can be a good thing.  When abused, they can kill you.  If you aren’t careful and mindful, you can become addicted and end up in serious trouble.  They are also bettering peoples’ lives.  They aren’t only bad.  They aren’t only addictive.  They aren’t only dangerous.  When you find out someone takes them, don’t start judging them, or throwing out facts about how bad and dangerous they are to them.  They most likely know.  If you know they are abusing them, or getting them illegally, or you knew them before they took the medication and there is definitely something wrong now, you should say something, absolutely, but just being on pain medication does not mean someone needs a lecture or your judgement.  Break the stigma.

Chronic Pain: Am I Doing Enough? (And Why Don't I Qualify For Disability?)

 Hello, Victorya here.  I’ve had fibromyalgia since 2001.  I am 27 years old now, and 2017 has been a pretty rough year.  Job issues, insurance issues, I had found a medication that works for the first time in my life a couple of years ago but cannot afford it this year.  This also happens to be my senior year in college, so I was really counting on being fully functional, but I’ve come too far to quit now.

Chronic pain effects your life in many ways. 

When it starts plays a very big role in how it changes your life.  I was a child, I had to eventually quit dance, and going to school got considerably harder over time.  But I was young.  With youth comes resilience.  I adjusted, I managed, I learned how to live with it.  I didn’t have bills to pay, I didn’t have children to care for.  By the time I DID have bills to pay, I no longer knew life without pain.  I was used to being this way.  When you are an adult with an adult job and adult responsibilities and the pain becomes significant, whether gradually or suddenly, it is much more disruptive to your lifestyle.  Quitting dance for a child who had always danced and had never even considered other options in life seems rather disruptive, but there was still food on the table, a roof over my head, and people loving, supporting, and believing me.  It is quite different for adults.  First of all, there are all of the doctors appointments.  For about two years, I think I had a new appointment every month at least, trying to get answers and find a way to fix it.  That’s a lot of time off of work right there, and working is harder with all of the pain of course, so a lot of people end up taking a leave of absence to just go to all of the doctors appointments at once to figure it out and get back to work.  When the answer comes, and it says “this is your life now”, it is pretty shocking news.  It is hard to accept that you are just going to be in pain forever, especially when the pain isn’t just in one place.  So then you have to learn how to work like that, if you can.  It depends on your job, really.  Even a nice office job with a big, comfy chair is going to be difficult with all of this new pain.  The pain tends to disrupt sleep, too, so now you’re exhausted, and in pain, and trying to work 9-5 to keep food on the table and a roof over your head and pay off all of these doctors who, in the end, basically just said “deal with it.”  You also have to keep your laundry and dishes clean.  You have to keep food in the house, and you soon learn that grocery shopping is a pretty big task itself, with all of the walking and reaching and temperature changes throughout the stores. 

There is also the emotional toll that chronic pain takes on all of us.  We try to stay positive, but there are so many things eating away at us all the time.  Humans hate uncertainty.  We hate not knowing what the weather will be like tomorrow, we hate not knowing whether or not that person is going to call us back about the promotion, we hate not knowing whether or not our favorite character ACTUALLY died in that cliff hanger season finale, so it stands to reason that not knowing what our pain will be like tomorrow weighs pretty heavily on our minds.  Some days are worse than others, and it’s hard to make plans when you can’t be sure if you’ll feel up to it.  This can lead to social isolation, which of course can cause depression.  Sometimes, just the pain itself can cause depression.  Being in pain all the time tends to do that to people, as does not getting adequate sleep at night.  The struggle of wondering how long you can keep it up, working 40 hours a week and maintaining yourself and your home, gets pretty difficult after a while, too.  There is also the matter of people believing and supporting you.  Nobody expects a happy, healthy, athletic child to suddenly start lying about pain, or imagining pains that don’t really exist.  This is different for adults.  When an adult suddenly starts needing to take time off of work for doctors appointments, and because they are in too much pain to work, not following some sort of accident, there is a lot of “Why would this start now? You are just trying to get out of being an adult” and “It’s probably just stress, you need therapy.”  Even following an accident sometimes, after a few months, people start telling adults to “suck it up” and get back to work.  “Everyone has struggles, get over it.”  That is not necessarily healthy advice.

Individual differences are very important to remember.

            Most of us know at least four people, right?  They are all different.  They handle stress differently, some are positive, some are negative, some are pretty indifferent to everything, and if we all go through an experience together, we all handle it differently.  Maybe we lose someone that we all cared about.  One of us seems the same as always, one of us keeps talking about it being “part of a plan”, or how they are just glad that the person is no longer in pain or something.  One of us can’t even speak because they are so upset, but everyone loved that person the same.  People just handle things differently.  Is it a difference in chemicals and physiological makeup of our brains?  Is it a difference in how we were raised?  It is probably a little bit of everything.  Either way, this is just as applicable to chronic pain.  For the sake of this making sense and being easier to understand, we are going to assume everyone I’m talking about with chronic pain is around an average of a 6 on the pain scale, and they all developed the pain in early adulthood.  Eleanor has always been a bright and positive person.  When her pain started, she stayed that way, going from doctor to doctor, but over time her medical funds were exhausted, and she still had no “cure.”  Eleanor doesn’t get depressed, but she does decide to give up.  She cannot afford to deal with it anymore, she cannot do any of the things she wanted with her life, and she does not understand why this would happen to someone like her.  Her health insurance is only willing to help her on so much, so when it comes time to start trying all of the medications, some of them are just too expensive.  Now she is in pain all the time, and when applying for government disability checks, she fills it all out under the firm belief that she can no longer work, go to school, do leisurely activities, or leave the house unless she knows that they have motorized shopping carts where she is going.  Eleanor is approved for government assistance.  Linda has always been a pretty neutral person.  Nothing ever really seemed to make Linda feel incredibly sad or strongly overjoyed.  Linda has a good job with fantastic health insurance, and they allow her some time off when the pain starts to try and figure it out.  Upon finding out that it is chronic and lifelong, she goes through the process of trying every medication that might possibly work.  While doing this, she continues to work, but notices she is not able to work as many hours as she used to.  She applies for disability, but because she feels that she can still work some, is denied.  This is exactly why some people with the exact same conditions, in the same amount of pain for the same amount of time, manage to get disability, while others do not.  This is why we are all stuck wondering, all the time:

Am I doing enough?  Am I doing too much?

            My average pain level is a 7 without my medication.  With the meds, it’s a 4.  That is life altering, right?  But when I no longer had my medication, I didn’t stop everything I was doing.  I couldn’t.  Currently, I have two part-time jobs, I’m a full-time senior at UNT, I’m part of a research lab team at school, and I somehow accidentally ended up in a class where I have to do volunteer work with disabled people.  I feel like taking care of myself every day should count, but apparently not.  I cannot afford to quit either of my jobs.  When I finish my bachelors, I will be qualified for some better jobs, so I can’t really quit school either, or I will just stay stuck in this loop.  If I ever want to get into grad school, which would make it easier for me to get an even better job so I do want that, then I need this research team crap.  I have been barely getting through each day this year.  I keep getting really behind on house work, and home work.  It’s a lot to do, especially when I haven’t had many nights of quality sleep because of the pain.  Here is the thing, though.  There are people in as much pain as I am, there are people with more debilitating conditions than mine, and they are doing more.  Maybe not even more, but they are doing the same amount as I am and doing it way better.  There are also people in as much pain as me, or less, and they are doing far less than I am.  I look at the people doing more, and those people doing less look at me, and we all ask the same question: Am I doing enough?  Am I trying hard enough?  I literally feel like I am doing as much as I possibly can, so it is really hard to see people doing better than me who feel as crappy as I do physically.  Then again, I look at people who are doing way less, people like Eleanor collecting their disability checks, and it’s hard not to wonder if I’m just doing too much.  Am I pushing myself too hard?  Do I even need to do all of this? 

This whole piece has made it pretty clear that there are a million differences in everyone’s lives that come into play.  Yes, some people are going to do better than you.  Some people are going to have it easier than you.  But only you know how much you can handle.  Keep doing your best, keep working your hardest.  As long as you know your limits and listen to yourself, body and mind, you are doing exactly as much as you are supposed to.  You are doing enough.

Here is a photo of me listening to my textbook at work.