Anyone who lives in chronic pain knows that the symptoms run much deeper than just a physical illness. Over the years, we tell ourselves stories to make sense of such a difficult life, whether we realize it or not. We grasp at reason and order in a life that often seems chaotic and out of our control. It is all too easy to allow the physical pain to seep into our psyches, and often in a harmful and counterproductive manner. It is time we recognize these unhealthy thought patterns, denounce them as lies, and refuse to allow our lives to be dictated by guilt-ridden false narratives.
Living with chronic migraine and chronic daily headache, I have an extremely unhealthy relationship with medication. When my journey first began, I was put on the most common migraine drug: Sumatriptan. I would take the allotted 9 pills per month and I desperately needed every pill I swallowed to put an end to a debilitating migraine. When the frequency of migraines gradually increased, I began heavily researching rebound headaches. For those of you lucky enough to not be familiar with this cruel phenomenon, taking too many migraine drugs can ironically lead to more headaches. While 9 pills is the generally agreed upon safe dose, every body is different. So maybe my personal threshold to prevent rebound headaches is actually 7 or 8 pills. How can I possibly know? Perhaps I am the one causing my migraines because I’m taking too many pills. My will is weak and so this mess is my fault for popping a pill every time a I feel that pain behind my eye, instead of just toughing it out. It’s possible that if I was more responsible, I wouldn’t have had to quit my teaching job and lie in the couch, day after day, in moderate to severe pain.
A couple months after I had to retire teaching, my neurologist actually put me on daily Naratriptan (a drug closely related to Sumatriptan that just so happens to work better for me). This is definitely more than 9 a month, but my doctor assured me it was safe despite my OCD going wild. I was able to get by on this for a few months, but the questions wouldn’t stop tormenting me: “What if it’s the meds perpetuating your pain? What if you could stop the pain by just quitting the meds?” Therefore, I quit the Naratriptan cold turkey as an experiment. I was going to be tough this time. If a migraine struck, I’d look it dead in the eye and say, “So what? I can take it.” Of course, this only worked for so long before I gave up. I couldn’t take the pain, and I began seeing another neurologist.
This new neurologist gave me many samples (in addition to a prescription) of DHE nasal spray, a less common abortive migraine drug. Once again, the amount I was taking surpassed the recommended limit, but I hesitantly trusted my neurologist who said this was okay. He had even published a paper showing that contrary to popular opinion, this drug does not cause rebound headaches. So I took it a lot. However, the more I took this drug (like many other migraine drugs), the less it tended to work. My body somehow became immune to its healing powers, so once again-- this is my fault for taking it too much. The drug isn’t working because it’s my fault for being so dependent upon it. Plus, despite what my doctor said, the internet told me DHE can in fact, cause rebound headaches, so who I was to trust? It’s my fault for not erring on the side of caution and acting conservatively to protect my health.
Next was Tramadol. I had my suspicions, of course, about this drug too. My neurologist assured me it was fine, but the vastly contradicting narratives in the medical field had left me defeated and unsure of who to trust. I took it because it worked. However, when I visited an out-of-state clinic for a second opinion, I was very frankly told never to take Tramadol or any opioids for headaches because they always make the pain worse in the long run. I wanted to scream or cry after hearing this. Instead, I meekly uttered: “But what if I just take a small handful a year, like for very special occasions such as my own wedding?” His response was basically, “If you know it’s going to make your pain worse, then why would you even take one?” Well, it’s hard to argue with that, so I shut my mouth and swallowed my despair.
This isn’t even to mention the plethora of preventive drugs I’ve tried. My mom’s voice would often echo in my head throughout these years: “I don’t know if I like the idea of you taking all these drugs when we don’t even know the long-term effects.” I mean, yeah, I don’t like the idea of taking a pill every day the rest of my life either, but I’m just following the doctor’s orders. We are supposed to trust doctors...right? No preventive drug has helped me in the slightest, so these weren’t hard for me to just give up. However, it still begs the question: Is it possible my pain has gotten so bad because I’ve been filling my body with so many chemicals?
Time for the natural approach then, right? About a half a year ago, I enrolled in a highly intensive (and expensive) 12-week migraine program with a naturopathic physician. Remedies included a great diet (no artificial foods), homeopathic remedies, and herbs to repair my liver and ability to detox. One reason this program was so enticing is because I have Celiac Disease and many stomach issues. It made (and still makes) so much sense to me that the reason I have migraines is because my intestines have been damaged and unable to absorb nutrients and detox waste properly. These medications have probably just further damaged my ability to do this, so I vowed to only take Naratriptan once a week maximum and only when I really really really needed it. The western medicine doctors had it wrong the whole time, shoving me full of harmful pills while neglecting the real problem that could be solved naturally. As the failure of this program is my most recent heartbreak, it still pains me to admit that it didn’t help me in the slightest, despite my most earnest efforts and strictest adherence to “the rules.”
Now I’m just floating. I still eat an extremely healthy diet because it just has to help at some point, right? But even my resolve to do that is quickly fading into the oblivion of other things that “should have” worked, but didn’t even touch the pain. Just yesterday, I took my first Fiorcet, yet another headache drug prescribed by my family care physician. I was absolutely amazed how it worked considering I didn’t think it was a very “hardcore” drug (and considering that even Percocet has mixed results for me lately). Suddenly, I have yet another drug to figure out but almost immediately, it made me feel guilt. It helped my head, but made stomach hurt, so I criticized myself: “You said you were going to try to get rid of all this medication to help your stomach, and now look at you. Your headache wasn’t even THAT bad, and yet, you just popped a pill mindlessly.
This morning, my head was getting bad again, so I played the game you’d think was my favorite past-time: Weigh the pain-relief you crave against the guilt you will inevitably feel. What’s more important: your physical pain relief or your emotional health? You can only choose one. I had things I wanted to do today, so I took the pill, almost in a moment of defiance against my debilitating guilt. Then, because I was apparently in the mood for some good ol’ self-sabotage, I looked up the medication on the internet. Turns out, it too can cause rebound headaches-- even if you only take two a week. And I already took two in just two days! I groaned out loud. Then the attack continued: You’ve had a good week of low-pain days. You are due for bad pain day, so you should’ve just sucked it up and accepted it. Your plans weren’t very important and could’ve been cancelled. You could’ve at least spaced out the dosing instead of taking it on two consecutive days when it wasn’t totally necessary.
At this point you’re probably thinking: Wow, this lady has some issues. And yes, you’d absolutely be correct, but can you blame me? All the physical pain, the conflicting opinions, my worsening condition, medication side effects and uncertainties-- how could this not push a sane person to the brink of madness? I also may sound crazy because I have these voices stirring in my head, but this is true for all of us. We all tell ourselves certain things to make sense of our current reality. Some things are true while other things are not, but regardless, because it’s coming from ourselves, we believe it all. If I have a thought about how I am doing, wouldn’t it have to be the truth? Wouldn’t I know what’s going on in my own body and mind? Well… yes and no. On one hand, no other person knows you like you do, and deep down inside, I believe we all do know the truth. On the other hand, this truth can often get masked, suffocated, or twisted into some perverted thoughts targeted to make us miserable. The reality is, it’s not until I really sit down and think about all the things that I’ve told myself about medication and my pain, that my mind goes: Holy Moly, lady. These are some manipulative thoughts. You need to nip them in the bud ASAP because they are leading you in a trail to psychological self-destruction.
So that’s what I’m doing-- nipping these bad thoughts in the bud. I’m writing on this on a complete whim, actually. After my usual downward spiral of self-loathing this morning, a thought popped into my head so randomly and wonderfully, it is as though it came from an angel:
Lindsey, you don’t deserve to be in pain.
Well, duuhhhhh, you may be thinking. But this realization was so beautiful and random, that tears are clouding my eyes right now as I relay it. The problem with feeling guilty for taking meds that “maybe you didn’t really need” is that the underlying premise is: Your chronic pain is your fault. You deserve this pain, which is why it’s a sign of weakness when you take a pill-- because you can’t handle the thing that you deserve. While I typically get annoyed at anyone who uses all caps in an essay, it seems strikingly necessary here: THIS. IS. CRAZY. TALK.
I think when you deal with pain, day-in and day-out, it really just becomes apart of you. Because the physical pain is always with you, it seems natural to hold onto the emotional pain too, right? Misery loves company (or something). Because those in chronic pain often have such little control over the physical symptoms, it’s easy to mix them in with the emotional symptoms and assume we have little control over these too. I don’t believe this for a second. We may not be able to completely eliminate the emotional pain as that is a very real and messy thing. In fact, many of us in pain also suffer clinical depression and anxiety, so it’s not like we can snap our fingers and make it disappear because we want it to (Obviously, I’m not a psychologist, and am therefore in no way qualified to give you advice on how to cope with these specific conditions). However, we can be real with ourselves and take a cold, hard look at the narratives we tell ourselves, and boldly pluck out the parts that are lies. Even when we still feel the lies are true, we can consistently remind ourselves that just becomes something feels true, doesn’t mean it is true. Dark feelings, albeit very real and painful, are highly subjective and do not dictate reality. Here’s a tip to get you going: if a thought is making you overwhelmingly full of despair, it’s probably a lie. Now it’s your task to find out why and reject it as such. I know it’s a process, but if we can objectively analyze our thoughts as a curious outsider, this can, at the very least, slow down the process of internalizing self-destructive narratives.
If you are in chronic pain, rely upon medication, and are reading this: your physical pain is not your fault. Taking medications does not mean you’re weak and “can’t handle a little pain.” One important thing to keep in mind, is that there are other aspects to your health other than physical that you may be helping when you take a pill. For example, if I have to take medication because I have plans with friends and am getting a bad migraine, I’m doing two positive things: (1) allowing my body to feel physical relief, and (2) contributing to my emotional/psychological health by allowing my body to feel well enough to be social and have friends. Don’t let the guilt of taking a pill take away from these victories.
Of course, this doesn’t mean I should just throw all caution to the wind, and take as much medication as possible. The reality of rebound headaches and side effects are still real, and it’d be a huge disservice to myself to deny this. What it comes down to is trusting myself. I know I am an intelligent, reasonable adult who can make wise decisions regarding how to manage pain and medications. I know I have my own best interest at heart and I’m simply doing my best to live the fullest life I can. I may make mistakes or get it wrong sometimes, but it’s completely irrational to feel guilt for my earnest attempts at a healthy life.
The Mighty, an online community that supports those suffering with illnesses, has been talking a lot about “self-care” lately, encouraging writers to share self-care tips that work for them. When I first read these encouragements, I bit my lip, racking my brain for a good tip, and nothing great came out. I can think of some obvious, tangible things I do for my headaches and body pain: ice packs, my shoulder massager, deep breaths, etc. And while these are helpful tips, it just seemed disingenuous for me to tell people that I get true self-care from taking an epsom salt bath. No shade to those who do rely upon these simple measures-- if they work, more power to you! But for me personally, I think in many ways, my mind and soul need far more self-care than my body... even in the midst of profound physical pain. Being kind to yourself does include taking these basic steps to promote a restful, healthy body-- absolutely, 100%. But in some cases, it must go deeper than that. To me, self-care is taking this current journey through writing. It means careful thought and introspection. It means identifying the thought patterns that leave me emotionally destitute, shining a bright light to expose the flawed logic, removing such lies from my own narrative, and and regaining control of my life.
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