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by Sarah H.
Today, I spent hours on the phone with the pharmacy about a single prescription. This particular prescription has been problematic ever since my doctor first gave it to me. My insurance company has refused to cover it, my pharmacy fights me every month about it, and I am ashamed to tell people that I take it. Yet, it’s the only thing that has allowed me to continue to walk, work, and even enjoy the occasional social outing.
So, why do I struggle with it so much? Because it happens to be an opioid.
I spent much of my life steering clear of any potentially addictive medications because I didn’t want to risk it. It was a social taboo—I was afraid that by using the medication, I would be cutting myself off from the world. Even after surgeries, I would refuse to take anything out of fear. I pushed through pain in any way possible, even if it meant laying in bed sobbing and afraid to move.
Growing up, my pain would come and go in waves. It was much easier to manage then, letting myself rest on high pain days and be active on low pain days. Emotionally, it was also easier to handle since I knew the pain would end over time. I always had that hope. Joint pain could be treated with anti-inflammatories, ice, heat, and physical therapy. Muscle aches would go away with rest, and stomach pain would ease up with time. I was always told that once that one thing healed, I would be back to normal. Granted, I didn’t have my Ehlers-Danlos syndrome diagnosis yet. Everyone legitimately thought that the next surgery, the next round of physical therapy, and the next medication would cure me.
As new symptoms in different areas became unbearable, I would gradually bring them up. With each new thing, I had to explain why I hadn’t said anything before. The reasons I gave varied—sometimes I would say that I forgot to mention it, sometimes I would say that I didn’t think it was important, and sometimes I would say it hadn’t bothered me too much. But really, my reasons all stemmed from a fear of judgment. When I had started complaining to my teachers about pain in my stomach and joints, I was told to hide my symptoms because other students were uncomfortable. When I admitted that my knee hurt at the same time as my shoulder, I was told that it was probably growing pains because it’s unlikely that both joints could be injured at the same time. When I complained that everything hurt, I was called a drama queen and attention-seeker.
That was horrifying to me. I was already self-conscious about the fact that I felt different. I hid most of my pain and other weird symptoms from everyone, including my parents (whether it was because I was embarrassed or because I didn’t understand that it was abnormal). To reach out for help and be met with negativity pushed me even further into isolation. “It’s normal to have growing pains, so suck it up,” I was told many times. Or, as my coach would constantly yell, “Swim through it!” I was embarrassed that these “normal” pains were affecting me so much, so I did the best I could to live with it. And I definitely didn’t want to be seen as a complainer or attention-seeker.
My parents would only know that I broke a bone or dislocated something if I started limping or favoring a limb. I would never outright tell them that I was in excruciating pain unless they asked. Because then it was appropriate to give them the truth since I wasn’t supposed to lie. They found out that I had been suffering from severe acid reflux after I stopped eating bread and meat altogether. By that point, my esophagus was so swollen that the doctor couldn’t fit the endoscope through it. And they didn’t know my shoulder was constantly dislocating until the athletic trainer at swim practice told them he couldn’t get it to stay in place. Despite years of physical therapy and a surgical pin, that shoulder still pops all the time. I didn’t even tell them about my chest pain and difficulty breathing—they found that out when I started coughing and wheezing after my first soccer practice in middle school. Granted, I didn’t realize that it wasn’t normal to not be able to breathe while swimming. I honestly couldn’t understand how everyone else could swim so fast without air.
When my abdominal issues got worse in college, the pain started to really impact my life. I was still able to maintain a level of normalcy, completing each semester on time and continuing extracurricular activities when I felt ok. But, I had to start making choices—should I go to the game and risk missing class the next day, or should I skip the game altogether; should I keep my current major, or should I switch to one that has a more predictable career path; should I go to the doctor about this pain, or should I wait it out so that I can take this exam? It was a constant battle between my desire to make the most out of college and my body telling me to slow down. At this point, I was less able to hide my symptoms. I would break down in tears almost weekly due to pain. It was a whole new battle then. I ended up in the hospital for weeks at a time. Medications for the pain became a necessary evil. But, I would only take them while I was in the hospital, and stop as soon as I was released. With multiple abdominal surgeries, a bout of pancreatitis, and other assorted intestinal complications, I still refused to finish any of the narcotic prescriptions I was given upon discharge. I was ashamed that I was in so much pain.
Eventually, I found a doctor that was able to treat the problem in my stomach, which in turn eased the pain. I was thankful for that relief because it meant that I didn’t have to face the doctors in the emergency room and wonder if they would see me as a girl in desperate need of help or an addict in desperate need of a fix. I also regained a semblance of a life that didn’t revolve around symptom management. I was able to stay out late with friends, maintain a regular job, and volunteer without worrying about a flare-up around the corner. I never experienced a day without pain, but I was able to ignore that pain.
That ordinary life was short-lived, though. Less than a year after college, a sudden and catastrophic string of events forced me to move back in with my parents and become reliant on the assistance of others. A half-dozen surgeries for my chest, abdomen, and low back resulted in a build-up of pain. I spent months being treated by home health. I forced myself to work through physical therapy with as little pain medication as possible. About a year after the first surgery, I was able to return to a new job. The main difference, though, was that at the end of every shift, I was in so much pain that I could barely walk. But, I continued to work like that. I figured that was my new normal—that I would have to suffer through work and avoid excess activity for the rest of my life.
I learned how to hide that pain more and more as time went by. But, it was a whole new level of agony when Chiari and craniocervical instability symptoms began. I didn’t know how to handle the sudden, unrelenting headache that came one day after routine anesthesia. That headache lasted for months until I jumped in for surgery to fix it. The surgery was the biggest, most intense surgery I had ever endured. But I did it because I was desperate to relieve the all-encompassing pain in my head and back. I didn’t fight back about the pain medicine after that surgery. I was so frantic for relief from the ache that I didn’t care how that relief came.
When I got home after surgery, I continued to search for ways to relieve the pain. My headache had gone away but was replaced by an equally intense shooting pain. I used ice, heat, massage, physical therapy, muscle relaxers, anti-inflammatories, and relaxation techniques in an effort to decrease my discomfort. Trying to return to work months later, I realized that I couldn’t handle a full shift without hiding in the bathroom to cry because the pain was so intense. I couldn’t concentrate on anything other than the metal in my skull, the blood flowing through my neck, and the pulsations in my eyes. It was complicated by the fact that my lower back still ached and was constantly spasming due to extreme instability.
I stopped all social outings and rarely partook in any hobbies during my free time. My life became a constant struggle of pain and sleep. All of my free time was spent trying to relax my muscles and distract my brain. I spent a lot of time going to doctors but never felt like I was making progress. Ehlers-Danlos syndrome was finally added to my list of diagnoses and helped make sense of what was happening with my body. It was validating to have a single diagnosis that explained everything—my pain, my weird quirks, my seemingly random issues. But it also told me that there was no magical cure. It meant that I would be in pain the rest of my life. That hope I used to have that the next thing would cure me…that hope was gone.
My life changed the day I started seeing a pain management doctor. Before the appointment, I felt like I was giving up. I worried that by seeing this doctor, people would see me differently. In reality, he helped me gain a bit of independence back.
I take pain medications now. Not because I’m weak, and not because I am an addict. I take them because they are a tool to help me fight this disease.
Just because I need them doesn’t mean every patient needs them. It means that it’s ok to do what you need to do. It means that you are no less of a person for needing medication. Just like a person suffering from depression may need antidepressants, sometimes a person in pain needs that help, too. By allowing myself to use medication, I am able to use more energy to stay active. Ultimately, staying active will help me stay healthier for a longer period of time, and even decrease pain in the long term.
It’s unfortunate that today’s culture makes it hard for chronic pain patients to take medications, that I have to feel like I need to hide from other people, and that some medical professionals look at me like an untouchable patient. In the grand scheme of things, the medication is just one aspect of pain management for me. I continue regular physical therapy, ice, heat, bracing, mobility aids, and other assorted nonpharmacological techniques. I understand that there’s an important balance in finding the right amount of medication to take—I work closely with multiple doctors to find that balance. Even though I have the full support of those doctors, I still fight constantly with insurance and pharmacies. And I still battle with my own self-image as I combat pain every day of my life. What I’ve found over the years, though, is that being an advocate for yourself is one of the best ways to improve your mental, emotional, and physical health. And, it’s ok to need extra help. You are worthy of the best care possible, even if it means requiring medication to get you there.
Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.
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