Know Thy Enemy. It’s a simple concept that reverberates throughout society, but how much do we heed these ancient words or ponder why it’s good to know one’s enemy. It’s pretty simple, really. In order to battle something and win, we need to know how it operates, learn its weaknesses and strengths. We need to know where it might be most vulnerable so we can overcome its force. While this often applies to armies and politics, pain and health problems are really no different. We’re lost if we cannot understand the enemy we’re dealing with, from its original source to the allies its called in for reinforcements. While there are a number of ways to win against skirmishes with pain and make it seem a less formidable foe, we have to know the source of our pain in order to defeat it completely.
One of the first things this video says about pain is that when we understand how pain works, we feel less powerless in the face of it. Being a seasoned general in this war, I couldn’t agree more. The video is less than 5 minutes long, yet it explains a great deal about how pain works from a biological standpoint and includes a number of factors known to increase or decrease pain.
Why is this important? Because a multi-disciplinary holistic approach is often the best tactic to defeat pain. You can’t always address the original cause and win. Sometimes those allies are sore losers and keep the fight up for their lost foes. Sometimes the pain comes from another source, within our own camp. Things like losing familial support and friendships and other things that impact positive mental health can play an important role in the levels of pain we experience in chronic illness. Watch the video to find out more about the many contributors to chronic pain.
Knowing this, what are some of the things you can try to eliminate or reduce your pain levels? What were you surprised by the most? What did you feel resistant or skeptical about? Answering these questions could help you get to the bottom of these feelings and lead you to better paths of healing your pain.
On the flip side, what are some of the things that have brought you relief in the past that surprised you? Is it something you’re still utilizing or did it fall by the wayside? How much relief did you get from it at the time? Share it below in the comments! You just might be helping another chronic pain patient to find relief!
Now that you understand the many different mechanisms behind chronic pain, check out some of the great stuff we’ve reviewed that reduces pain in a variety of ways:
It’s the Little Things That Matter They’re the things that mean a lot They’re the things that I can count on When I’m giving things a thought
Oh there’s lots of big grand gestures That are meant to mean big things But in the end, they aren’t the ones That tug at my heartstrings
I prefer the smaller hidden ones The things that seem quite shy The little acts that are given out Not meant to catch your eye
It’s the little things that matter That make a quiet sound I love them best from all the rest They make the world go round
by Pamela Jesssen
I’m fighting a battle that no one can see Invisible Illness, it’s all inside me On the outside, I’m perfect, look healthy and fit But inside is different, and I’m all over it
Pain is my companion each day and each night And Chronic Fatigue is something else that I fight My body is aching, from my head to my toes How long can I do this, God only knows
There’s a feeling of throbbing in all of my joints My hands and my feet feel like stabbing pinpoints I’m shaky and trembling and can’t stand up long And yet on the outside, I look so damn strong
My heart feels so weary each new day I face The world ’round me screams I must pick up my pace But my spoons are all gone and I’ve none left to give And I’m telling you now, this is no way to live
There is still hope inside me, and I must be strong There are good days ahead and for those days I long I still have my loved ones who stand at my side My husband’s amazing, my kids are my pride
My cat loves to cuddle, she seeks out my lap I love her, she’s purrfect, a warm furry wrap My garden is growing, there’s roses galore Hydrangeas, Marigolds, Pansies and more
I’ve good books to read and Netflix to binge Avengers! The X-Men! Superheros! (don’t cringe!) A good movie can take my mind off of my pain And there’s several I don’t mind watching again
What I’m trying to say is there are good things in life And I have to cling on to them, despite any strife For these are the things that help me get through the days We all have our tricks, and we all have our ways
I’m grateful for everything and I often give praise For the sunrise, the sunset and all the good days Days when I manage the pain and don’t fade When I come out on top and know I’ve got it made
There are so many people who are worse off than me And I try to remember them, for they help me see that my life may hold pain, but that’s not my whole life I’m a friend, and a mother, an advocate and wife
I’m able to offer my time and my skills I volunteer often (despite all my pills) I help to make healthcare better for all It’s intensive, rewarding and for certain my call
I blog about Health, and I share what I know There’s a network of us and we continue to grow I pray for the cures to the issues we face and I share education, in my little blog space
So, my life really isn’t all that bad in the end It’s all about attitude, and sometimes I pretend That pain doesn’t grip me, fatigue isn’t there Fake it til you make it, even if it’s not fair
Life is a choice, and I choose to smile Despite any hardships, it’s just not my style To wither and whine or to despair with no hope I refuse to sink down, so throw me that rope
My friend, make the most of all that you’ve got Life is short and we’re only given one shot Look to the bright side, and may joy be your friend From now to forever, beginning to end
There is Always Hope
by Pamela Jessen
All rights reserved. Copyright 2019 by Pamela Jessen. These works may not be reprinted without the permission of the author.
Pamela Jessen lives in Langford, BC Canada. She is a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness at pamelajessen.com. She also writes for The Mighty, PainResource.com and various independent publications. Pamela is also a Patient Advocate with the Patient Voices Network in BC. She sits on 4 committees and one Provincial working group and has also been involved in advocacy work at the Canadian National level as well. Pamela is married to her amazing husband Ray and they have one cat named Dorie.
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Editor’s Note: This Post was recently updated and republished on 6/19/19.
This poem took the Pongo Poetry Prize for teen poets. Written about her experiences dealing with hypermobile Ehlers-Danlos Syndrome (hEDS), the 17 year old poet studies Early Childhood Education at the University of Cincinnati.
by an anonymous, age 17
Everyone wants to be different, But not like this. The struggle, the pain, the guilt. The feeling that no one understands.
I didn’t ask to be different. I didn’t ask to be special.
I try to remember to do my best every day because the next day might be worse. I want to run a 5k. I want to be on the honor roll. I want to be a teacher. But what if it gets too bad? Will I ever finish college? Will I ever hold a job? Will I ever get to hold my own newborn child? Or will I sit alone unable to move from the fear of getting worse?
I didn’t ask to be different. I didn’t ask to be special.
But what if this difference can make me stronger? What if I can be the voice for the people who are sitting alone? What if I can be the teacher who understands?
What if I can prove that being different made me better? I can And I will.
I didn’t ask to be different. I didn’t ask to be special. But I’m glad.
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‘Salt in My Soul’ by Mallory Smith really took me by surprise. It isn’t just the story of a brief, but beautiful life wrapped in journal style writing, it’s a literary pleasure one can sip like their favored tea, savoring the sweet aroma of each sentence. It’s beauty doesn’t make it any less tragic or relatable. It makes it a much more enjoyable and universal read that anyone could easily enjoy. The world lost a great writer the day Mallory Smith took her last breath. Luckily, she left behind this treasure for us to enjoy and learn from, along with many great environmental works during her freelance writing career.
There are many life lessons in Smith’s words, made wise beyond her years by chronic illness and the knowledge that her lifespan would be shortened dramatically by Cystic Fibrosis. Being diagnosed with cystic fibrosis at age 3 and developing one of the deadliest lung infections a person with CF could have as a young teen, Smith knew she probably wasn’t long for this world. She did everything she could to make her young life count and this journal is part of the legacy she leaves behind.
In her journal, she is sometimes at odds with herself; the dreams and desires of youth colliding with her illness in unpredictable ways as she makes her way through her life at Beverly Hills High School, later at Stanford and finally in her all too brief career as an environmental writer.
During her high school years, she writes often about how she’s not ready for it to be over, how she feels like she could stay forever:
I think I’m really afraid of change and the future and I hold onto the past. Every time something happens, I feel the need to write about it. I always want to have photos and I’m hugely afraid that Facebook could crash and all of my pictures could be lost. I don’t ever want to forget anything and it scares me that things from as recent as freshman and sophomore years and sometimes even junior year are starting to blur in my memory.
Mallory Smith, ‘Salt in My Soul,’ Pg 20
How at odds with the natural picture of youthfulness we all conceive, this high school senior desperate to hold on to the beautiful things of which she is apart. How uncharacteristic for teens to even think of fading memories or lost memorabilia. What shows through is her desire to grasp life and hold onto the good things and to show the world that life one snapshot at a time.
Despite the strict life of treatments and regimens Smith had to follow from a very young age, she was also a girl like any other. Her mother was occasionally in cahoots when it came to cute boys, such as this entry during her pre-college Stanford visit:
…And he was really cute! But I don’t remember his name. My mom asked him to show us where the gym was, so he started walking with us and my mom was like “Oops, Mal, I gotta meet dad, so you guys go ahead and call me after.” Haha. So typical, she just wanted to leave me alone with him. Wingmom!!!
Mallory Smith, ‘Salt in My Soul,’ Pg 31
You also get an intimate look at what it’s like to have CF, a genetic mutation which causes a defective protein to interfere with the ability of sodium to flow in and out of cells. This disruption affects many parts and functions of the body. In the lungs, it causes our usual thin mucus to become viscous and sluggish, causing the hallmark symptoms the disease is known for.
Salt is not an element the body can function without well. Mallory and other people with CF drink salinated water as a means to survive. In ‘Salt in My Soul,’ Smith explains their lives depend on it, as a person with CF could easily drown without the added salt.
If it’s the excitement of a medical drama you’re looking for, there’s no shortage of drama and intrigue with a condition like CF. Mallory shares her experiences with a rawness and immediacy that puts you up front and center during some of her toughest moments.
I woke up from the broncoscopy in a disoriented and feverish sepsis. Four nurses held me down on the bed as my entire body convulsed violently and erraticlly, while my fever quickly climbed from 103 to 104, then to 105, up to 106…
Mallory Smith, ‘Salt in My Soul,’ Pg 27
It’s easy to find yourself rooting for this young woman even though you know her life has already taken place, so brief, so beautiful, so full of compassion and love for the natural world which she defended with her writing.
You get a real feeling for Smith the Athlete, Smith the burgeoning woman and Smith the patient. Her words are easy to understand, yet filled with beauty and wisdom. Through the contributions of her mother, Diane Shader Smith and her friend Talia Stone whose words about Smith grace the first page of part one, you get a sense of how others saw Smith, her popularity among her school mates and more than a flash of what it’s be like to be the mother of someone with Cystic Fibrosis.
One of my favorite things about the book is rather simple. With such books one might anticipate being left hanging, but Mallory’s mother continues the story through journaling of her own, walking you through the complete journey the reader deserves and adding another vantage point from which to glean understanding and meaning.
‘Salt in my Soul’ is everything I’ve said and so many other things. From the introduction to the very last page, you’ll be hooked on every word. Get your copy now. Available in hardcover, on kindle or audiobook on Amazon or the retailer of your choice. If you don’t have a membership to Audible or Kindle, check the offers below before buy the book. They could save you some money!
'Salt in My Soul: An Unfinished LifeAuthor: Mallory Smith
Hardcover: 320 pages
Publisher: Spiegel & Grau (March 12, 2019)
I’ll be giving away one hard cover copy of the book and one Kindle Ebook version of ‘Salt in My Soul’. For full details, visit my Instagram page and enter to win between June 3, 2019 to June 9, 2019. For full rules, see my Instagram account, @caplestrange.
While you’re at it, check out these other titles by Mallory Smith and Diane Shader Smith:
I held this article for two weeks hoping the Cincinnati Enquirer would post the Op-ed I submitted. I haven’t received a response. So here’s my full story of the terrible, discriminatory treatment I received at Paul Brown Stadium; twice.
When you’ve spent over a decade to an entire lifetime rooting for a sports team or otherwise supporting an organization you believe in with your whole heart, it’s difficult to believe they wouldn’t be just as loyal and supportive of you. When you wear a team’s colors and post about their victories and losses on social media, it’s that much harder to speak out when you realize the organization has been practicing poorly concealed discriminatory practices against people with invisible illness, people who happen to be just like you. My husband and I wish more than anything that it wasn’t true. We wish that our beloved Bengals properly trained and ensured their employees treated everyone coming into the stadium was treated with dignity and respect regardless of their ability, but we would be lying if we did, as we experienced firsthand just what happens when you request accommodation at Paul Brown Stadium; twice.
Time Honored Traditions
My husband grew up a Bengals fan, so young when he caught football fever he spent years in abject misery being sent to bed at half time during some of Football’s most important games of the late sixties and early seventies. No matter how bad the Bengals’ record ever got, he remained a loyal fan. The whole of his life, it seems his beloved mistress has always been held at arm’s length; just as his own football career was sidelined by a season ending injury the first game of his senior year of high school, ending all of his college prospects, he’s spent most of his life watching not even from the sidelines, but from his TV at home.
Football has always been something I’ve very much enjoyed sharing with my husband. I enjoyed football before we met, but it was my husband who taught me to truly appreciate its complexities and brought me into the Who Dey fold. While I was a Cincinnati native, I came to associate the team more with my drunken step-father than hometown pride and I picked another team to root for. David changed all that for me. Football is one of the foundations of our relationship, one of the essential things he brought with him into our relationship that changed me and while the feminist in me sometimes cringes over some of the NFL’s practices and policies, I have no regrets about the many hours of football over which we’ve bonded and sometimes commiserated.
Season Tickets Cost Us More Than Money
This is why it’s so heartbreaking to me to have to say that our team, the Cincinnati Bengals, really let us down with their discriminatory practices. My deepest desire has always been to buy my husband season tickets so he could enjoy the game up close and personal, be a real part of Who Dey nation. It would have been easy in the early days of our marriage, when we were a dual income family. Before disability came and claimed our ability to be a two income family with good paying jobs. But once I was unable to work in 2008, money has been a constant struggle. This year, buying tickets wasn’t going to be any easier financially, but the symptoms of my conditions had been fairly good and I felt like it was best opportunity I would ever get to manage the games physically. When they called and offered us a tour, I took them up on it.
Of course we couldn’t afford the expensive tickets. We had to do the economy tickets which pretty much come with zero perks and are located in the corner. We didn’t care. We were thrilled to be in attendance to see our Bengals play for each and every home game of the season, even if it was from the corner. We were absolutely elated each time we arrived at the stadium. I was thrilled to be able to make it to my seat on my own steam, unlike in 2016, when I was so weak and symptomatic I had to do the only game we could afford in my wheelchair.
Only things weren’t working out quite as we’d hoped. I began having breathing issues every time I engaged in any sort of strenuous activity and walking the ramps and stairs of the stadium left me bent over gasping for air every hundred feet or so unless I moved at a crawl. By the third home game against the Steelers, I was too sick to attend at all. I was in a flare up. When I returned on the fourth home game opposing the Buccaneers, I was already struggling by the time we made it from the parking lot to the stadium. I didn’t want to risk triggering another flare, so I headed for the elevators.
Where Things Went Wrong
I was not prepared for what awaited me. The elevator lobbies at Paul Brown Stadium are encased in glass on each floor. The doors for entry are cordoned off with rope. On each floor, these cordoned off doors are guarded by two people. We noticed the two taking tickets, so we pulled ours out and as I handed mine to the man at the door, I said “I’m disabled. I need to take the elevator.”
The man proceeded to look at our tickets and try to direct us to the ramps. I reiterated that I was disabled and needed to take the elevator. He then pursed his lips as if he was trying not to laugh, looked me up and down inspecting me for any visible signs of disability and rolled his eyes, and once I began to try to explain further in a firm voice, he finally acquiesced by placing a wristband on my arm and allowing me to pass.
There we were, our first year ever with season tickets and we were being treated like criminals because I committed the crime of looking whole but actually being disabled. I was livid, not to mention completely flabbergasted. This was exactly the kind of treatment I had always heard about whispered in the chronic illness community and feared since the day I fell ill. Don’t get me wrong, I’ve been victim to plenty of side-eye and backhanded compliments that were just too clever to completely call out as ableist, but this was my first experience of being so openly disdained. Was this person looking at me like a sub-human piece of shit because he didn’t believe I was really ill or because he believed I wasn’t worthy of breathing his oxygen?
It bothered me the entire game. I sat in my seat feeling dejected. “I don’t think I’m coming back,” I told my husband. “I just can’t believe they treated me that way. I feel so humiliated, so degraded.”
Over the course of the next two weeks, I discovered during a stress test that my heart was the culprit for the distress I was experiencing during exertion and that until I could get in with a cardiologist to do an exploratory catheterization, I was to eschew all strenuous activity. This meant no climbing stairs or ramps.
There was a great debate between my husband and I about whether or not I should finish out the season. Not only would I have to face the possibility of more humiliating treatment at the elevators, I would have to be dropped off at the curb to wait out in the cold while my husband parked and walked back blocks away. The stadium simply wasn’t set up to handle the walking disabled well, as the only side that’s completely free of ramps and stairs is blocked off to vehicles.
We discussed changing our tickets to disabled access and resorting to using my wheelchair, but with having Ehlers Danlos Syndrome, a collagen disorder affecting the joints, and a generic chair I bought for $50 from a junk dealer, it is not a place I enjoy spending my time. I usually end up with crushing leg and hip pain after spending more than twenty minutes in it. Besides, I’d rather walk whenever possible, just like every other invisible illness spoonie I know.
Part of me hoped that the incident at the elevators was an isolated incident. Maybe the guy was just having a really bad day or had just dealt with something I was completely unaware of that had caused him to react poorly to me. I wanted to give him and the organization I loved the benefit of the doubt. Even if that wasn’t the case, I reasoned that if he didn’t understand things like “rare genetic disorder” or “Ehlers-Danlos Syndrome” perhaps he would understand “heart condition.” Mostly I was hoping he would remember me and just let me pass, or someone who actually understood that not all disabilities are visible would be there.
No such luck, on all accounts. Once again arriving at the elevators we received the exact same treatment as we had before the bye week.
I had been looking forward to the game against the Saints more than almost any other game of the season, but I could barely tell you what was happening on field. I was so upset at being treated this way yet again that I could barely even think straight. By the half, my husband admitted he was having the same problem and that he wanted to leave. I was more than happy to oblige. We made our way out of the stadium, knowing it would be the last time we would make the trip.
I have no idea what it is that the Bengals hope to accomplish by their handling of the elevators. They appear to be reserved for their most affluent patrons, their employees and people with visible physical disabilities. Clearly, if you have an invisible disability, they attempt to intimidate you away from using the elevators, something which is unequivocally illegal by local and federal law alike. It is not the responsibility of any organization to determine whether or not someone is truly disabled when seeking accommodation. It is their job to provide accommodation when it is requested by an self-identifying disabled person, period. The vast majority of disabilities are invisible.
Putting it into Perspective
Invisible disabilities include everything from rare genetic collagen disorders and heart conditions like mine, to connective tissue disorders like lupus or rheumatoid arthritis, to neurological conditions like multiple sclerosis to conditions like chronic kidney disease or gastroparesis. Some of these conditions have nothing to do with how your limbs work or your mobility, but they come with their own unique set of challenges to mobility, from extreme fatigue to risking bodily harm from increased heart rate, to a risk of falling or fainting which makes traversing stairs and ramps unwise if not impossible.
Just because someone appears whole does not make them so. When an alternator stops working properly on a car, it doesn’t change its appearance. It might even work right some of the time. You might not even know there’s anything wrong with it. It’s much the same with invisible illness. You don’t know anything is wrong until you look under the hood, so to speak. Appearances can be deceptive. Disability does not discriminate. It knows nothing of age, sex, nationality, race, creed or sexuality. It cares not if you tithe weekly to your church, vote red or blue, love your children or eat vegan.
The single most important thing to remember about invisible illness; it’s never the place of any person or organization to question or judge whether or not a person is disabled. Not only is it illegal, it’s senseless, wrong and emotionally damaging to the disabled person receiving such treatment.
Imagine questioning your own sanity for over 19 years while your health slowly falls apart and you grow sicker and sicker. Doctors come and go, scratching their heads and sending you on to someone else. You live in endless suffering and torment. Your head feels like it’s going to be ripped apart, your spine is on fire, your vomit for days or sometimes even weeks and your whole body aches. Your joints dislocate with barely a movement and you can’t even bear the smell of something as simple as coffee or a hint of light. You’re locked behind your bedroom door immersed in darkness as the pain and symptoms eat away your very will to live as friends and family trickle away one by one because they never really believed you were ill or simply got tired of waiting for you to get better. While all of this goes on, you see more doctors and even more. While some clearly believe you, others label you “drug seeker” or try to send you to a psychiatrist, convinced it’s all in your heard.
Imagine, after 19 years finally finding the right doctors with the right knowledge and tests, a proper diagnosis! Only now you realize there are no cures or even medications for your condition. This is just a tiny bit of my story and it is in no way unique. The average time of diagnosis for patients like me is approximately twelve years. Now imagine enduring all this disbelief and denial and being subjected to this treatment at the elevators of Paul Brown Stadium, 19 years of this treatment at your back, guards sneering in your face.
If you want to take the measure of a society, just look at how they treat their most vulnerable members. The Bengals fail this simple litmus test. They lose nothing by accommodating those with invisible disabilities with dignity and respect. By attempting to bar them from using the elevators or attempting to intimidate them out of asking to use the elevators at Paul Brown Stadium, they are breaking the law.
Whether what I experienced is based on current policy or just the individual practices of one employee, this never should have been an ongoing situation and in other organizations, it absolutely would not be, because proper employee training can easily prevent such situations. It also took place with several other employees watching both times and no doubt happens repeatedly every game. This to me says this behavior is openly accepted and therefore employer sanctioned.
Management’s Response to My Complaint
When I sent a letter to the organization explaining what occurred on both occasions and asked them to take measures to address the situation on behalf of all disabled visitors, I was told by my account executive that there is training in place and that he was very puzzled by this report. He assured me he spoke to the proper managers and they would take care of it through further training. Then he offered me a special elevator pass to ensure I wouldn’t be questioned for the remainder of the season if I would take my tickets off the market. This was the only solution offered.
Having worked in marketing and sales, I’m quite familiar with the well crafted apology letter to assuage an irate, offended customer. This one was quite well written, but it had one major, glaring flaw which makes me certain it’s nothing but lip service: If this isn’t an organization wide problem and it’s going to be addressed in training right away, then why would I need a special pass to ensure I’m not going to be treated like a sub-human piece of shit for a third time? More importantly, how would this special pass help anyone but me?
I may be physically disabled. I may even suffer from cognitive impairment due to my illness, but for the most part, my common sense still works pretty well. I’m not looking for individualized special treatment. I want revolution. Nothing short of fixing the problem for EVERYONE will do.
Until then, a Bengals fan I will be no more.
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