10 Things I Wish I Knew Before I Became Chronically Ill
The fall has always been a time of year I happen to love. There is something about the crisp weather, pumpkin spice lattes, and cozy clothes that make me happy. This year, however, September will be a bit more...trying. Over the past 8-years, I've had to contend with the anniversary of my beloved father's passing on September 8th. However, this year, I also have to contend with the fact that both of "My Boys" (my two loving dogs, Louie, 14 and Guch, 13) also passed last year around this time.
As I started to tally all that has gone wrong in my life during this time of year, it struck me that yet another anniversary was quickly approaching...September 22nd...the day 11-years ago my life was forever changed by endometriosis, and it's insidious byproduct, chronic pain. For better or worse, I couldn't help thinking how much further I would be if I had known some of the things I know now about chronic illness.
So, in an attempt to prevent you from some of the pitfalls of being "new" to chronic pain and/or chronic illness...I compiled a list.
1. Not everyone is going to come with you.
I believe this statement applies to life in general, but when you struggle with chronic pain and/or chronic illness some of the people who start the journey with you may not end the journey with you. For some of us, this may be family, spouses, or best friends.
It can be extremely unsettling, and after a few heartbreaks, we begin to shy away from incorporating people into our lives. This idea is especially true when our friends start taking the life path we thought we were going to have and we veer off into a different and unknown direction.
Look, chronic pain/chronic illness is not for the fainthearted. It takes strength, grit, courage, patience, creativity, and some serious perseverance. Chronic pain/chronic illness demands a lot from us...and consequentially, it's a lot to ask of our friends and family. Unfortunately, we don't have a choice in the matter...but other people in our life do...and when they choose to "opt-out," it can be immensely painful.
The truth of the matter is that those people who choose not to join you on your chronic pain/chronic illness journey likely came into your life for a reason...and left for a reason. This is a hard concept to apply when the people who don't stick around mean a great deal to you...but allowing them to freely go, no matter how long they've been a part of your life story, makes room for people who has what it takes to be in your life.
Friends and family who are truly accepting of your illness may be few and far between...but I've learned that quality is much more important in life than quantity.
2. Not everyone is going to understand.
This is an entirely different concept than point #1. In the first statement, I refer to people who choose not to follow your journey. However, in point #2, I'm referring to people who decide to come along "for the ride"...but can't (or won't) understand your plight. I've said it once, and I'll repeat it...people who aren't in pain...can't understand pain.
I was reminded of this fact the other day when speaking to one of my friends. Though we've known each other for a while, we've only become closer in the last year. She's known all about my endometriosis...but I didn't realize how little she actually understood. I was chatting with her the other day, and this pain from the depths of hell came out of nowhere. Instinctively, I yelled, "OW!" She said, "Oh, it's your cramps again?" Slightly caught off-guard, I said, "Well, it's just endo pain." She replied and said, "So the cramps just come on like that and then go away?" Now confused, I responded by trying to be a little more explanatory. "They're not really cramps and the pain is always there but sometimes it feels as though someone is taking a fondue skewer and jabbing it in my pelvis (yep, it's true). In other words, it's just a pain that is more intense." And she said, "You're lucky...because when I have cramps, I'm constantly in pain for days, so it's kinda good that the pain comes on and leaves quickly like that."
I felt like screaming, "it's not cramps...and it does hurt...like all of the time!" But, being a veteran chronic pain sufferer, I just said, "I'm sorry, that must be awful." Why? Because I truly meant that I felt badly, she experiences that. I also knew that she genuinely meant well by trying to relate and understand, she sincerely cares for me, and she honestly can't understand what I'm going through...and that's okay.
The people who choose to travel with you on your journey with chronic illness may not understand, and that is okay. As long as they're supportive, understanding, caring, and patient - and you both bring value to one another's lives...consider it a win-win.
3. Bad days are bad and good days are good...and sometimes bad days turn into good days and good days turn into bad days...And...we're just as confused as you are as to why.
This one...is a conundrum for both you... and us. Chronic illness sufferers have to walk this fine line of explaining our illnesses so others understand...but not so much that we are doing it for "attention" and not at all because then...we're obviously not sick and doing it for..."attention." WTF?!
I've spoken about this point several times... mainly because I suffer from a disease whose moniker is known as an "invisible illness." In other words, people can't see my illness - I don't look sick - I look healthy and vibrant so no one would know how much pain I'm in on a daily basis. Which undoubtedly, is confusing to those who aren't in our bodies; Especially those who see us doing one thing happily one day...and the next day laying in bed suffering...or even worse...one thing happily one hour...and the next hour laying in bed suffering.
Here's the deal: as chronic illness sufferers, we have the same drive, want and need to "keep up with life" - only, we are tasked with allocating a minimal amount of energy to it all, every day.
Sometimes, we're pros and allocating this exceptionally small energy correctly, other times, we know we don't have the fuel to attempt it...and most times, we know we're running on fumes, and we're just pushing ourselves like hell, so quite frankly, wherever we stall out...is where we stall out.
I can promise those of you who don't suffer from chronic illness and/or chronic pain that none of it is intentional but the more we're made to feel like it is, the worse the end result will be.
4. Regardless of exhausting every possible therapy or treatment for your pain...someone has a sister who has a once-removed-uncle who has a brother whose cousins wife did this ONE thing that worked that YOU must try!
Nothing used to make me crazier than when I shared my story with someone, they inevitably knew someone who also had the "same thing" who did something like, take Motrin and miraculously became better. Frustrating right? I don't know about you, but you feel like screaming, "seriously?!"
However, here is the thing I know now: people sincerely have good intent and genuinely want to help. You're not reacting to the simplistic nature of their "advice," you're reacting to the fact that you feel they obviously don't understand the severity and uniqueness of your health challenge. Let that sink in for a second...because I promise it is the truth.
So the next time someone goes to give you some off-the-wall advice that you've likely heard 10,000 times...just thank them and know they authentically care.
5. You need to be your own medical advocate.
I can't stress this enough; In fact, teaching my clients how to become their own medical advocate is one of the cornerstones of the Kairos Chronic Pain Coaching program. Look, physicians want to help - the Hippocratic Oath even states: "Do no harm," but the truth of the matter is that blindly trusting anyone in this life isn't the smartest or healthiest thing for you.
In other words, in order to trust the physician or treatment plan, we first must understand that we can trust the physician or treatment plan. And... for us to understand (for those of us who aren't physicians), we need to do some good ol' research...and THAT takes time...a lot of time.
Becoming your own medical advocate is an important step to take in your chronic pain/chronic illness plight. It will be the difference of feeling like everything is out of your control vs. feeling IN control. However, like most things in life, this step takes time and practice.
A great first step is to begin understanding your illness backward and forwards - or the reasons why your physicians have run the tests they've run. Questions will naturally arise that will prompt you to want to ask your physicians. And then...do it! Ask away! Don't feel like any question is too stupid.
6. Believe in something greater than yourself.
I have always been spiritual and not necessarily religious. I was raised Greek Orthodox, which is closely related to Catholicism. However, in my 20's I deviated from "organized religion" and focused more on my walk in faith. In other words, I found the "structured prayer" and formal community to be noisy - instead I wanted to have a personal and authentic relationship with God.
In our practice, we discuss healing mind, body and spirit. I often get asked if it's necessary to be religious to work with KCPC. Not at all. The way we define healing your spiritual self is by recognizing that your spiritual self simply means your "higher self" - whether you define that as God, Jesus, Buddha, a Higher Power, Collective Unconscious, or The Universe, etc., is your personal choice.
Here's why we think it's important: The mind is a funny thing- it will keep asking a question until we give it an answer. So developing and cultivating a relationship with a Higher Power, regardless of whatever that may be, is an important step in your chronic illness story because it allows you to make peace with what has happened to you. Believing in something greater than yourself allows you to accept that we don't have answers to questions the mind will ask like, "why did this happen?" or "why me?"...and that's okay...because there is a greater purpose for it.
To read more about KCPC's definition of spiritual body, please click here.
To watch our YouTube video where I delve deeper into this subject matter, please click here.
7. Do what works for you (regardless of what others say...well, sort of).
I remember when I first was diagnosed with endometriosis, we did our best to research everything before each doctor's appointment so we could ask more informed questions. One of the topics we were curious about was vitamins and supplements to mitigate pain.
At the time, I had 3 different physicians, and so we asked each one what they thought about the "anti-inflammatory" regimen...and, we got 3 different answers. WTF?! So what do you do?
Now, I am an advocate of traditional western medicine. I believe in science, BUT I also believe in (some) alternative medicine. Here's why: I have spent too much of my life battling chronic illness to be close-minded in thinking that only one form of treatment/therapy is effective in treating pain.
So, I decided to try it and see what I thought for myself. Before I explain the outcome, I feel a PSA in necessary. A LOT of pain management is about...time...which none of us want to hear because pain sucks so we want it gone yesterday...but it's the truth. Think about it...it takes time for a medication to work (even if it's an immediate release you still need to wait the 25-40 minutes it takes to absorb in your system), it takes time to recover from surgery, it takes time for treatments, therapies, and protocols (western or eastern medicine) to work.
A few weeks after trying the "anti-inflammatory" vitamin/supplement regimen, I recognized enough of a difference to continue. Now, 11-years later, regardless of what information and/or opinion is published about vitamins and supplements (provided the information isn't warning against dangerous or lethal side effects) I ignore it - because I know what works for my body.
8. Mental health plays as big as a role as physical health does.
I wish someone told me to take care of my mental health as much as my physical health when I first got sick. No one really tells you that your life changes overnight, that depression and anxiety set in quicker than you realize your limitations, and the things that once defined you, no longer can or will. And... it sucks.
I loved my life before chronic pain - I was in my 20's, newly married, healthy, and happy. I had the world at my fingertips, a career to build, and endless opportunities knocking on my door...and then...I didn't. Suddenly, I was going to doctor appointment after doctor appointment, on and off a million medications, and stuck in bed from intolerable lethargy and agonizing, wincing pain; It was all like a horrific dream. Days turned into nights and suddenly, weeks went by, and I hadn't moved. The world was continuing on around me...but mine had effectively stopped. All of the coping skills I had depended on to get me through difficult times just weren't available - I could barely walk down to the kitchen...how the hell was I going to run 5 miles?
When your body fails you - your mind has a tendency to follow. I tried picking up new hobbies like studying theology and knitting...but I missed my old life...my old self so much that it almost hurt more than the physical pain I was in. It didn't take long to become bitter, frustrated, angry and deeply saddened...and the more those feelings set in...the more the good things in my life slipped away...which fueled more darkened thoughts...which...well...you get the idea.
So here is my humble two-fold advice I can safely recommend based on my own experiences:
1. No matter where you are in your plight with chronic illness/chronic pain, make sure to have a qualified, trusted mental health professional laced closely into your treatment plan.
2. Understand that you can't duplicate or recreate who you once were before you got sick...BUT...you can redefine yourself, your passions, your hobbies...and your life's trajectory.
9. Caregivers need just as much care as the identified patient.
This was one of those "hindsight is 20/20" lessons. During the first half of my illness, I was married and seemingly overnight, our roles changed. Consecutive surgeries and other health complications left me bedridden for almost 2-years. What I used to do in our marriage, I was no longer able...which meant it all fell onto my spouse's shoulders. Suddenly, the relationship wasn't 50/50...it was more like 95/5...and after a few years of constant stress, lack of sleep, pressures of building a career among the other crap Life hands out on a daily basis...we broke...more like...exploded...scattering emotional debris everywhere. (I mean, I could keep going...but you get the picture).
It wasn't until I attended the chronic pain recovery program (a 30-day, in-patient program designed specifically for chronic pain sufferers where we were taught holistic coping strategies) that I learned that the identified patient (the person suffering from chronic pain/chronic illness) is just half the battle. In other words, the caregiver needs just as much care as the sick person does. Often times caregivers contend with something called, "caregiver burnout syndrome" where the effects of physical mental and emotional exhaustion converge, creating stress, insomnia, weight gain, anxiety, depression, and a host of other physical and psychological symptoms. Caregivers often don't notice that they are experiencing burnout, and often times are at risk of becoming sick themselves.
So what do you do? If you're new to chronic pain/chronic illness, know that your caregiver is also a patient and that patient will need the same amount of care as you. Care like, a healthy diet, sleep, exercise, and mental health support. If you are a veteran chronic pain/chronic illness sufferer with a veteran caregiver at your side, encourage them to get a wellness check by their primary care physician. They will run tests to evaluate their physical health and will most likely promote a mental health checkup as well. Though you may rely heavily on your caregiver, make sure to emphasize that you want them to take time for themselves, each and every day. Whether this means catching up with friends, going to a mental health appointment, exercising or just sitting in a quiet room, know that the time caregivers take for themselves is time they will eventually be able to give back to you.
10. Being sick is a full-time job.
I discuss this notion on our company's website. (You can click here if you're interested in reading about this concept further [just click on "interdisciplinary model"] in the menu to the right-hand side of the page.)
I call this "The Chronic Pain Cycle of Diagnosis + Treatment," which postulates that getting a diagnosis is just the beginning (which is no easy feat in the first place!) of a very, very long road. Think about it this way: We have first to figure out what specialists to go to, then, undergo the testing that each require, gathering and sending the medical records to "second opinion" physicians, agreeing to surgical procedures (and then recovering) all to eventually end up feeling like a lab rat because of the plethora of medications you've been on and off in a matter of weeks.
Exhausting, no? This all, of course, excludes coordinating and attending doctors appointments, pharmacy runs, required blood work, pre-op tests, and post-op visits. Seriously, who wouldn't want to throw their hands up in the air? Here's the worst part: None of this includes the work it takes for you to be your own advocate. (Refer to point #5)
For a lot of chronic pain/chronic illness sufferers, making our illness a full-time job just isn't possible...because we already have a full-time job...or we are parents...or we are too sick...or... we have jobs and are parents and are too sick. Now what?
Do what you can to cut out unnecessary errands for both you and your caregiver - for instance, most pharmacies have programs that allow medications to be auto-renewed and even mailed directly to you. Grocery stores also have delivery services that you can participate in - take advantage of them. Have a calendar of the month's doctor's appointments and see what you may be able to condense into one day. Most of all, keep a binder with your current medical records, list of medications, doctors appointments, questions that arise, etc. so that both you and your caregiver can reference important information easily. It will seem like more work in the beginning, but overall will save you a ton of time and most of all, feel like you are in control of your illness.
Christina H Chororos founded Kairos Chronic Pain Coaching in the fall of 2017 after obtaining her Integrative Wellness Life Coaching certification from the Integrative Wellness Academy.
She is a decade-long deep infiltrating endometriosis sufferer, speaker and, suicide prevention + chronic pain patient advocate.
For more information, please visit kairoschronicpain.com