How the Opioid Epidemic Made Me Hide My ‘Dirty Little Secret’

Have you ever felt like you had a dirty little secret? Something that shamed you and caused you to feel guilty, even though you really shouldn’t feel that way? That is how I feel. Because that is the stigma. My name is Melissa. I am a mom living with chronic pain. I am the face of the other side of the “opioid epidemic.”

By the end of this, I am sure some people will have opinions about me. Some may comment, some may keep to themselves. Others may share this article in secret, or in support groups. The purpose for me is to tell my truth and share my story, and maybe help some others along the way. Writing this scares me to death, which just means it’s time to do it.

I remember my first surgery in 1999. I was a teenager and I was in pain. I remember my mom monitoring my pain medicine. I honestly couldn’t tell you what the medicine was; all I know is that my mom told me it was addictive. Hearing that was enough for me because I didn’t want to form a habit of any kind. I mean, I was the girl who shamed my own father for having a beer at dinner. I was the poster child for good behavior. So, after a few days, my mom flushed the medication down the toilet and that was the end of that.

Now, since that surgery, I have added at least 16 more to the list. I lost count around 12 or 13. After each one, those words hung over my head: “Addictive, be careful.”

After my first brain surgery, I had several complications. Anything that basically could’ve gone wrong, did. A few of those complications landed me in the hospital for an extended stay. I had been really sick, and the doctors couldn’t figure out exactly what was wrong with me. I was in pain, we were keeping it controlled, but I couldn’t keep anything down. Everything made me sick. I remember at one point my nurse, who had been with me a couple of days, came in when it was time for my medications. She asked me if I had been taking my meds at home, as prescribed. I had been, but I had been trying not to take the pain medication because once again, those words were burned into my brain. She then started to question the medications they had me on in the hospital and asking if I really “needed” them. Now at the time, I had a tube hanging out of my spinal cord draining fluid off my brain and 22 fresh stitches in the back of my head. This same nurse watched them put the stitches in my head without numbing me. So, I was confused when she started to question my medication. Then she flat out said it. “Do you think you are experiencing withdrawal symptoms?” I was a little put-off, and more than a little upset, because no, I didn’t think so. But that was all it took for me to wonder from that moment on: what do people think of me?

This was also 2010, and the epidemic wasn’t at the forefront of conversations like it is today. Doctors didn’t have the same restrictions when it came to writing prescriptions for patients. Nevertheless, I remembered the words my mom had said to me 10 years before and here I was, panicked that this was happening now. That I was an addict. Spoiler alert: I wasn’t. But I wasn’t going to realize that for a long time.

So here we are today, several surgeries later, and that conversation has stayed with me. The accusatory look behind the eyes of every doctor or nurse at my appointments is still there. I see it in the eyes of the pharmacist when I pick up medication as well. If I find myself in the emergency room or urgent care for any reason, I automatically clam up when they review my diagnosis list, ask what medications I am on and what works for me. That fear is there. The fear is always there. The fear I will be labeled a “drug seeker” or an addict.

Here is my truth. I have two brain conditions. I have a bone disease where the bones in my joints are literally dying. I have Ehlers-Danlos syndrome (EDS). I have chronic pain. I also have a blood disorder — my blood lacks a factor needed to clot, therefore I cannot take any NSAIDS. And believe me, I would do unspeakable things for an Advil, but taking an Advil could potentially be deadly for me. I have also had reactions to several long-term medications. I am allergic to several others. Basically, the medication odds are stacked against me.

I am being treated for pain management — something that took me years to do because of the stigma. Does that mean I show up monthly and get a script for opioids? Quite the opposite, actually. Part of what I do is participate in a program that requires me to do so many hours of physical and occupation therapy and work with a pain psychologist. That helps teach me physical ways to manage my pain. Does it always work? No, it doesn’t always work. So we try nerve blocks, lidocaine-based creams and other methods of treating the pain. I am also a medical marijuana cardholder. This is a highly controversial subject in my family. Like, huge. Like, so huge I have debated on whether or not I was going to let this get published with my name attached, it’s that huge. So, if you are in my family and reading this… Hi. I love you. This doesn’t define or change who I am; it actually helps me be the person you have always loved and still will love long after the shock of learning this little tidbit about me wears off.

A local girl recently lost her battle with addiction. The topic was a discussion at dinner with my family. It was brought up how easy it is for young people to have access to drugs, and that now our government is “letting” it happen by saying marijuana is “medicine.” It was so hard for me to sit and listen to this, knowing I am a cardholder for that “medicine” and knowing it has been the only thing to get me out of bed some days. The stigma has everyone believing cardholders sit in their basements getting stoned. Well, guess what? That ain’t what’s happening. That card gives you access to different forms of medication that can help you, and not all medication has THC in it or is euphoria-inducing. It’s anti-inflammatory and non-habit forming. Meanwhile, at the same time, I also know that opioid medication is also the only thing that can help me function some days. But the stigma has made it hard — the stigma that anyone who needs to take pain medication is a drug addict. The stigma that someone who uses cannabis as medicine is looking for an excuse to get high.

I had major knee surgery last month — my third in just six months. My dad offered to pick up my medication at the store to help us out. Unfortunately, they wouldn’t fill my script, saying their policy did not allow them to. The way my doctor had written for me to take the medication didn’t meet their guidelines. This same store only filled half of my mother’s pain script after she had foot surgery, stating that her doctor should know she only needed a few days worth for that procedure. The stigma from the opioid epidemic has worked against those who need these medications. There are days I am in so much pain I can barely breathe, my husband will tell me to take something, and I’ll actually tell him no; what if I need it another time when the pain is even worse? Because of this stigma, I am terrified to ask my doctor for a refill, or even suggest that I am in pain.

I am a mom. I have two children — two perfectly beautiful kids, full of energy and demanding a lot of time. Kids who know my heating pad and icing schedule better than they know when “Paw Patrol” will be on next. It’s because of these children that I need to be present. Sometimes, being present for them is taking a pain pill so I can be at their events, or play with them. It also means I can’t use certain strands of medical marijuana because they make me too tired or spacey. It means I carry CBD oil in my purse along with 10 other medications so I’m prepared for whatever the day may hold.

However, the stigma of a person needing opioid medication has made me feel like I need to hide. The stigma of someone needing cannabis has made me lie straight to family members’ faces. There are so many others out there, like me, who live on this side of the epidemic. They fight chronic pain and illness and have to choose their battles for their families and for themselves. They are patients who have to fight and advocate for help and attention. The harder they fight, the worse they look in the eyes of some people in the medical field. It’s a double-edged sword. I live with incurable conditions. I have good days — I have some really freaking good days. Unfortunately, it seems like every good day is followed by a week of bad ones.

The epidemic is real. Addiction is real. Regulations do need to be put in place, but there also needs to be understanding. We have to do better to fight the stigma around the people who truly need this medication. Whether it’s opioid medication, cannabis or both, like me. There are just as many people dying from this side of the fight. People who are in so much pain they feel the only way to be pain-free is to die. These people aren’t weak, they are scared. The people who die from overdose and addiction aren’t weak; they are sick. The epidemic attacks both sides. Become aware. Help end the stigma.

A version of this article was previously published here.