Each individual affected by Ankylosing Spondylitis has their own unique story. We at SAA believe that each and every story can be a source of inspiration for anybody in a similar situation. We’d love your story as well! Send it to us at firstname.lastname@example.org
By Anonymous Author
I am a 37 year old female with ankylosing spondylitis. My symptoms began when I was eight years old and I was finally diagnosed at 28. I take the management of my disease very seriously, most likely because for over 20 years my pain was dismissed. It was implied directly and indirectly that I was just really sensitive, overly dramatic, or otherwise unable to handle the aches and pains of normal life; that nothing was wrong with me.
When asked to write about my personal experiences as a patient who takes an opioid, I didn’t know whether I should do it. I felt proud to be asked, but then immediately panicked. How can I, a mother going through a divorce, put my name to such a topic? How could I risk exposure and public judgement by unapologetically recounting my experiences? That was the moment I knew I had to do it for everyone like me who is simply too afraid to discuss this topic.
After my diagnosis, I found the incredible resources of SAA. When I learned that my area didn’t have a support group, I volunteered to become the group leader. I absorbed the information in my “SAA Group Leader Binder” and then scoured libraries, book stores, and the internet to try to understand what was happening inside my body. I participated in research trials with the top researchers in ankylosing spondylitis. I tracked my labs, journaled life and dietary changes, and everything else I could think of in my search for the direct causes of my flares and pain.
In 2008, I began trying different kinds of medications: NSAIDs, DMARDs, and then biologics. By the end of 2009, after failing two of the three biologics available at the time, I started taking hydrocodone for pain relief. This was a massive decision for me. I am the type of person who has never had detention; I don’t drink alcohol – not even socially; I have never done drugs and to my friends’ dismay never caved in to peer pressure, even in college. I hate confrontation so much that I always follow the letter of the law, and yet I decided to start taking a narcotic of all the evil things!
What I found in hours was relief. Never have I been totally pain free, but it took the edge off so my brain could actually think about something other than how much I hurt. Hydrocodone has given me back a quality of life that no other drug, diet, herbal supplement, exercise, or old wives-tale I have tried, and TRUST ME, I have tried them all.
Still, taking narcotics feels dirty. It is a shameful secret I keep closely guarded now. I learned the hard way with a friendship I had for two years. This woman’s son and my son shared regular play dates. One day she was telling me that if I would just go gluten free like she had, all my symptoms would disappear. This was not new advice from her and you can only hear it so many times before you pop.
During my “pop” and in trying to explain for the hundredth time that I did go gluten free for a long time with no changes, that I have had two gut biopsies check for gluten intolerance, Crohn’s disease and celiac disease - as I tried to explain to yet another person that spondylitis is a disease - not a consequence of poor lifestyle choices, that it is an incurable, progressive disease that even the most powerful medications have done little to alter the progression of and that only hydrocodone has given me back a small degree of quality of life….
I let it slip. My secret was out and my greatest fear unfolded before me. She said, “You mean to tell me you take prescription pain killers and have been around my child?! I am sorry but my son will never be able to come over to your house again unless I am there.” I was devastated and have never told another friend again.
When you take narcotics for pain relief you are branded a criminal. You are made to justify and prove your innocence to everyone who knows the secret: doctors, lab technicians, pharmacists, loved ones, colleagues - even yourself at times.
Addiction is indeed a horrible problem in our nation. I understand the need for increased enforcement to try to solve the problem, but everyone has seemed to have forgotten that even exercise can become an addiction to someone who has an addictive personality. Since hydrocodone’s reclassification as a Schedule II drug in 2014 I’ve experienced some difficult and frightening things.
The week before the new restrictions that only allow handwritten prescriptions for a 30 day supply of hydrocodone came into effect, I happened to have a regular check-up with my rheumatologist. At the end of my appointment we walked into the hallway where we were accosted by her staff. They pleaded with her to stay out of sight and not come up to the front office. They told us that the “new patient,” who was 45 minutes late, was now in the waiting room and demanding to be seen by the doctor then and there. We could hear her raised voice from the back of the hallway. As I went through to the waiting room, a woman was screaming curses at the receptionist who had to lock the glass window out of fear for her safety. Their new patient was a drug abuser, without a doubt. I asked if there was a problem and put myself between her and the counter. The woman told me what I could do and then ran out the door.
The receptionist was trembling in fear. I said, “Dear LORD!! Is this happening because of the new regulations?” “That’s the sixth one this week,” she said. Receptionists are not police, they are not drug counselors. Receptionists should not be on the front lines of our nation’s drug problems, but because they are, every single patient is treated with suspicion.
Fast forward to 2016. The CDC has new, more restrictive guidelines on opioid prescriptions for chronic pain. Emergency rooms are starting to declare themselves “no narcotics” facilities. Across the nation, patients like me are frankly terrified. Not because we’re addicts and afraid we won’t get our high, but because without the pain medications we need, our quality of life will greatly suffer.
Since the new guidelines something else interesting happened to my doctor. As with all doctors, she can only order Schedule II prescription pads from the government, and can only order five at a time. She placed her normal order and it didn’t come. For four weeks. When the order finally arrived, she only received one prescription pad. All of her rheumatology patients, including me, had no access to pain medications for a total of six weeks.
Accordingly, each of us had to make the following phone call to our primary care physicians’ office. “Hey, um, funny thing just happened. You see, my rheumatologist normally prescribes hydrocodone for me and, um, the government didn’t send her any prescription pads and her office told me to call you guys and have you write my prescription for the next month or so until she gets more.” REALLY??? How does that sound? Can you imagine how it makes a person of my sensibilities feel?? Did I also mention this all happened on a Thursday afternoon? The receptionist said, “I’m sorry Dr. So-and-so won’t be back in the office until Monday. We will talk to the doctor and get back to you.”
Here is the problem. I have taken this medication as prescribed, or at a dose less than prescribed, every day for years, and now I had a day’s worth of medication but three days to go until I might be able to get my refill. I am not an addict but my body has developed a physical dependence through the years. I was going to have to go into withdrawal. So then guess what? I became a criminal. I asked my closest friends to check their medicine cabinets to see if they had any; they did and I took them. That was the first and only criminal act I have ever participated in.
On Monday, my primary care doctor called and filled the script for me. When I picked it up she told me that they have had to do this at an alarmingly high rate lately and didn’t understand what was going on.
When I saw my rheumatologist a month later I demanded answers. I told her the truth of needing friends to get by and said, “I have never done that in the eight years that I’ve taken this medication and because of the government I didn’t have a choice.” She said, “Neither did I and all of my patients had to go through this same thing. It’s horrible and there was nothing I could do.”
In order to have a small increase in the quality of my life, to nudge my pain from a seven or eight into a four or five I feel like I’m looked at as a criminal, or only slightly less insulting - as someone who just “can’t handle it.”
I have been unfairly judged and labeled by close friends and even family. I suspect that even as you read this you too have thought… “hmmm yeah but what is she really like?” I have had to sign my right to privacy away through a pain management contract. I have been left without medication through no fault of my own nor my doctor’s. I have endured eight years of peeing into a cup every four months to continuously prove my innocence.
As tougher regulations and additional restrictions keep being levied on chronic pain patients, and physicians who prescribe our medications, I feel that I must share my story. I must share mine because it is often too risky or difficult for those who need opioids to do so. I pray that perhaps this article reaches someone who will begin to consider what is happening on the ground to chronic pain patients who rely on these medications.
If taking hydrocodone at the prescribed dose and frequency for eight years is a criminal act, then I am a criminal but I am NOT an addict. I am not the problem and neither are the millions of other chronic pain patients who use their medications responsibly and are compliant. Please stop treating us like addicts, like ‘less-thans,’ like criminals. I am simply in pain and hydrocodone helps me.
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