Having an Invisible Illness: Idiopathic Arthritis
In my nearly 16 years of being diagnosed with a chronic illness, I’ve had a few people, perhaps concerned, perhaps in morbid curiosity, ask what it’s like to navigate this illness. Some background: One day when I was 12 years old, I woke up feeling feverish, achy all over, and with just a general feeling of malaise. Days and weeks went by and the pain got worse, my joints began to swell and lose range of motion.
Even worse though was the barrage of clueless doctors and endless tests to endure as my family and me tried to figure out what was happening to me. After about six months of confusion and little answers (not to mention, excruciating pain), I was finally referred to a rheumatologist for children who diagnosed me with Juvenile Rheumatoid Arthritis (now called Juvenile Idiopathic Arthritis) of the polyarticular type (meaning many joints are affected, not just one or two like in most cases).
In the time it took finding my diagnosis, I had lost most of my mobility, independence and ability to care for myself. After my diagnosis, it was about 7 months before I was able to regain my mobility and independence, due to medication and intensive therapy. The arthritis went into remission for about 15 years. Things were pretty good. Not completely back to how I was before, but much more bearable.
Then, late 2017, without warning, I started to experience pain, swelling, and loss of mobility in my joints again. And I’ve been fighting this flare up ever since. It’s just now reaching a point where it’s barely manageable, as my team of medical professionals haven’t yet found the right regimen of medication to get the arthritis back in remission. And I’m not going to lie. It’s an everyday struggle. I never know what each day will bring, which joints will be affected day-to-day, or just how much of my mobility may be lost that day.
As you might imagine, this makes for a pretty unpredictable and tumultuous life. So I wanted to outline what’s it’s like living with a (mostly) invisible illness on a daily basis.
Physical
It hurts pretty much all of the time which makes it harder for me to work or do what I like to call “normal people activities”. On good days it’s a nagging or aching pain that I usually can ignore or manage with over-the-counter painkillers. On bad days, the pain becomes more persistent or the swelling and stiffness more pronounced, in which case, I lose my independence. My family is pretty great about assisting me when I need it, but it can sometimes be embarrassing to have to depend on someone for things most toddlers can do.
I guess the closest thing I can compare arthritis pain to is having screws twisted into your joints. Sometimes it feels like a constant jackhammering. Once the pain gets to the point where I’m questioning the point of living (oh yeah, suicidal thoughts happen), that’s usually when I go to the ER.
Medical Perception
While the pain and swelling can be debilitating, even more devastating is the loss of agency. Perhaps it’s the realization that maybe I never had much agency to begin with especially as a Black woman. Black women are the most likely to be ignored, dismissed or mistreated by medical professionals, all across pay grades and economic backgrounds. My 15-year spanning relationship with hospitals and medical personnel is nothing if not a testament to that fact. We’re the most likely to be seen as drug-seeking and the most likely to have our pain ignored.
So you see how it can get complicated going to the ER for unbearable pain. That coupled with the fact that the Opioid Crisis/Panic has made it much harder for people with chronic pain to have their pain managed. Oftentimes a doctor will find a medication that actually works for me, only to switch it out for something else to reduce the likeliness of addiction, something else which may or may not work to reduce the pain. Even worse I may not be believed at all and turned away. This has happened before and is usually followed by a few days of agony until I can get in to see my primary doctor. Not fun.
Emotional repercussions
Sometimes it’s like watching from a half-life, witnessing others deal in blessed mundanity, not having to worry for this medication or that appointment, and most of all just getting up and without thinking, without planning, just executing.
It’s always having it in the back of your mind in case someone asks for something you can’t deliver on. It's always being on edge, the constant hanging irrational fear not only that you’re lazy and worthless, but that others will realize it too-- thoughts brought to you by our great capitalist you’re only worth what you can provide society.
It’s saying yes to things knowing all too well the repercussions that will come with overextending yourself. It’s planning double and triple, backwards and forwards because you can’t walk that well and you have to be prepared for anything. It’s mostly like having a child to constantly nurture, and plan for and around, but no one else can see this child and even worse, many even doubt the child’s existence.
It’s censoring the things you say, smoldering the fires of truth to protect your space, compromising passion for safety. It’s unwillingness to show vulnerability, and immense shame and embarrassment when it cannot be contained.
And no one fully understands, is the worst part. Sometimes it really feels this journey must be felt for tentatively bit by bit in the terrifying dark.
Whoa, that got morbid. Ha. But seriously.
Oddly enough, it’s hasn’t been all bad. Having this illness has transformed me into an extremely empathetic and compassionate person. I’ve met and had great conversations with people from many different backgrounds and perspectives that I may not have encountered otherwise. And I know it might sound cliche but it’s also taught me to slow down and really experience life. Sometimes good days can be few and far between, so when I am having a good day I savor it. I soak it all in. I impress every memory into my mind like a footprint, saving them up for those days when I’m convinced that nothing exists but me and pain.
Even worse though was the barrage of clueless doctors and endless tests to endure as my family and me tried to figure out what was happening to me. After about six months of confusion and little answers (not to mention, excruciating pain), I was finally referred to a rheumatologist for children who diagnosed me with Juvenile Rheumatoid Arthritis (now called Juvenile Idiopathic Arthritis) of the polyarticular type (meaning many joints are affected, not just one or two like in most cases).
In the time it took finding my diagnosis, I had lost most of my mobility, independence and ability to care for myself. After my diagnosis, it was about 7 months before I was able to regain my mobility and independence, due to medication and intensive therapy. The arthritis went into remission for about 15 years. Things were pretty good. Not completely back to how I was before, but much more bearable.
Then, late 2017, without warning, I started to experience pain, swelling, and loss of mobility in my joints again. And I’ve been fighting this flare up ever since. It’s just now reaching a point where it’s barely manageable, as my team of medical professionals haven’t yet found the right regimen of medication to get the arthritis back in remission. And I’m not going to lie. It’s an everyday struggle. I never know what each day will bring, which joints will be affected day-to-day, or just how much of my mobility may be lost that day.
As you might imagine, this makes for a pretty unpredictable and tumultuous life. So I wanted to outline what’s it’s like living with a (mostly) invisible illness on a daily basis.
Physical
It hurts pretty much all of the time which makes it harder for me to work or do what I like to call “normal people activities”. On good days it’s a nagging or aching pain that I usually can ignore or manage with over-the-counter painkillers. On bad days, the pain becomes more persistent or the swelling and stiffness more pronounced, in which case, I lose my independence. My family is pretty great about assisting me when I need it, but it can sometimes be embarrassing to have to depend on someone for things most toddlers can do.
I guess the closest thing I can compare arthritis pain to is having screws twisted into your joints. Sometimes it feels like a constant jackhammering. Once the pain gets to the point where I’m questioning the point of living (oh yeah, suicidal thoughts happen), that’s usually when I go to the ER.
Medical Perception
While the pain and swelling can be debilitating, even more devastating is the loss of agency. Perhaps it’s the realization that maybe I never had much agency to begin with especially as a Black woman. Black women are the most likely to be ignored, dismissed or mistreated by medical professionals, all across pay grades and economic backgrounds. My 15-year spanning relationship with hospitals and medical personnel is nothing if not a testament to that fact. We’re the most likely to be seen as drug-seeking and the most likely to have our pain ignored.
So you see how it can get complicated going to the ER for unbearable pain. That coupled with the fact that the Opioid Crisis/Panic has made it much harder for people with chronic pain to have their pain managed. Oftentimes a doctor will find a medication that actually works for me, only to switch it out for something else to reduce the likeliness of addiction, something else which may or may not work to reduce the pain. Even worse I may not be believed at all and turned away. This has happened before and is usually followed by a few days of agony until I can get in to see my primary doctor. Not fun.
Emotional repercussions
Sometimes it’s like watching from a half-life, witnessing others deal in blessed mundanity, not having to worry for this medication or that appointment, and most of all just getting up and without thinking, without planning, just executing.
It’s always having it in the back of your mind in case someone asks for something you can’t deliver on. It's always being on edge, the constant hanging irrational fear not only that you’re lazy and worthless, but that others will realize it too-- thoughts brought to you by our great capitalist you’re only worth what you can provide society.
It’s saying yes to things knowing all too well the repercussions that will come with overextending yourself. It’s planning double and triple, backwards and forwards because you can’t walk that well and you have to be prepared for anything. It’s mostly like having a child to constantly nurture, and plan for and around, but no one else can see this child and even worse, many even doubt the child’s existence.
It’s censoring the things you say, smoldering the fires of truth to protect your space, compromising passion for safety. It’s unwillingness to show vulnerability, and immense shame and embarrassment when it cannot be contained.
And no one fully understands, is the worst part. Sometimes it really feels this journey must be felt for tentatively bit by bit in the terrifying dark.
Whoa, that got morbid. Ha. But seriously.
Oddly enough, it’s hasn’t been all bad. Having this illness has transformed me into an extremely empathetic and compassionate person. I’ve met and had great conversations with people from many different backgrounds and perspectives that I may not have encountered otherwise. And I know it might sound cliche but it’s also taught me to slow down and really experience life. Sometimes good days can be few and far between, so when I am having a good day I savor it. I soak it all in. I impress every memory into my mind like a footprint, saving them up for those days when I’m convinced that nothing exists but me and pain.
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