Saturday, July 12, 2014

Side Effects: Drug Addiction in the Chronic Illness Community

Note: I do not know what will fall from my hands. This post discusses drug addiction from the point of view of someone who has lived with those who are drug addicted and have witnessed drug addiction within the chronic illness community. Subject matter may or may not be controversial. Language content may be strong. 

Please stop here if the following triggers affect you: substance abuse, family disturbance, trauma related to medical treatment and/or neglect

"Oxycontin, Xanax bars, Percocets and Lortabs
Valium, Morphine patches, Ecstasy and it's all up for grabs
Whatchu want? Whatchu need?
Hit me up, I gotchu man
Whatchu want? Whatchu need?
Hit me up, I gotchu man"

- 'Lil Wyte, "OxyContin" (Phinally Phamous, 2004)

[from my brother's music collection]

I tromp up the stairs, two at a time, and jog up the slippery hill to the apartment where I live with my mother and two younger brothers.

It is 2005 in the final stages of fall. I am 18 years old, it is raining, and its far too late for me to have been out...assuming that I had a curfew. 

But I don't. Because I'm "an adult". 

I've always been the Responsible one. My job is to make sure that the rest of the family is doing ok...but I've been gone for the past several days. I haven't heard a peep from anyone, plus I needed to refill my med box: Adderall, Xanax, Seroquel, and Remeron. Normally I do not take them but I am doing my best to stay home and out of the confines of hospital walls. If I screw this up, I'm not going to graduate on time.

And if I really screw this up...?

I unlock the front door and slip in without a sound. I shut the door, slowly now, and lock the door with a cringe. The clicking of the lock could wake up my mom if she's fallen asleep on the couch...

...but no one is there.

I make my way down the stairs to check on my youngest brother. No one is down there either. I let out an (I'm sure) audible sigh of relief. He must be with his father, and if that is the case my mom could be just about anywhere...enjoying herself. 

After all, I'm 18, an adult. Responsible. Philip is 17 and handles himself. 

But we don't really talk about what's actually going on...

...I'm yanked out of quiet pondering rudely by something heavy scraping across the floor upstairs. 

My heart sinks. 

Philip's home.

Oh no. No, no, no...a hard lump bubbles in my throat as I shed my jacket and shove my key chain into my pocket. The fewer layers, the better for what has to come next.

I steal up the stairs, armed only with silence, shock, and surprise. I peek over the top step, head level with the landing and spy through my own bedroom door; the light is on. Philip is in there, my clothing strewn all about as if his Livelihood has somehow ended up in the wrong person's laundry -- and in a way it has. Since he thinks he is alone, he spits out curses of frustration to himself:

"Where the fuck is her SHIT?!" he utters as he takes one of my dresser drawers and hurls it across the room. It knocks over a space heater that was left on, a very nice one given to me last year by friends, and small flames erupt.

He doesn't notice.

But I cannot move. I stand there frozen right before I jump over the railing to tackle him, wrestling him to the floor to stop his rage stricken search and demand he leave (I am tiny compared to his height and his normal weight, but I have the martial arts training. I am the older of us. I always win). I stand there stagnant --horrified, not understanding the depth of that desperation.

I am the older of us. I am the Responsible one. My job is to make sure the rest of the family is doing ok. But I am no match for this ugly monster that has possessed this boy who was once my brother. 

Who is this man? 

I single tear escapes as I chamber for the leap over the hurdle, waiting first for the heavy realization to pass that my illness -- and the drugs that the doctors give me to help treat this illness -- is killing my first and closest friend.


If you ask most people within the chronic illness community -- the ones who are able to speak for themselves and post on message boards of various types -- a top complaint is finding adequate pain control.

There's a number of reasons that pain management is a difficult concept, and a lot of it actually had absolutely nothing to do with a patient's doctor.

It has everything to do with the patient's state of mind.

In essence, we have created a monster -- people who are not only very sick, but very much addicted to narcotics. And no one -- absolutely no one -- has it within them to say anything about this.

You don't need a higher dose of medication. You don't need a stronger medication. What you really need? Depending on who you are, what you're going through, and the amount of time spent on focusing on how much and how badly you may need to get off the sauce. Completely.

It happens innocently enough. You've been diagnosed with a condition -- in many cases the case is serious and chronic. There may be times that one could call "remission" followed by a hard relapse. So your primary care physician prescribes a short course of "as needed" ("PRN") narcotic pain reliever. Why? You came to clinic, perhaps in tears. You can't work. You can't sleep.

You aren't functioning.

Then you fill the scrip, and suddenly now you feel almost normal again. You go back to work. You start talking to your loved ones again. Finally you are able to find rest.

Several months go by and your doctor is thrilled to see that you appear to be doing better. And in what is indicated as general practice -- you are sitting up, talking, and you're dressed. They take that opportunity to discontinue your narcotic.

You don't need it any longer because you are not in crisis.

But the reason you came to clinic in the first place was to get a refill of this medication, right? You protest, stating that the only reason you were able to get up, dressed, and into clinic was because of the medication.

Congratulations. You're now addicted to narcotics.

According to National Library of Medicine: "substance use disorder occurs when a person needs alcohol or another substance (drug) to function normally"

"Addiction means that a person has a strong urge to use the substance and cannot stop, even if they want to. Tolerance to a substance (needing a higher dose to get the same effect) is usually part of addiction" -- National Library of Medicine: Substance Use Disorder

What strikes me in forums (these are threads I rarely respond to) regarding topics of chronic pain is the volatile anger present within the text. The passive aggressive arguments that break out -- sometimes over trite, ridiculously pointless subject matter! Getting angry over what another person gets (or tells the group that they get) for their own pain management, having nasty little competitions over routes and dosages of medications (IV verses by mouth [PO] or under the tongue [SL -- sub lingual]), and other such discussion is not only lacking in benefit -- it could also be very dangerous.

You have no idea if the person on behind their screen has a problem not even they know about. Conversely,  you may have a problem and are sharing unhealthy information.

Where things get confusing is not online with other people, but rather in hospital or your own doctor's office. You could be in very, very real and legitimate pain. Maybe you're in a position where pain levels have been off the chart, hours and hours of sleep have been lost, mood is unstable, and you're in the emergency room. You see a physician and are given something for pain management and it works. The physician orders relevant tests, and while nothing came up that would warrant further intervention you have now associated the ER with no longer being in horrid levels of pain because a doctor has the authority to give you opiates that stop whatever undesirable sensations are going on within you.

The above scenario sounds legit. This is how we treat moderate to severe pain in the United States. I did not just describe a "drug deal"...I just painted a portrait of a patient that was hurting badly enough to get checked out by a doctor. It probably wasn't cheap to do this, given that you have the same insurance that 97% of the country has (a PPO or Medicare w/ supplement).

Except for one problem: the patient went in because of pain and the doctor found no problem. None. No evidence of anything wrong, not even an underlying condition that could be flaring up. If this is the case then this was, indeed, no better than buying rock of the street corner.

The funny thing about street corners is that they are everywhere. You cannot avoid them. One usually passes through the same streets over and over again because of their location and intention. Our friend above now associates a hospital -- where sick people go -- with feeling better. This is flawed thinking. Know what I associate a hospital with?


In no circumstance should it ever, ever be a rational choice to go to an emergency room because of pain independent of any other issue (i.e. pain because you were hit by a bus, or you're having chest pain and cannot feel your shoulder/arm/etc -- indicative of a heart attack). If this seems like a plausible idea to you -- if you visit the ER just because your stomach hurts but nothing is really wrong with your stomach according to every doctor you've seen --  and your intention is getting something for pain again and again, then you have a drug problem.

"But my doctor won't give me anything..."

By law, a doctor must treat pain. However, they absolutely do not have to feed you opioid drugs in order to do this. In fact, they don't even have to give you an aspirin. Substances are optional in pain management with exception to palliative patients.

This is where running to support forums gets hairy. Someone writes that they went in for chronic pain (which should be a  bright red flag right there) and then describe in grueling detail that everyone -- the nurses, the doctor, the janitor -- was "horrible" to them and sent them back out the door and did nothing for them. If you were to read this, I bet there would be a sense of outrage within you, right? That is, assuming that you also post on this board because you struggle with a similar diagnosis. You would feel awful if this happened to you, so in trying to be helpful -- and not understanding the whole situation -- you share a real, detailed experience of yours where something similar happened (though of course nowhere near as bad as what the original poster experienced) and what helped to eventually get what you needed.

Unwittingly, you may have just gave someone ammunition to obtain something they have no business getting in the first place.

"Commonly abused substances include: opiates and narcotics are powerful pain killers that cause drowsiness and sometimes feelings of well being, elation, happiness, excitement, and joy. These include heroin, opium, codeine, and narcotic pain medicines that may be prescribed by a doctor or bought illegally" (ibid, emphasis is mine) 

Here's the down-low: prescription medication is the second most common substance used in illicit drug use. Coming in first? Marijuana. This means that it is more common for someone to be abusing a prescription drug than it is for someone to be dependent on alcohol or street drugs (National Survey on Drug Use and Health; 2010 and 2011).

The above survey only covers those who have admitted to be using prescription drugs for non medical gain. Accurate statistics for those who first used narcotic pain medication for their intended purpose and later became addicted are even more sickening: 




If none of this is convincing to you yet, if you think that this post in in bad taste or 100% inaccurate, then perhaps you should have a real heart to heart with a trusted friend. Write down your thoughts and do what you want with them. Meditate on them, share them with a treatment team member, burn them, send them to me, whatever you wish...

...who knows? Maybe I am completely insane and none of this is relevant.

But please, please don't disregard this post.

Why am I writing this?

For the first time I got the chance to listen to and talk with a substance abuse professional at a local NAMI meeting. Here, he detailed his own struggle and in his transparency shared that he carried this burden even through a battle with cancer.

And right then my heart broke. Shattered. My eyes welled up and I had to take a few deep breaths. This tall, "normal" looking man -- he could very well be Every Man -- battled with an addiction at the same time as battling another illness. For a brief second the weight of that struggle settled into my chest and I felt as though I could drown within that hopelessness. My mind visited my own experiences trying to find psychiatric help in dealing with these medical issues. The look on people's faces arrange in an appearance of harsh judgment.

I could not imagine being a cancer patient, having to struggle alone in striking a balance between pain relief and an oblivion that could swallow one whole. Typically, those who struggle with severe, prolonged medical conditions cannot participate in intensive drug treatment programs, just as they typically cannot participate in intensive eating disorder treatment programs or inpatient psychiatric units.

But this mas did not turn to pain medication as a solution. He used the pain to serve a greater purpose: to get well and fulfill a goal to help others.

Because my heart broke right there, this blog post presented itself. This message that needs to be said: you don't have to keep this up.

If somewhere you question your own motives behind what you choose to use your medication for, you don't have to harbor this anger that you cannot get what you need. It could be that what hurts cannot be helped by any pain reliever that exists -- legal or not.

You do not have to be submerged in this shame. No one chooses to become addicted to something. That's the nature of it addiction -- it consumes your life. And both of you cannot win.

What you do have to do? You have to stop using your illness as an excuse. You have to lose all the excuses that you can think of. You have to ask for and receive help.

You have to be honest and true to yourself.

Philip became dependent on stimulant mediation for a legitimate medical condition. Later in life, Philip was given opiate medication to treat the DT'S (detox) that could have caused lasting damage.

And guess what? It did.

It killed him.


I cannot tell you if you have a problem. I can describe what a problem looks like. I can give you statistics. I can share my experiences -- albeit limited -- with you.

But I cannot make any choices for you.

For that, you have to love yourself and the ones close to you enough to be honest.

You have to value your life enough to save it.

(confession...this blog started as a pain management tool. Not all pain is bad. Sometimes discomfort can make amazing things happen.)

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