Surprise! We’re Chronic and Intractable Pain Patients, NOT Addicts!

24 Aug

“Advocating for Another” Carnival 2012 – Day 4

by Heather Grace IPJ Staff Writer

severe back painThere are plenty of things the average person doesn’t know about the pain community. Let’s focus on a really harmful myth: The stereotype about pain patients being a bunch of crazed addicts. It really rubs me the wrong way. Our reality couldn’t be further from the truth. And it’s time you heard some of the reasons why. Here we go:

First, I think it’s important to set the record straight regarding the myth that people with pain who are prescribed pain medication are in serious danger of becoming addicts. Chronic/intractable patients who take pain medication are no more likely to become addicted than the general public, despite the media mudslinging. Their biased attacks are damaging to pain patients–threatening access to vital medication throughout the country. I’m not sure why the media has resorted to such harmful tactics, but we’re not actually that newsworthy. Though fact-based stories on addiction stats can be boring, we’re just like the rest of the country. According to government statistics (SAMHSA), the addiction rates are well under 5%.

Living with Pain

Regardless of the public’s often negative viewpoint, people with diseaseses like Central Pain Syndrome, Adhesive Arachnoiditis or Trigeminal Neuralgia often depend on prescription medication. It’s an important part of many patients’ pain care protocol. Not because they want to use this medication; it’s not because they enjoy the ongoing doubt by family and friends, the hesitation of physicians, the media attacks that end up riling up the public into near-frenzy. As patients, each of us takes whatever treatment works for us, because we want some semblance of a life back. Period.

We never asked for any of this. Personally I’m shy by nature. I don’t want to be the center of attention for any reason. But to question my character, to believe I am capable of being a bad person, scheming and creating this whole “illness” — that makes me sick to my stomach.

I’m not an addict. I’m not enjoying one minute of any of this. I didn’t enjoy the years of mistrust that kept me from getting care. I didn’t enjoy the fact that I was a rag doll being tossed around the Worker’s Comp System at will. And, I certainly don’t enjoy the fact that I will live with intractable pain for the rest of my life because they didn’t treat my illness effectively when I begged them over and over for their help. Even more, I don’t enjoy all the worry this situation creates.

pain medication

I don’t think most people realize that we who life under the microscope merely because we are sick absolutely hate it. I hate that I have to worry every minute about my doctor being there for me from month to month. What if he retired? Or was investigated and bankrupted by his defense? What if he just couldn’t take the pressure any more and walked away? Worry about the pharmacy having my medication, or like my doc, being investigated and going broke. Then, there’s worrying I will get a knock on my door from the friendly neighborhood DEA. Merely being a patient has gotten many people arrested, and even imprisoned–and I know I wouldn’t survive that! And then there’s the very real concern that federal or state laws will regulate me right into an early grave.

If you think I’m a bad example and no one else worries like this, think again. I’ve talked to many others and they are all scared. As if the stress is good for us! If your illness was constantly in the media spotlight, how would you feel? What if there was also increasingly tough legislation that you knew was endangering people’s lives all over the country? It’s a scary time to be a pain patient.

I even dislike the process and all the nonsense that goes with it. Unlike other illnesses, we cannot just see the doctor every 3-4 months or longer. Nope. Even though I like my doctor, I despise being forced to check in like clockwork, monthly. Same with the meds. We cannot get 90 days worth of medication at a time with a bunch of refills–despite the fact that this is a lifelong illness. Oh no, we’re at the pharmacy every 30 days. And what’s even more annoying to me… refills are not allowed. And, if you happen to see your doc a little early? That makes things even more fun. When I go to the pharmacy, the prescription has to be put on hold and filled later. Why? It hasn’t been long enough since I last filled it. What’s even more upsetting is that I am stuck in California. I cannot move–even if living elsewhere may be cheaper, because I’m terrified I couldn’t find a decent doctor elsewhere. (I’m blessed to have a very good one here.)

Reading all of the above should present a pretty clear picture of all the reasons why none of us enjoy being reliant on opioid medication for our treatment. Why on earth would any of us want to live this way? It’s not a choice–that’s what people need to understand. Not at all.

And, here’s the real shocker. Like most people who are in severe, constant pain, I have never gotten a “high” feeling from my medication. Ever. I think that would surprise most people. But, here’s the thing… We need the medication just as if we had anemia and needed to take iron. Or had diabetes and needed insulin. It’s the correct treatment for a serious illness. I’ve talked to many other people who’ve had the same experience. We don’t see why people abuse pain medication. It doesn’t make sense to us, because we’ve never seen that side of these medications. To us, they are vital treatments for a gravely serious disease. To us, pain medication is a lifesaving treatment. Period.

I wouldn’t wish my pain on anyone. Ever. But, I really do wish everyone would have the decency to believe us when we say we’re in serious pain and persist with our pleas for help over so many years. All we want is some mercy. Some understanding. The willingness to see us for who we are without judging. To believe us. The fact that we don’t have that from the world around us is what really surprises me.

People with chronic and intractable pain are just like anyone with a life-threatening health problem. We very ill people who need ongoing access to a truly vital treatment. Is that really so difficult to understand?

The above blog entry is part of a week-long series created by WEGO Health “Advocating for Another” Carnival 2012. You may follow my blog here, and see me on Twitter @IntractablePain. Check out other entries: #A4AMONTH.

© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.

Advertisements

15 Responses to “Surprise! We’re Chronic and Intractable Pain Patients, NOT Addicts!”

  1. Adrianne Johnston August 26, 2012 at 4:41 pm #

    I’m so glad you posted about what we with chronic pain go through and the misconceptions the general public have. Especially, the fact that that those of us with chronic/intractable pain do NOT get high from the opiate analgesics we use. This is something so many people don’t know.
    And, the low stats of those who become addicts? I love it. I try to inform people that there is a difference between addiction and dependence when it comes to opiate analgesics.
    Thank you for your wonderful post!
    Adrianne

    Like

    • thepainjournal August 27, 2012 at 4:35 pm #

      That’s right. We’re DEPENDENT on pain meds just as diabetics are dependent on insulin. It’s necessary for survival but isn’t the least bit of a party for any of us! Thanks for the comment–and sharing some of your story here, as well. Take care, HG 🙂

      Like

  2. Jessica September 10, 2012 at 9:12 pm #

    So tired of being in pain…and you said everything i feel and think … get sick of saying i’m in pain no one whats to hear it!!! If i didn’t have pain medicine that takes they edge off some of this pain..i would blow my brains out..There is no high from it just some relief from it. It’s the people that abuse it make us look bad. Don’t take pain meds if you don’t need it!! Yes and the once a month thing stinks. I don’t drive so they make it so hard for me. The DEA makes it so hard on the doctors that just want to help you! Soft hugs to all that have pain (((hugs)))) Jessica

    Like

    • thepainjournal September 28, 2012 at 3:03 am #

      Thanks for sharing your story, Jessica. You’re very brave and I’m glad we can be there for each other. Write anytime or find me on Twitter @IntractablePain. Hugs! Take care, Heather

      Like

  3. shannon truttmann October 4, 2012 at 3:39 pm #

    this is my first time responding to any type of blog, forum, etc. This story hit home! you explained my life to a “T”. I can feel my body dying. I dont know where to get help. The harder I try to find a good doctor, the worse it looks. As I am writing this, tears are rolling down my face. The suffering is not only affecting me, but also my children and Wonderful husband. I am crying also because there are so many of us. Please if anyone knows how I can get help let me know. I am at the end…only enough strength left in me to try ONE more time to get help,and this is only because I love my husband and children too much to give up.I dont know what to do, and I am so frightened.

    Like

    • thepainjournal October 4, 2012 at 9:16 pm #

      Shannon: I’m so sorry. I know how hard this all is! I have replied at http://wp.me/p1tJ4V-57, to give you a full article’s worth of information/support. I think your situation warrants it. I’ve also emailed you my contact info. Hang in there, and please get in touch. xx Heather

      Like

    • C.M. October 5, 2012 at 1:36 pm #

      I might be able to help..I hope!! I suffer from Intractable Pain too! Look up ” Dr. Forest Tennant, at Veract Intractable Pain Center in California”!! He is the only doctor I know that knows how to treat intractable pain correctly! I hope this information is helpfull to you!! Please stay strong!!
      C.M.

      Like

  4. Amanda December 15, 2012 at 6:12 am #

    Thank you for sharing! This article hits home for me. I am 23 years old and have severe chronic (possibly intractable) pain. It is horrible. I am trying to go to college, but my pain levels are 8-9/10 everyday. I haven’t had a pain free day in six years! I just want to feel better. I am doing all the treatments- the back injections, seeing specialists, the medications (which are not even close to working on bringing down my pain at all). I see my life slipping by me. I am 23 years old and I want to be a surgeon. But my pain is so bad that I can’t even make it to school most days. I fail a class or two every semester because the pain interferes with my ability to go to class. Studying is hard to do when your at an 8-9 level pain. My pain starts to make me feel kind of out of it, and it’s hard for me to read when the pain gets that bad. I don’t know if that happens to anyone else. The pain interferes with my ability to spend quality time with my family- I spend the time but I can’t be “present” because the pain is so out of control and distracting. It’s so frustrating. I don’t know how to communicate to my pain management doctor the absolute need for more aggressive treatment. I just want to be normal again! The only reason I want to go to the hospital is to be because I work there one day, NOT because I am getting another MRI or having another surgical procedure done! Praying for you guys tonight, and I hope you feel better soon.

    Like

    • thepainjournal March 15, 2014 at 2:02 am #

      PLEASE PLEASE PLEASE get a note from your doctor(s) and go to the ADA office pronto! I finished my MBA in 7 dang years because I was able to get ADA accommodation. What was the accommodation? Basically, when I need extra time due to severe pain/illness, they need to give it to me. I didn’t ask for it much, because I took classes VERY S-L-O-W-L-Y. But, you can/should graduate with no marks against you for your very serious illness! Trust me! Get info on what to have a doctor say about your illness (symptoms etc are listed very straight-forwardly at intractablepaindisease.com). Best of luck! I want to see a fellow IPer become a surgeon. I know you’ll be great! 🙂 HG

      Like

  5. Paul Troy April 4, 2013 at 5:33 am #

    I can relate to everything that you said in your post. The monthly doctor visits just to get a prescription for meds I have already been taking for years. Finding a pharmacist that will work with me being a cash patient and not always able to afford to fill the entire prescription at the time I bring it in. Not being able to try different pain meds that may make a huge difference in the amount of constant pain I am in because they are just to expensive for me to afford. I have suffered from 24/7 severe chronic pain for going on 8 years now and it’s been slowly but surely killing me. I can feel my body beginning to show signs of failing. I was warned that this would happened years ago but never really wanted to believe it would happen. I have two young daughters and the thought of not being around to see them grow up, go to college, start careers and families just breaks my heart. Also the fact that I can’t get any of my doctors to admit that my pain is intractable is incredibly frustrating. I am 46 years old and I feel like I am 80. I appreciate the chance to vent. I could probably go on and on as many of us would like but I will leave it with a thanks you and you are not alone. ~Paul

    Like

    • thepainjournal March 15, 2014 at 1:39 am #

      Thanks for sharing Paul. I commend you for letting out your stress and sharing how you feel. It’s GREAT for your family that you’re able to do so in a healthy way. FYI, check out your hormone levels if you can, especially testosterone. And check out hormonesandpaincare.com. Why? My immune system was crashing before I had an intervention on my hormones. I have to take cortisol, thyroid and progesterone now, because they were all out of whack badly! Such fatigue, worsening pain for a time, getting any/all colds. It was so scary. I’m getting things back in line, but it’s a slow process. (FYI, I suspect my testosterone is out of whack too…even in women this is an issue w/prolonged stress on the body.) Good luck to you and please write anytime. I promise I’ll be more responsive! 🙂 HG

      Like

  6. Ernest October 27, 2014 at 12:27 am #

    Everyone loves what you guys are usually up
    too. Such clever work and reporting! Keep up the excellent
    works guys I’ve added you guys to blogroll.

    Like

    • thepainjournal March 2, 2015 at 12:29 am #

      Thank you so much! We love the feedback and welcome it, good or bad, from all our readers. But of course, compliments are always grt to hear! Let us know ANYTIME what else you’d like to see on Intractable Pain Journal and—as always—if you know of any interested writers! 🙂 HG—IPJ Editor

      Like

Trackbacks/Pingbacks

  1. Chronic Pain Patient In Crisis: Lifesaving Care Needed « Intractable Pain Journal - October 4, 2012

    […] This is my first time responding to any type of blog, forum, etc. This story hit home (Surprise! We’re Chronic & Intractable Pain Patients NOT Addicts)! […]

    Like

  2. We’re Chronic and Intractable Pain Patients, NOT Addicts! | EDS Info (Ehlers-Danlos Syndrome) - December 2, 2013

    […] Surprise! We’re Chronic and Intractable Pain Patients, NOT Addicts! | Intractable Pain Journal […]

    Like

Share Your Feedback-We WANT To Hear From You

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: