I finally went back to work for one day, and then that night, I got appendicitis. As a result of the surgery, I developed a central nervous sensitisation condition, which includes but is not limited to vulvodynia, IBS, chronic muscle pain and shooting nerve pains that feel kind of like there’s a string of christmas lights inside you, and every time they light up it gives you a physical sensation like the noise that the game Operation makes when you hit the metal part.
Over time, these conditions then affected my hormones and mental health, so I’m also dealing with PMDD, as well as some depression and anxiety.
In October, it’ll be eight years since this all kicked off, and I don’t really see a day in my future where I won’t be dealing with at least some of these. That being said, things are actually pretty good right now. I recently started taking Cymbalta, which has been an absolute Godsend for me; it’s helped numb out my nervous system and allowed some of the other treatments I’ve been doing to actually be effective and make progress, rather than being trapped in a loop of taking one step forward and two back. It’s nice.
This week is chronic pain awareness week, and as I look back, there’s a lot I wish I’d known from the get go. Here’s just a few of them.
Don’t get me wrong here, because as a Sagittarius with an ego that positively SPARKLES when it’s given attention, I like to think I’m extremely special and a rare gem of a person. When I first developed chronic pain, I thought I’d been cursed with a super rare illness, probably because it took me two years and three gynaecologists or so to get a diagnosis. As it turns out, nope! As many as one in six women suffer from varying degrees of vulvodynia, which means it’s actually way more common than I originally thought.
I wish I’d known that the sooner I began talking about it, the sooner I would find others around me who who were going through the same thing and allow me to feel a lot less alone throughout the challenges of dealing with it all.
After doing this for nearly eight years, I have seen:
I’ll let you consider for a moment just how much money I’ve poured into the medical system in my quest to not live in pain every day of my life over the past eight years. There’s a joke about avocado toast and the housing market to be made here but I can’t seem to find it under this pile of bills and resentment.
Out of all of these people, there are two who I ADORE, a few I like, a lot who have been absolutely useless and two who I absolutely loathe. My point is, good help is hard to come by, but having a doctor who genuinely cares about your wellbeing and doesn’t just want to get you out the door and collect a cheque should not be something this rare. Although doctors are under pressure and time constraints, they need to make more of an effort to listen to their patients and not just try to shove them along if there’s more at play than the basic “I have a cold and I need a doctor’s certificate”.
Let’s go back to the two doctors I loathe for a moment. One of them was a misogynistic endocrinologist who spoke down to me, offered me no treatments, and charged me over $200 for our 20 minute appointments.
The other was gynocologist I’d waited 9 months to see in my second year of dealing with chronic pain. I told her that a certain medication made me want to die, and she refused to take me off it. In fact, she told me to up my dosage, despite the fact that I’d been on a higher dosage previously and the effects had been even worse. She also told me that we had “all the time in the world” to deal with my pelvic pain because I didn’t have a boyfriend. I suppose if I’d had a partner whose sex life was being hindered by my agonising pain, that would have been a reason to rush to fix it, so I could get back to ~servicing my man~, right?
Thinking at the time that my condition was rare and that I was lucky to have even found specialists who were familiar with them, I felt like I had no other options, and I put up with treatment that makes my blood boil when I think about it to this day.
In hindsight, what I should have done is walked out of those appointments, refused to pay for them, lodged complaints against them, and asked to be referred to someone else.
One of the most important things I’ve learned over the years is that listening to advice from doctors and specialists, friends and family is good, but listening to your body will give you the best advice for you.
Through medications with unmanageable side effects and through making plans in my day-to-day life, listening to my body gives me the information I need to balance my responsibilities with my social life, and to know when something isn’t working for me.
My body will tell me when I need to go find a second opinion instead of allowing a doctor to gaslight me, and it informs my decisions when it comes to catching up with friends for Tuesday Trivia or going home to bed at 8pm so that I can make it through the rest of the week instead of worsening a chronic pain flare up.
Here’s the thing. Chronic pain f**king sucks. Honestly, it’s not fun, no part of it is a good time. Understandably, then, it can be pretty easy to fall into a headspace where life can look pretty bleak and the future can look like a corridor where all the doors of opportunities are just slamming shut, one after the other. When one of my doctors first suggested seeking help with my mental health to assist me in coping with my chronic pain, I was angry. At the time, I felt like my only problem was the fact that I was in pain, and if they just did their jobs and fixed my pain, I wouldn’t be depressed. I didn’t want to recognise that my chronic pain was just that — chronic — and it wasn’t going anywhere anytime soon. I didn’t realise that things weren’t as simple as I would have liked, because for most people, there’s no such thing as a ‘cure’ for chronic pain. I wish I’d been less resistant to the idea of seeking help for my mental health so that perhaps I could have come to a place of acceptance earlier. This also would have allowed me to see the difference between acceptance and ‘giving up’, which is something that I’ve struggled with over the years as I’ve continued my search for a cure.
Over the years, one of the hardest challenges I’ve faced is straddling the line between allowing myself to be hopeful that a treatment will be effective, without allowing myself to put all my eggs in some new basket and expect that it will cure me forever. I’ve found that it’s very easy to fall into a cycle of researching potential treatments, setting my sights on one, attaching all my hope to it, regardless of how expensive it is, doing it, not having it be effective, plummeting into a deep depression fuelled by feelings of hopelessness, picking myself back up off the ground, and starting the cycle all over again. From opioids to CBD oil to essential oils, from pelvic floor botox to hypnotherapy and acupressure mats, I’ve pretty much been there and done it all.
Still, around every corner is someone to tell you all about their cousin’s friend’s mother-in-law who has EXACTLY what you have and completely cured themselves by doing this one crazy thing.
It’s easy to get caught up in the hype of it all. Chances are, it’s not going to cure you, but it could still be helpful to some degree, and a useful thing to add to your arsenal of treatments that help you manage, so I guess my takeaway here is to try everything, but to temper your expectations in the process.
Chronic pain turns your life on its head in a whole bunch of different ways, but inevitably, it will separate your true friends from your good time friends. You’ll learn who you can count on, who you can talk to, who will be understanding when you have to bail on plans an hour before you’re meant to leave the house, and who’ll be there for you. You’ll also learn which of your friends you can’t count on for any of those things. What you choose to do with that information is up to you, of course, but you’ll have it, whether you want it or not.
It feels strange to label something as “one of the best parts” of having chronic pain, but honestly, the bonds I’ve made with people who are also going through their own experiences with chronic pain are absolutely invaluable to me. As much as my very best friends in the world can empathise with me and are incredible supports to me, having people who innately understand what I’m going through from their own experiences is something I cherish so deeply, and I wish I hadn’t gone through the first four years of my chronic pain journey without being able to talk to anyone who absolutely, completely gets it. Although I came across my chronic pain buddies organically once I started talking about my own experiences, my suggestions for others looking to meet people with similar conditions to their own would be to reach out to people on social media, and maybe see if there are chronic pain support groups in your area.
Here’s the thing. There’s tons of things I do to manage my chronic pain and my mental health, but sometimes, all of this just starts to feel like it’s suffocating me. “Meditate! Go home and go to bed early! Don’t eat that when you know it’s going to make you feel like s**t! Get to your appointments! Make sure you do your physio stretches! Take medication, but not TOO MUCH medication!” It’s easy to feel like my life is just a series of tasks and chores I have to do in order to manage my health, with no time left in my day to actually live my life or have any semblance of fun.
One of the loops I’ve observed myself go through approximately 497 times is to start a new routine where I’m ONLY going to do what my doctors and specialists tell me, where I only take the VERY BEST care of myself and don’t do ANYTHING else. Of course, that inevitably leads to a moment where I begin thinking ‘ugh this is exactly what I DON’T want, my illness controls my entire life! From NOW ON, I am TAKING BACK control!!! I’m going to do what IIIIIII want, consequences be DAMNED!!! I’ll find a way to just deal with it and I’ll be HAPPY because I’ll be LIVING!!!’
This, of course, means that I stop doing a whole bunch of things that are helping me deal with my pain, which leads to a pain flare up, which then leads me back to a place where I switch to thinking ‘OKAY, from now on I’m ONLY doing things that won’t flare my pain up. I’ll do everything RIGHT and everything will be GREAT and I’ll just deal with it!’
One of the hardest lessons to learn through all of this — aside from anything that resembles finding a balance between these two extremes — has been to be patient with myself, and to be forgiving of myself when I decide to say “f**k it” and just do whatever I feel like in the moment, regardless of the consequences.
I’ve also learned that it’s okay to grieve for the person you used to be, and for the fact that your friends who have only known you since you got sick won’t ever be able to know that person.
“I’ll do this when my pain is gone,” is something I used to say a lot. “Once my pain is under control, THEN I’ll be able to do that”.
I wish I’d known when I was 24 that I’d still be dealing with all of this when I was sitting here, at 32, writing this article today. Perhaps then I wouldn’t sometimes feel like chronic pain stole the better part of my 20s out from under me. If I could go back and live it over, I’d get into therapy faster, and I’d try to get on with the fun parts of life while I dealt with the rest of it.
Chronic pain awareness week runs for seven of the 365 days that sufferers are dealing with it, often for years at a time. If you’re like me back when I was 24, please know that you’re not in it alone.
You don’t know how strong you are.