Please forgive the clutter under the female’s desk. It’s very difficult for her to get under there to clean. Earlier today, we brought up health problems, life, the universe, and generally everything. Someone commented about how the female’s symptoms were in line with fibromyalgia.
This is ridiculously common. We can’t shake a stick over how many times people automatically assume pain, anxiety, and depression somehow equate to suffering from fibromyalgia.
We’ve, frankly, have had it with this stance, and we’re about to burn it to the ground with some science.
Fibromyalgia has become a dumping ground of ignorance, which is very bad for those who suffer from it. It discounts the actual syndrome. Someone who suffers from chronic pain does not necessarily have fibromyalgia. In fact, most chronic pain sufferers do not have it, and they’re more likely to be inflicted with cancer.
Yeah. That’s a pretty shitty reality.
Fibromyalgia isn’t really understood all that well yet, it’s horrifically difficult to treat, and often has mysterious underlying causes. It prevents diagnosis of other problems, too.
Fibromyalgia sucks. Nobody wants that diagnosis. Patient abandonment is a huge problem with fibromyalgia because it is so difficult to treat successfully. Doctors just don’t want to bother.
For the sake of diagnosis, never suggest fibromyalgia first. Fibromyalgia should be the last thing attempted for diagnosis, especially in the US health care system due to the high rate of patient abandonment.
It gets worse.
Fibromyalgia is not the king of chronic pain, it isn’t even the most predominant cause of chronic pain, and it’s time to sit down and dispel some myths about chronic pain, invisible illnesses, and mental illnesses.
Chronic pain is a catch all phrase for ‘I hurt all the damned time for undisclosed reasons.’ When someone says they suffer from chronic pain, one of the worst things you can do is automatically suggest that they suffer from fibromyalgia. Please stop it. Stop discounting chronic pain. Stop assuming people have a really rare syndrome and adding to the panic and worry of being chronically ill. By going “Fibromyalgia!” you’re discounting the person’s suffering. Seriously. You are. You’re also discounting and belittling those who do suffer from fibromyalgia while you’re at it.
You may not mean to, but you are.
Please, please stop. If you don’t know what sort of chronic pain someone is suffering from, ask them first.
So many chronic pain patients have undergone lengthy diagnosis processes and know exactly what is wrong with them.
Here’s the female’s list:
1: Scarlet fever. She had this as a child, grade 5. It has damaged her heart and circulation system. As such, things like exercise are brutally difficult and often painful.
There is no cure. She can exercise, but it is a slow, painful, and brutal affair. Improvement happens at roughly a quarter of the pace of healthy humans who do not suffer from damage from a severe disease.
But let us repeat something: there. is. no. cure.
This is but one facet of the chronic pain story.
2: severe tendonitis.
This does have a cure, but it must wait until the female is fully vaccinated against COVID. For now, it is daily and relentless chronic pain. Typing is fairly low on the pain scale, but it still hurts. It always hurts. It always hurts.
That is the nature of chronic pain.
3: defective spine / neck.
This one is the source of migraines and many, many chronic pain problems.
There is no cure. The location of the problem is inoperable, and the PT and other treatments basically ‘keep it tolerable.’ That’s the best the female can hope for.
For the pain to be tolerable.
4: an elevated rib.
This one is mostly harmless, but it can flare can create pain sources. It’s one of those oddballed additions to the chronic pain chart.
Unfortunately, it can work in conjunction with the spinal defect. When it does, it equals migraines and pain, pain, pain.
Chronic pain is simply the state of being in pain all the damned time. There is always a cause for the pain. Always.
But you need to ask, not assume.
Chronic pain is common.
Fibromyalgia is rare.
5: busted knees from an accident.
The female is clumsy at times. The female dropped off a flight of stairs directly onto her knee cap. Doo doo doooo doo doo dooo do doooo Pop! Goes the Kneeeecap!
Unfortunately, thanks to straining the other knee bearing all the weight for months, the other knee cap is also pooched.
The female did not ‘need’ surgery. But the knees are pooched.
Yeah. That. One day, the female will need a single or double knee replacement. She is too young. Exercise can kinda sort of help, but the exercise fucking hurts.
6: Anxiety and depression.
These are not the cause of chronic pain, but the chronic pain definitely feeds both of them, and when you’re already beaten down because of relentless pain every day, this is a terrible, horrible combination.
Worse, people with chronic pain can develop anxiety and depression because being in pain all of the fucking time really fucking sucks.
The female’s fucking amazeball doctor has made the anxiety and depression bearable. The female’s doctor is an amazing human who tries hard to find solutions for difficult problems.
Let’s showcase a day in the life of the female:
1: The Time of Sleeping becoming the Time of Waking.
On the chronic pain front, the mornings are often the worst. Overnight, everything that’s hurt, which is elbows, knees, neck, and back… tend to hurt more because they’ve stiffened up overnight. The female is a quiet, still sleeper. This means that everything stays in one position often. Upon waking, everything that was still really protests about moving.
Frankly, it’s horrible. On a good day, it takes one try for the female to lurch out of bed and limp to the bathroom before going in search of the painkillers.
Yes, with rare exception, the female’s day starts with painkillers, to address the tendonitis, the knees, and the other oh holy fuck why does this hurt so much pains associated with going from not moving to moving.
2: Ahh, that’s a little better. The Time of Medications.
In reality, the morning dose of painkillers can get the female through the day okay. She puts on the braces, or she adjusts them if it was bad enough she wore them to bed, and she settles in to go to work. The pain has gone down from ‘ready to cry’ levels to ‘eh, it’s fine, everything’s on fire, but she’s got this!’
There are days where in reality, that answer is actually “She can’t cope with this anymore, why is she even here? What did she do to deserve this?”
That’s when the anxiety/depression bite extra hard, humans. When she’s been beaten down already.
She has a rattly pill that helps with this that she takes every day. It does help a lot with the Beast.
She writes to escape reality just as much as you read to escape reality. Working gives the female a purpose and a reason to endure.
But we will not lie to you. This is exhausting. Chronic pain is exhausting. Chronic pain is relentless, it is ugly, it is ever present, and it colors every aspect of the female’s life.
Another reality is this: Princess and I are therapy animals. That is our purpose in our household. We are eased into being support animals for the female when the pain is bad and she needs a ground. We serve time on her lap and purr for her, because this helps.
But at the core, we’re therapy animals. We don’t wear vests and we don’t leave home, but in the household, that is how we function. We are taught to support, and I was picked because of my generally loving nature, which is a needed trait in a cat that needs to serve in a support role.
The female likes dogs, but a dog is out of the question. The dog cannot walk itself, and the chronic pain is real, and the male cannot always walk a dog. Therapy cats are a better choice for the household than therapy dogs.
But therapy pooches are good, too.
(But seriously, a 685 square apartment isn’t really a good choice for a dog. At all. Where us felines are happy to take up whatever space is available. On one of our four hammocks or two cat trees… or on a lap, or at the female’s feet… or in bed, warming the blankets.)
When the humans came to the United States and had to send two of their other cats to live with the female’s mother, Tia the Majestic and Princess were selected to go California for one reason alone:
They were the therapy cats. Smoke and Lily were very loved pets, but Tia and Princess served as the therapy animals.
(No, there was literally no option to be able to take Smoke and Lily to California. It was impossible. The law would not allow, and because we immigrated to California from Canada, we had zero flexibility in terms of doing things like sneaking pets across the border. If you can’t say anything nice, don’t say anything at all.)
It boils down to this:
Chronic pain is hard. And chronic pain is so often discounted by just about everyone, because it’s really hard for those who don’t suffer from it to understand the emotional wear and tear associated with hurting all of the time.
3: It is the Time of Sleeping… maybe if she takes a dose of the pain killers, it will keep the Time of Waking from hurting as bad–or at least help her fall asleep. Mostly help her fall asleep.
She is used to the Time of Waking being made of pain.
For the record, it usually takes approximately an hour for the female to be able to get out of bed. She has a routine. It involves making sure the knees and elbows get as warm as possible before trying any significant movement. The warmth helps keep them from being as painful.
Then she makes sure not to move her neck much. The neck is getting better, but it’s still not good.
This is life, every day. Rarely, the chronic pain is like a one.
On those days, she cries. Mostly from relief, but she cries all the same. Pain free days–or days where it’s only a one, two, or a three? These are special.
Her average day closer to a four or a five.
Yeah. Pain sucks, and so does COVID, because if not for COVID, she could get back to pain days of 1-3 fairly consistently, but it is not the worth the risk of contracting COVID getting help for some of the problems.
And yes, that is on her doctor’s advice. And for the record, the female will fucking fight you if you say anything bad about her doctor.
The female’s doctor is fucking amazing.
The female’s doctor removed an entire source of chronic pain and protected that precious medication and found a solution to the side effect that might have stopped the working treatments. Without the female’s fucking amazing doctor, this would be worse.
Yeah. That’s not fun.
Fibromyalgia is a type of chronic pain, and it sucks. It often is triggered by foods, and your nervous system freaks the fuck out and triggers pain here pain there and pain everywhere.
This is only one small fraction of chronic pain. (Note: this is not a comprehensive explanation of fibromyalgia. If you want to learn more, hit google and use a reputable site like the mayo clinic.)
It is estimated that 2% of the US population suffers from fibroymalgia.
Now, let’s discuss another source of chronic pain: cancer.
It is estimated 38% of those in the United States will, at some point, suffer from some form of cancer. Cancer causes chronic pain.
Now, take a very close look at those numbers. Let’s break it down. There are 100 people. 2 of them have fibromyalgia. 38 of them will, at one point, suffer from chronic pain stemming from cancer and cancer treatments. (And fortunately, if their treatments are successful, the chronic pain should go away.)
The female’s father died from cancer. The chronic pain associated with cancer is no fucking joke. It’s a horrible way to go out.
Back to our cookies. At current, it is estimated that 20% of the United States population suffers from chronic pain. Only 2% of those people are inflicted with fibromyalgia.
Fibromyalgia is not common, and it should not be the frontline offense in keyboard warriors attempting to diagnose others.
Please stop it.
No, most chronic pain sufferers do not have fibromyalgia.
Some have endometriosis. Some have cancer. Some have broken bones leading to nerve damage. Some, like the female, have spinal deformities and injuries. Some have other diseases, including scarlet fever or COVID. Some have arthritis. Some have multiple sclerosis.
Most do not have fibromyalgia.
Learn to be kind to those with chronic pain.
One day, through no fault of yours, it could be you. And trust us when we say the last thing a chronic pain sufferer wants is pity.
It’s understanding and validation the pain is real.
The female’s pain is real.
So is the cancer patients, those who suffer from arthritis, chronic kidney stones, and a boatload of other conditions.
Just because you can’t see it doesn’t mean someone isn’t suffering.
And, chronic pain sufferers?
We’re told, over and over, to not burden or exhaust others with our suffering. We’re told we should stay quiet.
We wouldn’t want to make anyone uncomfortable.
How dare we make anyone uncomfortable.
The female writes books because it helps her get through each day.
She publishes them hoping they help others get through their day, too.
Do not ask what the female would endure if she had to actually leave home to work. If she had to, she would… but it would hurt more than it already does.
And that is why she has so much desperation and determination to succeed, so she can continue living a life where she can cope with the chronic pain and be productive. For her, being productive is a victory. It’s a very important victory.
It’s the kind of victory that helps her get through the dark days.
“I can do this, even though it hurts.”
“I can do this.”
Then, most importantly… “Look. I did this even though it hurt.”
Welcome to life with chronic pain.
End note: When someone tells you they suffer from chronic pain, one of the best gifts you can give them is your understanding… even when you can’t understand it.
And for fuck’s sake, stop asking if the person has fibromyalgia. Ask for the cause if you need to be nosy. Otherwise, ask how you can help.
Because really, sometimes, the one thing someone suffering from chronic pain really needs is someone to pick up the goddamned groceries because it hurts so damned much or to drive them somewhere because holding the steering wheel may as well be like dumping your hands in acid.
(Seriously. Ask if you can help… and if they say they have a need, go and help them.)
Validate, don’t invalidate.
Believe, don’t judge.
But most of all, be kind.