This card is to go with my post on How to Use the ER in Case of Chronic Pain Emergency, which has gotten over 50k views in just under a year! I never thought anything I wrote would be shared to facebook 10k times, or viewed 50k, or shared all over Pinterest, or anything remotely close to that, honestly, especially in my first year of blogging. I’m so thrilled and so thankful for the opportunity to share what I have researched and witnessed firsthand about living with chronic illness, chronic pain, disability, and mental health challenges.
I will be hunting down more relevant alert cards and posting as I find and edit them. Please feel free to leave suggestions in the comments below, and I will do those first!
#ehlersdanlossyndrome #emergency #alertcard #justincase #infographic #chronicillness #chronicpain #EDSawareness #EDS #hypermobility #dislocation #subluxation #JHS #hointhypermobility #hypermobility #severepain #EDSalertcard
I tried to make a new header and improve my blog’s layout a tiny bit, but I just can’t decide which header image I like the best, out of all the ones I have made. I guess I haven’t knocked my own socks off yet with any of them, so until then this blue beach scene will have to do. Reminds me of the coast in oregon on an especially pretty day, mixed with the hand-painted watercolor cards my grandma used to send on birthdays.
You can see I did decide to change the wording of my tagline from “survive with chronic pain” to “live well with chronic pain” as I think that’s a better goal for me now, more than a year out from my diagnosis of Fibromyalgia, about a year out from learning that I also had Chronic Fatigue Syndrome, Joint Hypermobility Syndrome, and Spina Bifida Occulta, and about six months into realizing that I haven’t been making as much progress as I would like, because I also need to deal with several anxiety disorders, including PTSD. It’s been three and a half years since I was in an auto accident that changed my life forever. I no longer am content with “surviving” because it’s not enough, I want to do more than just get through the day. I want to thrive, chronic illness and pain be damned.
Right now I’m really trying to remind myself to just make one or two changes at a time since I have another blog to get off the ground right now and don’t need to be spending so much time over here, but I can’t seem to stay away. At least I’m taking my own advice about making small changes one at a time instead of trying to overhaul the entire theme in one day.
More reality checks when it comes to chronic pain and opiates, via a super smart fellow blogger! So happy to print this and put it in my medical binder for those idiots who think I should just suffer endlessly, needlessly, and be happy for the privilege.
It’s just so wonderful when people form an opinion based on facts and not histrionics.
Hooray for using our brains!
Pain & Opiates: Perceptions vs Reality
1. false: Opiates take pain away completely.
TRUE: Opiates do not remove chronic pain, they do not numb pain like Novocain, they merely dull it enough so that it isn’t all-consuming.
2. false: Pain is the body trying to tell you to stop, so you shouldn’t take opiates to cover up the pain signals.
TRUE: Normal pain is an alarm to take action, but chronic pain happens when the alarm gets stuck in the “on” position – the switch itself is broken.
3. false: Opiates make you dull, confused, and non-functional.
TRUE: When used for pain relief, opiates allow people to be more active and functional, get out of the house and socialize, sometimes even continue working.
4. false: There are other pain medications that work just as well as opiates.
TRUE: Opiates are the most (and often the only) effective medications for pain.
5. false: Opiates have severe and permanently damaging side effects.
TRUE: Opiates have fewer and lesser side-effects than most of the other medications prescribed for pain.
6. false: You will get addicted if taking opiates.
TRUE: People taking opiates for pain are statistically unlikely to become addicted unless they already have addictive tendencies (5% chance). However, regular use of many medications causes dependence after your body has adjusted to them.
7. false: If you take opiates for too long, you’ll get hyperalgesia.
TRUE: Opiate-induced hyperalgesia is extremely rare in humans, and this scare tactic is based on just a handful of very small research studies.
8. false: If the pain is constant, you’ll get used to it and it won’t hurt as much.
TRUE: Pain that is allowed to persist uncontrolled leads to changes in the nerves that can eventually become permanent.
9. false: Opiates work the same way for everyone.
TRUE: Different people get the same amount of pain relief from widely varying dosages because our bodies are all different in the way we “digest” opiates.
10. false: It’s better not to take opiates because they damage the nervous system and cause hormonal imbalances.
TRUE: Persistent pain results in the same kind of damages to the nervous and hormonal systems.
11. false: You should not take opiates because your pain won’t improve.
TRUE: Chronic pain can only be treated, not cured. Opiates are often the best means available to treat the devastating pain symptoms until a cure is found.
12. false: If you start taking opiates, you’ll just have to take more and more forever.
TRUE: Most chronic pain patients finds a stable dose of opiates that works for them. If doses need to be increased, it is usually because the pain condition gets worse over time.
13. false: People only want opiates for the high.
TRUE: When taken as prescribed for chronic pain, opiates do not make you “high”. The same chemicals that make illegal users “high” go toward dulling the pain instead.
14. false: It’s better to tough it out.
TRUE: Denying people pain relief sentences them to a life of unnecessary suffering.
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“The patient uses opioids to relieve pain and maintain a normal relationship with the real world; the addict takes opioids to escape from reality.” – Ronald Melzack
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Many people disabled by chronic pain are unfairly accused of lying and faking, so here’s some myths from that category too:
1. false: People who complain about chronic pain are just trying to get SSDI.
TRUE: Most people disabled by pain desperately want to work. Many had to give up high-level, well-paying positions and now live in poverty on SSDI. There may some fakers, but this is not a reason to deny SSDI for truly disabling pain.
2. misleading: If injured workers are given opiates they are unlikely to return to work (statistically true)
TRUE: This is probably because their injuries are serious enough to cause chronic pain and require opiates, not because the opiates are keeping them away from work.
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1. Source for addiction statistic:
I would like to take a moment to recognize that February 28th is Rare Disease Day.
The name implies that not that many people are affected, but that’s a totally false assumption. There are way more of us than you would ever guess! Many of these diseases are so rare that physicians do not know how to test for them, would not recognize the symptoms, or take adequate steps to obtain diagnosis. There is only room for a certain amount of information in each person’s head, and I’m not implying doctors aren’t doing their job, just that there are probably many more who live with rare diseases than are currently counted on the tally, which is already estimated at well over 300 million worldwide. I live with rare disease, I know many who do as well, and let me tell you, a rare disease is a special kind of
hell burden. Doctors think you’re crazy for even bringing up genetic testing, they think you’re a hypochondriac if you tell them what your symptoms and odd blood tests match from all your painstaking research, which if you have a rare disease, you absolutely have to do, and they scoff at the mention of names they’ve only briefly skimmed in texts and never seen in real life.
My rare diseases are ones that are actually fairly well-known, though doctors usually don’t know much beyond a one sentence summary (if I’m lucky), so finding proper treatment or even a specialist with a depth of knowledge on them is difficult. My path to finding a diagnosis is not over yet, and what I have managed to find out has been like pulling teeth. I know I’m one of the lucky ones just learning as much as I have so far.
When I first gathered the courage and research needed to talk to a doctor about Ehler-Danlos Syndrome, her immediate reaction was to call me fat. Yes, really. She looked at me, puzzled, and said, “Isn’t that a disease for tall and thin people?” and I had to bite my tongue, hard. I also had to accept that she was not going to help me with this. Not now, and not ever. She simply thought I was nuts, even though I match 100% of both diagnostic criteria. It was humiliating, I felt lower than dirt and like maybe she was right, maybe it was all in my head, I was making this up for attention or so I didn’t have to work anymore. She had me so confused at a difficult time in my life when I didn’t realize that pain affects cognitive abilities, and she definitely abused her position of power as a doctor, numerous times. I started to internalize all her comments about my psychiatric health, personality flaws, and physical unattractiveness. I lost trust in myself completely because I thought I was either dying or a liar, and I couldn’t figure out which one.
Unfortunately for my entire story, really, I was in the middle of a lawsuit with a company whose semi-truck hit me, so I didn’t want to switch doctors, even though she was pretty incompetent and wouldn’t sign off on X-Rays for months after my car accident, not to mention that she made me cry and hate myself and panic for days after every appointment. This doctor often repeated with obvious frustration that there weren’t a lot of options, she didn’t know what else to do for me, and that my panic disorder was obviously the root cause of all my problems, not my car accident. Sigh… there’s much more to my dealings with her, I have a long list of quotes that would make you cringe! But telling me it was all in my head was her favorite. She did it in writing, even.
Nevermind that I had actually been diagnosed with two relatively serious spinal injuries once we started taking X-Rays and MRI’s, and they were dire enough to warrant my two neurosurgeons getting excited and thinking they were going to get to cut into me. Both of them were told politely that for me, back surgery is not for curing pain, it needs to be done for a more compelling reason, or in the case where surgery will stop further degeneration. Neither one of those things is true for me, and neither doctor really believed that they could improve my pain in the long run. They both just wanted to “cut and see”. No. I have enough problems without botched spine surgery! In addition to the torn disc in my lumbar and the one in my cervical spine, there are also a set of birth defects including the Spina Bifida, plus 11 Schmorl’s Nodes (central disc tears that protrude into the vertebrae below), nerve root cysts, a random scarred area of my spine about a centimeter across, height loss and disc desiccation, bulging discs, disc degeneration/arthritis, and best of all, completely unexplained extra cerebrospinal fluid trapped in odd places in my spinal column, even two years after the car accident. I was told that none of that stuff was a big deal, but I beg to differ! At 22 I had more problems with my spine that most people in their 70’s or 80’s. That is not “normal”. As far as figuring out what out of all those issues is causing me pain? I don’t think it even matters at this point, studies have failed time and time again to relate MRI changes of the spine to specific problems. We all seem to experience them differently. Supposedly other people whose spines look like mine can actually function as if nothing is going wrong in there. Good for them. I guess I’m just rare on all accounts!
I sought out the local teaching hospital in desperation, starting at the pain clinic where I was, somehow unbeknownst to me, diagnosed with fibromyalgia, hyperalgesia, allodynia, and neuropathy. Since no one bothered to mention that I had been diagnosed with those things, I was still frantically looking for answers in a myriad of other directions, while waiting two months for my referral to rheumatology, where I finally figured out what was happening to me, or at least found out that I had been right all along to keep pushing, and to not let any MD stigmatize me into silence.
My primary care at that time still didn’t believe that I was in real pain, even after emailing back and forth with my fibro specialist, and I’m pretty sure she thought fibromyalgia was a fake diagnosis. She told me she was sure I didn’t have it even after two specialists diagnosed me months apart, at the most reputable hospital in the state. “Other people have it so much worse, just get over it” (not necessarily as true as she thought it was… I was just very stubborn about hiding how bad it had gotten because it made me seem even crazier). “You’re a smart girl, I don’t understand why you can’t figure this out” (thanks?). “If you would just eat right, this wouldn’t be such a big issue” (Wanna come over to my house and cook healthy every night and watch me throw it up later because many “healthy” foods hate my body? Didn’t think so… I’m doing my best. Food doesn’t cure chronic illnesses, though it does help). “I can’t do anything for your pain, but you should really start taking longer walks” (this was a favorite of hers… infuriating when you are trying to decide if walking to the toilet is even an option right now). “You won’t get better by taking time off work, you just need to try to get through it.” and best of all: “Oh, is that your sympathy cane?” Phew. Right. Because if you can’t see it, you must make the person feel terrible for having it. I struggled through years of increasingly aggravating (more like tortuous) physical therapy and massage, while my other symptoms began to make themselves known and I pushed them away, in denial.
It was all related to panic attacks, I told myself. Calm the fuck down, Jessi, then it will stop.
Except, it didn’t stop, even on a massive dose of 3mg per day of clonazepam, which works out to about 9mg circulating in your system at any given time, more if you’re a slow metabolizer.
I was stuck with that mean, bitchy primary care doctor, throughout the three years of wasting what little energy and brainpower I had on a lawsuit that failed because I was too exhausted, sick and in severe, never-endingpain to focus on seeing it through.
In the end I went into the office of the attorneys who represented the company that hit me, just me and my boyfriend, and I talked them up a couple thousand from the measly couple thousand they offered. I made the attorney I was arguing with leave the room to talk to his boss at least eight times, and after three years of work and hope and being told my case was worth hundreds of thousands because my life had been utterly destroyed by this accident, I was dropped by my lawyer within a month of my court date and told for the first time that the accident didn’t ‘look big enough’ to have ruined my life, and a jury would think I was malingering. I gave up, something in me snapped after three years of putting so much hope into being fairly compensated for what had happened to me on my way to work and all the torture I had endured since, all the tests and all the ER trips and the days spent in woozy pain land.
We closed the case in the enemy’s plush, modern law practice, at the beautiful inlaid table, in the room with soaring glass walls overlooking a rooftop garden and downtown Portland. When the attorney picked up my signature off the table and began to turn his back and walk away, I felt my soul deflating. I had been keeping strict wraps on my panic attacks for months up until that moment, but my body took over right then. It started as a swelling in my chest and a ripping sensation in my throat, and then a noise that sounded more like a dying animal than an upset human tore it’s way loudly out of my lungs. I am not sure how long I sat there and screamed at the top of my lungs, my boyfriend trying to close the curtains while people came up to the glass room like I was a monkey in a zoo, staring in at the girl freaking out for no apparent reason.
What my doctors are starting to understand now, years later, is that I was so affected by the car accident because I was a perfect storm of bad genes, PTSD related scars in my spine and on my brain, and birth defects; a ticking time bomb that exploded when I was hit, and set in motion a cascade of chronic illnesses.
Ehler-Danlos Syndrome is congenital, and it often comes along with a host of other rare conditions, such as Chiari Malformation, POTS, OI or other autonomic nervous system failures falling under the category of dysautonomia. Having a tethered spine, cognitive impairments, Occipital Neuralgia/Migraines, Trigeminal Neuralgia, TMJD, Spina Bifida, Chronic Fatigue, and Fibromyalgia are all associated as well, among many other issues. There are two scales to help you figure out at home if you may need to bring Ehler-Danlos up with your own doctor; one is called the Brighton Scale, and one is called the Beighton Score. Either one is accepted as the standard for diagnosing the disorder in the absence of genetic testing, but it’s easy to measure both scores at the same time.
BEIGHTON SCORING SYSTEM for Ehler-Danlos Syndrome:
It is extremely important to know if you have EDS, especially if female, one of the reasons being it can be an issue with pregnancy. In addition, it affects your connective tissues, which are not just in your joints, they are in your organs and throughout your body as well. It’s also important to know that if you suspect you have it, the treatment is not much different for EDS type III Hypermobility (the most common) as it is for severe Joint Hypermobility Syndrome, so even if you can’t get a formal diagnosis of EDS, insist on them writing the severity of your JHS in your medical charts for a more discerning doctor to pick up on later, hopefully, and then do physical therapy for hypermobility, but carefully and only under the guidance of someone who knows how to improve muscle tone around the joints without stressing them too much or risking them subluxing or slipping out!
There are 6 main subsets of Ehler Danlos, but even more variances than that exist within the condition when you get really technical. Some are much, much worse than what I suspect is going on with me. I have a friend I greatly respect and admire, who actually managed to acquire not one, but two forms of the rare disease in utero.
Here are the various types of Ehler-Danlos Syndrome:
The main six types:
Classic Type I, Classic Type II
Hypermobility Type III
Vascular Type IV
Kyphoscoliotic Type VI
Arthrochalasia Type VII A-B
Dermatosparaxis Type VII C
The actual meanings and specifics of all these diagnoses is variable and too lengthy to go into detail on here, but for more info, feel free to head over to EDNF.org (Ehlers Danlos National Foundation) which has a lot of good info for patients and physicians alike. I am still trying to hunt down a doctor who will agree to genetic testing, but in the meanwhile I am doing my best to learn to avoid subluxated joints and painful dislocations as much as possible.
“More than 350 million people worldwide suffer from a rare disease. If a disease affects fewer than 200,000 people in the United States, it is considered rare. There are currently about 7,000 rare diseases identified worldwide, and approximately 80 percent are caused by genetic changes. These diseases are often chronic, progressive, complex, life-threatening, and affect the quality of life.”
I was born premature. For many reasons that were unavoidable at the time, my mom was on medications that are now considered seriously unsafe to a fetus and one in particular which has been straight-up recalled by the FDA, called Terbutaline, to keep me inside, and to keep her alive while medical emergencies kept cropping up. It was not a fun pregnancy for my mom and it was her first, and I think in the disaster of incompetent doctors I just got lost in the shuffle. I was pronounced a healthy baby with a minor heart murmur and bi-lateral hip dysplasia, and no one even noticed the Spina Bifida and hypoplastic vertebrae. I can’t blame them, when you’re contemplating heart surgery on a preemie infant, I suppose there are enough things to worry about without actively looking for more issues. Now it is tested for regularly, and monitored for in families with a history, though it is not entirely clear if genes, environment, or more likely a combination of the two, are to be blamed for it’s appearance in a fetus. However, we do know that it happens within the first four weeks, and the risks of having a baby with Spina Bifida if you have it yourself are much higher than for someone without it, but are also greatly reduced by taking 4mg of folic acid a day. Doctors vary on how long a woman should be taking the folic acid for optimum results, but all say a very minimum of a month, some say a year, of taking a regular dose of folic acid and other prenatal vitamins before attempting to become pregnant.
My father has Spina Bifida Occulta as well, and the same cracking joints that get stuck, but he is the opposite of flexible. I, however, was a gymnast nicknamed “Rubber Band Girl” by my teammates because I was so damn bendy. My younger brother has Spina Bifida too, and is also still insanely limber and never ‘grew out of it’ like he was told, and has joint pain as well. I was much more active than him as a kid, involved in gymnastics, swimming, ballet, tee-ball/softball and just about anything else I could attempt my hand at.
My pain has skyrocketed uncontrollably throughout young adulthood, especially since my car accident, but before that I had pain that I thought was either normal or “no big deal” (although you could see by my declining test scores throughout middle and high school that it was a big deal) and tried to play it off in a variety of ways. I especially remember that getting picked up as a kid was something I dreaded with the wrong person, because too much digging in my armpits or hips or back was insanely painful. As a child and throughout being a teen, my hip used to pop out while I was lying in bed, and I would be frozen, silently screaming like the wind was completely knocked out of me until I could force it back in. But that was “normal”?
The Spina Bifida pain presented itself mostly as tailbone pain and low back pain throughout my childhood and teenage years. I could do more sit-ups than anyone else in a minute, in my entire grade, boy or girl, but I had to be on the cushiest stack of floor mats or I couldn’t even do one. Laying on a hard surface would make me sweat with pain. Again… why that was normal, I don’t know. Anything that requires lengths of sitting or lying on something hard left me wondering if I was going insane, or if I should tell someone how much it hurt. It took until last year to get a formal diagnosis of Spina Bifida added to my chart, but I am so glad I know now and that I know to seek medical advice before becoming pregnant, if that is an option for me at all in the future.
From my rambling about it, I’m sure you gathered that Spina Bifida is one of these rare diseases as well. It is widely screened for now, thankfully, and there is even a surgery that can be done in utero to close a hole in the spine of the fetus if the problem is very severe. People with Spina Bifida who are looking to conceive can obtain genetic counseling to see what their chances are of birthing a non-affected child.
I had planned to write more, and maybe I will come back and do some more work on this post soon, as I just learned that this entire coming month is dedicated to raising awareness for rare diseases.
Related Media for Further Research:
http://www.rarediseaseday.org/ – An organization dedicated to bringing to light rare diseases and their causal factors. Networking for patients.
http://globalgenes.org/rarelist/ – A comprehensive list of almost all known rare diseases, with links to organizations where possible. This website also has toolkits for various life situations that face patients and caretakers, as well as packets for starting a fundraiser for rare disease. They have quality images for spreading awareness through social media as well. Most of the ones I used in this post come from their press release packet.
https://www.rareconnect.org/en – Hosted by trusted patient advocates, this is a place where rare disease patients can connect with others globally.
EDNF.org (Ehlers Danlos National Foundation) has a lot of good info, for patients and physicians alike. It also includes a section on how to find a diagnosis, and many of my friends have stated that emailing the organization can help push you through to an interested specialist as quickly as possible.
http://chronicillnessproblems.tumblr.com/EhlersDanlosInfo – An awesome collection of information assembled by a fellow blogger. Incredibly thorough and way more in depth than my little synopsis! She also has a wealth of links and research included, which is nice for those of us who like to learn as much as possible.
http://www.spinabifidaassociation.org/ – For 15 years the Spina Bifida Association has been seeking answers, spreading knowledge, and connecting patients. This website has a great selection of information for patients, practitioners, and caregivers.
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Love that image.
Sadly, we start to use this sort of language against ourselves after a time… It has to stop! Shame and guilt need to be taken off the shoulders of the chronically ill and those in chronic pain, there is enough to deal with besides having to “prove our pain” to anyone.
No one chooses to suffer constantly. No one. We all want to be happy, healthy, contributing, but you never know what someone’s suffering amounts to unless you have to live under the same burdens and restrictions.
Chronic pain isn’t easy to express, not in words or pictures. I have struggled to express how chronic pain actually feels through art. My paintings are abstract multimedia pieces, and for the most part they’re just so I have something bright to look at around my house. They leave the onlooker with no idea that I suffer with every brush stroke, every adhered scrap, every swipe of the palette knife. These five artists, however, have managed to express so many of the things I feel every day, but have no idea how to show people a visual representation of.
Since I’ve been feeling particularly lousy and in way more pain than is even normal for me, I’m gonna go ahead and let this count as a blog post? I want to do a whole series on art relating to chronic illness, but we will see. I’m so disorganized!
1. Of course, let’s start it off with Frida, who had a pain syndrome that many have speculated was fibromyalgia, as well as severe and debilitating chronic back pain which she has portrayed so clearly here. I have always loved this self-portrait, entitled “The Broken Column” even long before I developed clear symptoms of fibro:
#SpineDamage #NerveDamage #FracturedVertebrae #DegenerativeDiscDisorder #HerniatedDisc
2. The damage done to my low back from getting hit by a semi truck. Now I feel like this when my back goes out, which is kind of a lot because of the addition of Spina Bifida Occulta and Joint Hypermobility Syndrome:
#HerniatedDisc #DegenerativeDiscDisease #Scoliosis #Lordosis #Osteoarthritis #EhlerDanlosSyndrome #JointHypermobilitySyndrome #SpinaBifidaOcculta
3. Nerve pain, just imagine those lines about an inch underneath your skin, until it’s basically in your bones:
#Neuropathy #NervePain #NerveDamage
4. This one reminds me so clearly of the one sided occipital migraines and trigeminal neuralgia which I am constantly dealing with:
#OccipitalNeuralgia #TrigeminalNeuralgia #OccipitalMigraines #TMJ
5. Sad but true. This is what yoga feels like now. I am always telling my boyfriend that it feels like my spine is trying to rip clean free of the rest of my body, just like this:
I’m not posting these for pity or for shock value, sometimes it helps me to have a visualization of my pain ,because it helps me to picture it disappearing while I meditate. Other times I just want to know I’m not alone. I’m sure I’m not the only one who feels a little bit validated when they see their chronic pain taken seriously. These artists take pain seriously, but they also managed to turn their pain into something creative. Using pain as inspiration for making beautiful things or things that others will relate to is a huge goal of mine as a formerly creative person. Illness can’t have my creativity, and these honest portrayals of the agony of chronic pain help me remember that art and the freedom it gives us is such an integral part of healing. Time to start painting again!
September is Chronic Pain Awareness Month
I hear it echoed over and over again by my friends, my self, and chronic illness writers across the web. The hardest part is getting those around you to understand what chronic pain takes away, not only from your physical capabilities, but cognitive abilities, focus, social functions and so many other things, too many to list. What the general public and even caretakers and close friends may not know is that chronic pain changes everything, from taking a shower to driving to thinking clearly in a meeting to not cutting a major artery in a surgery. Some days, I feel lucky to have done the dishes even if I did nothing else that day. Sometimes just surviving is overwhelming. If I can do nothing else, on my days when I am resigned to a chair or the couch, I want to help spread the word about the real bravery of the men and women who wake up each and every morning in unending, unforgiving pain. In addition, I desire so much to ease the transition for newly diagnosed patients with chronic illness through education, advocacy, and compassion. As a community of chronic pain patients one of the most pressing issues is to get a realistic, non-romanticized version out to the public of what it is like to be ill and not be able to rely on your body, or even you brain, depending on the day.
I am the same person I was before my illnesses took hold, but I am also different. I speak differently, and I speak about different things. I spend most of my day distracted by pain, and looking for a distraction from it. I am sure that the people around me no longer believe all the crazy things that are happening within my body can possibly be happening to one person, all in one month, and that is part of the stigma of chronic illness. I too didn’t understand what it meant to look fine on the outside but deal with so many problems within your body that even basic work was impossible. Five years ago, I would have pointed at someone like me and said “oh, she’s exaggerating, it can’t really be that much worse than my _____ (insert: back pain, flu, headaches, anxiety, arthritis, whiplash injury) and I worked though all of those things” but I was wrong. I was so terribly wrong that I guess life had to prove it to me in a pretty brutal way. How does that saying go? Judge not, less ye be judged?
I figured, especially because I was one of the judgmental voices, the harsh and unforgiving “them” who could never understand chronic illness, and now I understand all too well, maybe I should be one of the ones who helps shed some light on the many unseen and unspoken hurdles facing patients with a myriad of rare, invisible, incurable, and terminal illnesses. I’m honestly guilty of still trying to hold myself to standards that I cannot achieve with my illness in full force like it currently is. Hopefully in the midst of promoting acceptance and support from caregivers, relatives, friends, significant others, healthcare professionals, and the media, I can also sway some fellow spoonies to take it a little easier on themselves too. If you are dealing with daily pain that will not relent, try to gently remind yourself that you won’t gain any ground by ignoring your symptoms.
The road to being okay with your new life as someone living with chronic pain is paved with research, acceptance and acknowledgment of your symptoms. For those of you who are not in chronic pain, likewise, researching your loved one’s disease, then verbally showing acceptance and acknowledgment is the best gift you can give someone who is suffering. It is amazing what hearing the words “I believe you” can do for the soul. It is like being wrapped in a big soft blanket and having a hot cup of cocoa placed in your hands on a cold day.
Never forget that you own the right to tell your story as raw and honest as you feel comfortable with. You aren’t just doing yourself a favor by getting it out of your head and into writing, you are promoting awareness by removing the myth from your illness. Your pain may be invisible, but that does not make it any less real, any less scary, or any less debilitating than a visible injury. We spoonies all have a lot of people to prove wrong, from the 1/4 of primary care physicians who believe most of their chronic pain patients are faking, to emergency rooms that are ill-equipped to deal with chronic conditions, to unsupportive families who refuse to do their research, and of course general stigmas against pain patients that have existed for ages. These are all barriers to effective research, communication, and seeking out treatment. But they are obstacles that we as a group can overcome.
Raise your voices, tell your triumphs and your horror stories alike, others need to see what we go through on a daily basis and speaking out helps to break down those barriers and create road maps for understanding the whole of chronic illness, not just the symptoms, but the underlying causes and the body-wide effects created by living a life in constant pain. I know it is difficult, but only when we are not afraid to share what we are going through will we transform the silent suffering of people with invisible illnesses and chronic pain into a growing understanding that we too deserve to be treated with the dignity, respect and even admiration for what we deal with on a daily basis. It’s not just an idea, it’s a necessary change and we have the numbers, the intelligence, and the determination to make it happen.
Click on the thumbnail below to go to the larger version of my painting for Chronic Pain Awareness: