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To My Chronic Illness — We've Got to Make This Work

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To my chronic illness,

Once in a while I get a little fed up of dealing with you, and a little too tired. But, then again, I’m a little too stubborn to give up. I’ve got annoyed with you, annoyed with myself, and annoyed with others around me – even though I know deep down, they only have my best interests at heart. I’ve got aggressive with you, and in the past, got to the point where I’m just damn-well fed up with you, but you’re always there, as stubborn as I am.

Don’t get me wrong. You’ve taught me so much. Then again, I look at what you’ve taken from me and wonder whether it’s a fair balance. Some days, I just want to walk away from it all: The constant pain, the frustration and the struggle, but I know you’re stuck with me. And, as much as I hate to say it – I’m stuck with you. So, somehow we’ve got to make this work.

Don’t get me wrong, you’ve given me mountains to climb, and a whole load of rocky journeys along the way, daily subluxations, dislocations, immense pain, exhaustion and a whole load of other rocks in the road. And when I think about just the negative, I think, “How on earth is this even fair?” But there are always two sides to every story, always a silver lining in the cloud.

When you test my pain threshold, you teach me the true meaning of strength. You teach me that the saying, “no pain, no gain,” doesn’t quite work for those of us with chronic illnesses.

When you challenge my ambitions and dreams, putting a fork in the road, you teach me that, “good things come to those who wait,” and never to give up on something you believe in – even if no one else does.

When you take me past the point of exhaustion, you teach me how to run on empty. No matter what,  “you dress up, show up, and never give up.”

When you test my relationships, you show me who my true friends are. Friends that will never leave my side, no matter how far away they are.

When doctors don’t hear the hoof beats, and don’t quite know what’s going on, you’ve given me perseverance and the ability to fight in my own interests.

And finally, when you make me feel like I’ve had enough, you make me realize that even with such an illness that affects me every minute of every day, that I can still do this, because dreams are there to be chased.

So now, when I look at the balance, it is a little more that: Balanced. Every cloud has a silver lining, no matter how difficult it is to see on some days.

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Thinkstock Image By: bruniewska

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8 Ways Ehlers-Danlos Syndrome Makes Me a Superhero

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Most people are surprised to learn I’m an Ehlers-Danlos syndrome (EDS) superhero. I look fine on the outside, but underneath my unassuming exterior of hoodies and glasses is the powerful flowing cape of EDS, a rare genetic disorder that causes defective collagen.

Because collagen is present in every cell of the body, this leads to many serious and seemingly unrelated health problems. So it’s true that exhaustion, pain, and brain fog often overwhelm me and tie me to the couch. But when I emerge from the fog, I find I have the ability to transmute the energy of the forces of evil for my own purposes.

1. I have X-ray vision.

My X-ray vision makes staircases and teacups and dinner plates glow with radioactive danger. Cups with small handles bend my finger joints sideways, neutralizing the comfort-giving properties of a hot drink. A dinner plate subluxates my wrist if I carry it with one hand, leaving me a real mess to clean up. And stairs, of course, are for falling.

I see the treachery of mundane objects. And yet, this X-ray vision refreshes my creative energy. I have a slightly askew, rag-doll perspective, and my surprise at what I see motivates me to communicate my findings. Seeing things differently enriches my writing, my compassion, and my self-knowledge. In other words, my X-ray vision fills me with infinite glowing ideas, turning me into a creative mastermind.

2. Stairs are my nemesis.

I’ve lost count of my battle scars and my joint-failing tumbles from my nemesis. But because stairs and I confront each other regularly, my battle skills of mindfulness, energy conservation, and a slightly disjointed sense of humor, are sharp. If I take enough steps back from that staircase, I might even see the slapstick absurdity of seemingly random floppy flailing.

Because I know my nemesis intimately, a staircase never sneaks up on me. I gain strength in every vulnerable climb or descent, because each is an opportunity for courage. I see you, staircases. Bring it on.

3. I have an invisibility cape.

People say invisible illness needs to be exposed and recognized and, yes, it can be lonely and infuriating to be invalidated for “not looking sick.” Like everyone, I want recognition and acceptance. However. Let’s not forget that invisibility is a superpower. Superheroes protect their power by living their daily lives in relative anonymity.

Invisibility sometimes protects me from others’ insidious assumptions and expectations. If people knew I was an EDS superhero, I might be asked to save the world more often. Or be treated as if my illness were the only noteworthy thing about me.

But invisible, I sneak behind the scenes. I’m protected from discrimination. The strength in invisibility is that no one can keep me from creating the life I want for myself. My invisible cape keeps me safe from my enemies, and I get to choose when to expose information about my superpowers.

4. I have highly developed spidey senses.

My spidey senses work their long legs into both my external and internal worlds, and this sensitivity is not a liability. I have to be miserly with my limited energy, so my intuition about new people and situations is strong. If I feel energized, I move forward; if I feel a ripple of fatigue, I pull back. I get to direct all of my radiant energy beams towards the people and activities I feel passionate about.

My spidey senses also work within my body to let me know immediately if I’m off my well-fed and well-rested track. One skipped meal could throw me off for days, putting me at risk for a tired misstep and an injury that leaves me out of commission for a month. Many unfortunate mortals can neglect their bodies and feel awful for years or even decades before developing chronic health problems. But as an EDS superhero, I have to go through my days feeling as well as possible. My spidey senses give me immediate returns on my well-being.

5. I never age.

Because of everything I’ve been through and my severe chronic pain, sometimes I feel like a decrepit vampire who’s lived for centuries. But my stretchy skin keeps my face unwrinkled, so I look about the same at 35 as I did at 20. I always get carded, and I used to hate it when people sharply underestimated my age. But I’ve learned to transmute the energy of my irritation into strategic intrigue.

Even though I’m a quiet one, which can intimidates people, looking younger than I am can also be disarming. Ego battles with my peers are few and far between, which means I don’t waste my energy on petty competition. And I never fail to surprise people when I reveal my secret skills and knowledge. It seems suitable that I’m quietly compelling. I am a superhero, after all.

6. I’m extra floppy.

In the early 20th century I could have been a sideshow performer stretching myself into a salted pretzel for entertainment. But that hurts, so I’ve undergone intense superhero proprioperception training, through physical therapy, to be able to maintain my posture and alignment.

However, my triple-jointed floppiness potential may save my life yet, such as if I have to squeeze through a too-small window to escape from a serial killer. I’m holding this power in my back pocket just in case.

7. I have an automatic friend filter.

Sometimes I have to cancel plans. This is almost never about the plans themselves but about listening to my body’s spidey senses. In bad pain moments, which are unpredictable, standing on concrete for two hours might cost me two days of recuperation time. So I’m very careful.

Lucky for me, new friends who are offended and/or judgmental in response to my cautious planning get filtered out of my life. As a consequence, the only people left around me are good ones. I wouldn’t change that for anything.

8. I can stop time.

I don’t work a full-time job with regular hours. While I do have to make ends meet, as my own boss I can stop time to take half days, full days, or full weeks off without notice. These vacations aren’t high-energy excursions to tropical beaches halfway around the world, mind you. My “pain vacations” are usually unplanned afternoons in the bathtub.

But because I have full, time-stopping control over my daily grind, I enjoy my work more. I’d choose this over fancy paid vacations any day.

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Thinkstock Image By: SergeyNivens

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My 'Good Days' Do Not Invalidate My 'Bad Days' With Ehlers-Danlos

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two friends dressed up for prom This picture. This year was my senior year and the picture above shows me and my friend before senior prom. We had so much fun. We acted somewhat ridiculous, but that’s who we are. By looking at this picture, you would never know anything was wrong. In this picture, I see two strong, healthy, beautiful teenagers enjoying themselves. I see two friends enjoying their final moments of high school together. I see a night full of lifelong memories.

But what about the part beneath the surface? Because what I don’t see in this picture is the bedridden freshman I was. I don’t see the reality of who I am or what I struggle with. You can’t see that I dislocated my hip while dancing at prom. You can’t see the nights I’ve had to say no to my friends because my body cannot handle hiking. You can’t see the countless hospital visits and doctor appointments and the medicines I have to take every single morning and evening. You can’t see the enormous amount of pain I deal with every day. You can’t see the vomiting and shaking while lying on the cold floor of a bathroom. But these things you can’t see are my daily reality.

But so is the smiling and dancing and fun you can see. So how do those two coexist? Well, my point is to show that my good days do not invalidate my bad days and vice versa. Just because my illnesses are invisible doesn’t mean they aren’t real. Just because I can have a great day and seem totally fine doesn’t mean I am miraculously healed. But also, just because I couldn’t go out that one day when the weather made me feel horrible doesn’t mean I can’t ever go out with friends. There is a balance.

The pain is part of my life. The fun is part of my life. Both of those are things I endure and enjoy daily. They don’t have to contradict each other or negate each other. Remember that sometimes I will have to say no, but sometimes I can say yes. I am blessed to have friends like this guy who went to prom with me who know that my life needs balance. They support me in my enjoyment and fun days. But they respect my decision to go home early or eat somewhere where I can actually get something. They know that they don’t have to fully understand to support me. And I am eternally grateful for the people in my life who carry me through life.

Don’t ever forget that people are more than what you see in that Instagram post. Don’t forget you aren’t alone. What we see on social media or on people’s good days is not all they are. Good days do not invalidate the bad days. The picture doesn’t invalidate the reality.

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Being Subjected to Judgment Because of My Invisible Illness

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The Dysautonomia Support Network, in honor of EDS/HSD Awareness Month, is doing a daily my awareness/my story challenge. When I was adding my little story to Facebook for the challenge, I realized that this one hit a nerve pretty hard.

Day five: Describe how invisible illnesses EDS/HSD subject you to judgment from strangers, friends and family.

This is one I could have done a video of because it’s one of those that hurts your heart. I’d just be a blubbering mess though. When you constantly say you’re in pain, people stop listening. They get tired of it. Then they judge you for it.

In high school, my teachers judged me. They didn’t believe that I was very ill. Really in pain. Even when the principal had to call 911 because I collapsed in the middle of the hall and had be taken to the hospital, they still didn’t believe me. I clearly remembered two teachers who told me I wouldn’t make anything out of my life because of my “so-called illness.”

Friends and family get tired of canceled plans. They may not even realize they are judging me for it. I can understand that they get sick of making plans and then last minute (very last minute) things have to change. It’s one of the ways I’ve lost so many friends. Lost so many connections.

Work. Work is the hardest. Your coworkers judge you for being out even when you work from home, plus doing an extra four hours a day to make sure no one has to cover your job. Your managers, especially those micro-managers, get tired and stop believing you’re in pain. They stop believing you’re at doctor appointments, physical therapy, etc. It gets worse when you have that one good day and you’re able to dress to impress, wear a full face of make-up and do your hair – they don’t understand why you’re not “on the ball every day,” though they have seen you go from a stellar employee to trying to survive each day. They go from friend to manager to enemy. They don’t understand how hard it is to have to physically call them when you’re on your way to the ER at 4:00 a.m. Then when you do – and you’re sobbing or barely able to bring together a coherent sentence – they think you’re acting “childish” or “overly dramatic.” An email won’t do. A text doesn’t satisfy their needs anymore. They manage your FMLA down to the minute as if you’re trying to steal time. They decide that you are faking it or become ridiculously suspicious when you can do some work at 3:00 a.m. because you are unable to sleep and might as well try to cover your job.

And I haven’t even talked about the judgment you get from others if you happen to use your disabled parking permit on bad days. Some days it takes everything to just walk from your parking spot to the front door. You’re young and maybe not in a wheelchair – you don’t “look sick.” Luckily I have not had any nasty conversations or received notes on my car but the fear is there every time I use it.

Wow. I guess this one meant a lot to me. The judgment hurts. Mainly because I can’t help being sick. They may understand, but it still hurts them since I cancelled.

We have to remember others’ feelings too while still taking care of ourselves. It’s a delicate balance.

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Thinkstock photo via Wavebreakmedia.

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How CrossFit Adapts for People With Disabilities

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The fittest on earth. The sport of exercise. Picking up heavy things, putting them down.  Burpees, box jumps and Olympic weightlifting moves. The world of CrossFit may seem like the last place you’d expect to find anyone with a disability. But in reality it is exactly where you should expect to find someone with a disability.

As I’ve continued along my journey of being “differently abled” I’ve found one thing is true – people understand to the level of their perception. Those who love me, know me, or take the time to truly understand have learned that disability takes shape in many ways, it is not the same for everyone, and there are good days and bad days. Those who don’t invest the time in education on the topic may think disability is a cookie cutter diagnosis – one that remains static. As such, those individuals often expect people like me to “perform” disability – there is an expectation that each day will be the same, and that what they see from me matches their schema for what it is like to be disabled.

Sometimes the same is true, but in a different way. I often find the people who know me the best don’t see me as having a disability, which in some ways is a fantastic thing. These friends and family see my unlimited potential, a few differences that make me unique, but never anything that is life-limiting or a disadvantage. However, like when someone says “I don’t see color,” there is an inherent problem with this. The dictionary defines a disability as “physical or mental condition that limits a person’s movements, senses, or activities.” By that definition, as individuals move in to their 40’s, most of us have something that doesn’t work well – so in turn we may all have a disability – a sensitive stomach, migraines, etc. I believe it is how we opt to let these things define us that changes a disability into either a disadvantage or a unique approach to the world.

For the past five years I’ve participated in the extreme sport of CrossFit, finally finding a permanent home at a small box (as our gyms are called) with a set of unique coaches who do not shy away from differences. I remember walking into the box the first day and explaining my Ehlers-Danlos syndrome, its comorbidities, and the nerve damage and spinal cord issue it had opened me up to sustaining. Despite having no clue what any of that meant as an athlete, they welcomed me with open arms and told me we would figure it out – and boy did we. A few years later our box is home to several coaches with their adaptive endorsement, provided by Crossroads Adaptive Athletic Alliance, and multiple seated athletes.

How is this possible in a sport known for extremely chiseled abs, highly tuned athletic ability, and endurance unlike any other? Because in my experience, CrossFit is the most adaptable sport on the planet. If you register for a local softball league, take karate, or join a kickboxing class, there is typically one standard of doing things. The sport of CrossFit recognizes the unique abilities and areas of weakness of each athlete and incorporates that concept into the core of its program. CrossFit inherently adapts itself as a sport for “normal” athletes, not at their peak fitness, those nursing a weekend warrior injury, or someone who just isn’t as strong in a particular area. This is known as scaling, or making an exercise/movement/workout appropriate to the athlete’s level and ability.

An example of this might be a workout that has box jumps in it.  Not only are box jumps a highly ballistic movement, they are something the average human in their first exposure to CrossFit is unlikely to achieve. The “scale” or adaption on this for “normal” athletes is to step up on the box. This achieves the same outcome, replicates the movement, and exposes the athlete to the move until they progress. Ironically, this “scale” is the same for “normal” athletes as it is for someone with a disability such as myself. Depending on the day, my body, and how I am doing I either step up on the box independently or step up holding on to the rig (the equipment used for pull-ups and weightlifting) for stability if my left leg is dragging.  The adaption I had to make as a “disabled” or as we prefer “adaptive” athlete is essentially the same as a normal athlete who simply has not mastered the box jump maneuver.

Can’t walk? No problem; for seated athletes or those lacking the full use of their lower body, the move becomes a transition from wheelchair or floor to box, utilizing the arms, and then back again. As you can see and imagine from the above, in a box with 15 athletes working out, each one may be doing several variations on the movement – but all athletes compete together against themselves – and no one ever feels different for the adjustments they need to make. In this sport, the athlete who doesn’t have box jumps mastered is no different, nor is their workout any different, than the athletes who will never be able to complete a box jump due to a permanent disability.

I recently had the opportunity to participate in the CrossFit Open, an international competition amongst athletes where individuals complete standard workouts and are able to rank themselves against others. Crossroads Adaptive Athletic Alliance and WheelWod partnered to provide workout standards that were challenging but worked to adapt the released standards for each disability category.

I encourage everyone who has some sort of disability, be it permanent, progressive, minor, or major, to look at the sport of CrossFit as a way of gaining strength, independence, confidence, and seeing themselves as the equal of others. In the famous words of Albert Einstein, “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” As I adapt everything in my life, I’d like to adapt that quote saying, “Everyone is an athlete, but if you judge a person on their ability to exercise in one one uniform movement, they will live their life seeing themselves as disabled, and thusly disadvantaged.” However, if you introduce a person to a sport where adapting and scaling is part of the norm, that person will come to see themselves as the athlete they are.

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Spoonies — Show Me Your Spoons

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I’m just gonna go ahead and get this out. Hi, my name is Saidee and I have an invisible illness. Multiple illnesses, actually. Well, they are invisible to most, but they are very visible to me.

I see it in my purple feet, thanks to blood pooling in my legs. I see it in the weight I’ve gained due to exercise intolerance. I see it in my weekly schedule, high on doctor’s appointments and low on social engagements. I see it in the loss of a career I loved greatly. I see it in my daughter’s face when I tell her I can’t pick her up or carry her. What is invisible to many, is so clearly visible in my life. And being invisible can feel incredibly isolating.

An article on umass.edu states that, “It is estimated that 10% of people in the U.S. have a medical condition which could be considered a type of invisible disability.” It goes on to estimate that one in two Americans has some type of chronic medical condition. One in two! Half of the U.S. population is walking around with an “invisible” condition and, yet, most of us are walking around feeling completely alone.

An invisible illness, as you’ve probably guessed, is an illness that isn’t immediately visible to others. Such conditions include: depression, anxiety disorder, Ehlers-Danlos syndrome, fibromyalgia, postural orthostatic tachycardia syndrome, celiac disease, irritable bowel syndrome, and so many others that I could never possibly name them all. These conditions range from common to rare.

I happen to have multiple invisible illnesses which have become debilitating for me. When I am in my wheelchair or using my rollator, my illness becomes visible to others. I have run into many people who are quick to help me or accommodate my needs when I am using a medical device. I get looks of pity and am often talked down to, but that’s a subject for another post.

But when I’m out in public without my wheelchair or my Rollator, I am met with looks of criticism and judgement. I get eye-rolls that read, “God, what a drama queen,” if I’m out and exclaim to my boyfriend that I need to sit down so that I won’t pass out. I’ve had people laugh when they hear me out of breath after walking across a parking lot, yet, they don’t realize that I’m panting because my heart rate is getting dangerously high and I’m on the verge of passing out. I’ve heard several whispers and snickers because of my not-so-fashionable compression socks and leggings. I wonder if they would still be whispering and judging me if they knew that my compression wear is the only thing keeping my blood from pooling in my legs instead of circulating?

How is it that 50 percent of US citizens have some kind of chronic medical condition, and yet, our society immediately assumes that someone walking slowly is just being a pain in the ass rather than having a legitimate medical condition? Even with my wheelchair, if someone sees me stand up and get out of it, their looks go from pitying (not an enjoyable look either) to horrified and judgmental. There are several different reasons that someone might need a wheelchair. Being a paraplegic is only one of them.

Could it be that the reason people have a hard time believing in and understanding invisible illnesses is because they are so often kept hidden? Or is it that we feel we have to hide our illnesses away to make others feel comfortable? Often, as I explain my condition to people, I see their eyes gloss over and their faces contort into an expression that says, “Oh dear God, what do I do? This is so awkward.” They seem unsure of how to handle what I’m telling them. Are they supposed to pity me? Are they supposed to offer solutions? Are they supposed to tell me they’ll pray for me? Or that they’re sure that things will get better one day?

I have heard all of those reactions and more. I end up feeling trapped in this weird place of wondering if I should be honest and talk about what’s going on in my life or pretend that everything is OK so that the conversation doesn’t get weird. But then, I’m not really left with much to say. I don’t talk about my illnesses to get pity or attention. I talk about them because they are a pretty big part of my life right now. They inform most everything that I do. There isn’t a day that goes by where I don’t have to think about my illnesses. Leaving out my illnesses in everyday conversation feels like I’m being dishonest because, honestly, my illnesses are an everyday thing.

A female with a spoon on her nose.

So, I choose to talk about my illnesses. Not because I want to make others uncomfortable, but because I want to make it more normal to talk about these things. I don’t want to be afraid to tell someone that I’m getting dizzy and need a break just because society says that I’m supposed to suffer in silence. I don’t want to shy away from telling people what I’m feeling, or being honest with myself, because I’m afraid of judgement. Because, the truth is, I know a secret that society doesn’t seem to know.

I know that my illnesses are a sign of strength, not a sign of weakness. No matter how bad things get, and sometimes they get really bad, I know that I will continue fighting. I will continue to try to find the best in each situation. I will continue to try to find new ways to combat symptoms. I will continue to try to be the best mother, girlfriend, daughter, teacher, etc., that I possibly can be – even if those roles look very different than how I hoped they would. And I will continue to fight for others with chronic illnesses, to erase the stigma that keeps us hidden away from the world. I will continue to be a warrior, just like every other person who is battling a chronic illness.

This is where I call on all of you to help. Let’s make the invisible visible. I’m calling on all Spoonies out there, whether you are disabled or not, and all Spoonie supporters to, “Show me your spoons!” If you are up to the challenge, then take a picture of yourself with a spoon (preferably hanging on your nose because…well, because it’s fun) and post it to social media. Tag it with #showmeyourspoons. Some other tags I’ve used are #endthestigma and #maketheinvisiblevisible. Feel free to share what chronic illness you are fighting, but it’s also OK if you aren’t ready to share that yet. Just sharing your spoon is enough. Let’s show the world just how many of us there are!

Follow this journey on Spoonie Warriors.

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Thinkstock Image By: AlexRaths

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