Preparing for the birth of my boys, I read all sorts of conflicting articles about what was best for my babies. Some typical topics
included breastfeeding versus bottle feeding, cry-it-out versus attachment parenting, and organic food versus non-organic. I wasn’t prepared for the shear amount of difficult decisions or for the upcoming criticisms of whatever I chose, but it was clear I wasn’t the only mother having to make those choices. All mothers were.

However, when my youngest son became chronically ill and diagnosed with Ehlers-Danlos Syndrome, there was a loneliness in the decisions that I had to make. It was completely overwhelming.

When should I take him to a new specialist? Are the medications sufficient? Will we financially be able to cope with the medical bills? What about side-effects? Could he tolerate another invasive procedure, surgery or test? Does this accommodate his special diet? When will he use a mobility aid? Should I let him play on the park playground? How do I teach him about himself and how do I teach others? Is he having a quality childhood? When do I worry? When do I not worry?

 

As if these never ending decisions aren’t enough to handle, the unsolicited advice and criticisms took on a life of their own. I would get personal messages about what type of new and improved supplement my young son should be taking. I was told he shouldn’t do this physical activity, but he needs plenty of exercise. I was sent many diets and programs. It was a solid trail of “you should” or “you shouldn’t” or “why don’t you.”

I knew the “solicitors” weren’t meaning harm. I knew that, but what I really wanted was a hug, or reassurance, or someone to go to lunch with to take my mind away from it all. I think sometimes this “advice” originates from others wanting to do something to help. Friends and loved ones can feel helpless and want to do something, anything.

Well, here is something you can do: listen, ask questions and be present.

Please don’t run or retreat, and don’t offer unsolicited advice. As mothers, we do the very best we can for our children. It isn’t easy to have a sick child. There isn’t a handbook or golden rule — as much as I sometimes wish there were.

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by DragonImages

RELATED VIDEOS


I can write a very long list of the ways my chronic disorder, and all the comorbid illnesses that go along with it, have redirected my life. At first I could only see the negativity. I felt robbed of my life’s plan. The bitterness and pain caused me to shut out most.

When my self-pity and anger festered too long, I realized I actually had a choice. I could isolate and distance myself from those who love me, or I could share my reality and welcome comfort.

What I found, at first, was that neither worked for me. Isolating people who loved me wasn’t the answer. I wrote hundreds of dark poetry, as I found writing to be a way of expressing myself. I felt an immediate high by releasing the negative energy from within onto a sheet of paper or my laptop. It was temporary. I shut out the absolute best people because I feared what would happen if I shared my story.

So, I did it.

Regardless, I exposed layers upon layers, detailing the journey I had been on since my symptoms started over 20 years ago. What happened next was the most painful and ultimately rewarding part of having a chronic illness. I lost friends. I was ridiculed, I was called a hypochondriac because “there is no way one person could possibly have so much wrong.” I was told I looked healthy and wanted attention. The gut-wrenching torture of hearing “friends” break me down in my ultimate time of need confirmed why I originally encased myself in a “protective shell.”

As “friend” after “friend” and even family members mocked me, an unexpected transformation happened. I had an epiphany. I realized my illness had given me a gift. It was weeding out the people I shouldn’t have in my life with those who deserved a precious spot. Old friends were replaced with new ones and my tribe contained to a select handful.

Now, when I look around, I have genuine, kind-hearted and compassionate people surrounding me. So, no matter how long a list of contention I have toward my genetic disorder, the gift it gave me outweighs it all. After all, isn’t life ultimately about being surrounded by the people who love you most? I sure think so.

We want to hear your story. Become a Mighty contributor here.


In my house, there is a bar. It is a small corner bar behind which we have stored over a decade of gifted and acquired alcohol we rarely drink. My roommate is a bartender, and we lovingly call the bar the Broken Bodhran, with a celtic knot work drum hung on the wall above it. The wooden bar corner stands at a right angle from the far wall of the room, and past it is the door to the hallway. The height of it is about a centimeter below my hip bone, which I know, because in the first year I lived there, I had a bruise in that spot almost constantly.

 

After we realized my aunt had sported the same bruise for years, we used foam padding to cover the corner of the bar. We began EDS-proofing other spots in the house where we ran into door frames or tripped over things, and stairways which were dangerous got landing lights. I put bright colored post-it notes on the doorway to my room, like air traffic controller flags meant to wave me down the right runway.

Proprioception: from Latin proprius, meaning “one’s own,” “individual,” and capio, capere, to take or grasp, is the sense of the relative position of one’s own parts of the body and strength of effort being employed in movement.

Injuries are a common complaint that leads to an EDS diagnosis. Constant sprains, particularly the same joints over and over, with no breaking of bones, are strong indicators. By the time I was 17, I had severely sprained both ankles and wrists multiple times, and dislocated my knee once. During a Live Action Roleplaying event, I got run over by a man twice my size while wearing flimsy ballet flats. The bones in my foot jumbled like marbles in a sack and I panicked, hastily shoving them back where they belonged just to get rid of the wrongness feeling under my skin.

In my 20s, I got a tattoo along my upper spine, and discovered it to be the most painful ink I’d ever gotten. I leaned with my chest against the back of a chair and squeezed the metal bracing so hard I dislocated my hip. I had physical therapy for four months to make walking less painful.

Kinesiophobia: an excessive, irrational and debilitating fear of physical movement and activity resulting from a feeling of vulnerability due to painful injury or re-injury.

It’s challenging, to explain to someone how proprioception and kinesiophobia strain your mobility and make it difficult to function. Those two things together seem like hypochondria and anxiety, like two issues people think you should just be able to “muscle through” and “overcome!” Except, they aren’t.

Imagine you had a part of you constantly wailing that the sky was falling. Kinesiophobia is my Chicken Little, assuring me I will hurt myself if I do that, that I must always be careful. It is the drop in my stomach when my heel comes down on a step just a little bit off, and I tense and panic and snatch at the railing. It is the steady increase of anxiety as I get tired, because I know the active observation that replaces my crap proprioception gets lax when I’m tired. I do a task a thousand times, and on the thousand-and-first time, I turn my ankle.

So, as you can guess, the worst part of my Chicken Little is that the little craphead is right. The sky is falling, and he’s got the evidence to prove it. I have a lifetime of strains and sprains and utterly ridiculous injuries like tripping over my own foot or falling up the stairs that he calls on.

woman wearing a baseball cap and giving a thumbs up

What do you do when your Chicken Little is right? I save the strength, and I use my resources wisely. I use a chair sometimes not because I can’t walk, but because pain is exhausting and I don’t need to walk into a door frame today. I pace myself, and I take on intellectual tasks over physical ones because they don’t demand I use up my resources before I’ve climbed the stairs to my room for the last time that day. It doesn’t quiet the voice in my head constantly alert to the possibility of injury, but it does give me the wherewithal to handle that voice.

The sky is falling!

It’s OK. It’s always falling. I got this.

We want to hear your story. Become a Mighty contributor here.


“It’s OK if you just wanna throw up your hands and say, ‘Life sucks.'”

There’s a lot of comfort in having a community where I am open to talking about the good, the bad and the ugly when it comes to my many chronic illnesses. But sometimes, when people try and start up a conversation with me about my health struggles, it ends on a very flat, unattractive, conversational note that makes me question afterwards the other person’s true intent.

 

It starts out as a normal chat, facts about my life and my health. But then all of a sudden it ends with this quote: “Admit it, your life sucks! It’s too difficult. Just say what everybody wants to hear. Maybe sometimes even you want to hear it yourself, so just say it.”

In between multiple ER visits and a wild goose chase after unbearable symptoms no one could identify, I’ve had some difficult conversations with my mom about life. There have been moments in the past I felt like I was being held in the bottom of a boat, a level 10+ on the pain scale, a never-ending pounding sound ringing in my ears and an empty stomach screaming for water and food, for the agony to go away.

After I experienced those moments, I didn’t come walking out into the sunshine with a banner over my head saying, “Life Sucks.” I came out crawling on my hands and knees, barely able to say a word. And if I could have said something then, I wouldn’t have admitted defeat. I walked on fire for that long and made it out.

Yes, I did ask myself, “why me?” in the moment of debilitating pain, but as time passed and I got on a better medication so I could eat and drink and finally had some hope as to what was really causing the pain, I started praising Jesus.

And because of that joy and that praise after walking on literal fire for so long, people give me side looks and facial expressions that are equivalent to question marks… “If she really had experienced level 10 pain, she wouldn’t be acting like this.”

My reactions to my life experiences are mine, not yours or somebody else’s or your neighbor next door who has the same illness. Mine. They’re not always perfect reactions, I will admit that, but once I have everything in perspective and lined up for the future, I am not admitting defeat. I am just getting started on the battlefield. With God and my family, the people who have seen me at level 10 and level 0 regarding pain, I wake up every day and I fight against the possible reality of level 10 pain, ER trips, no results, no relief.

black and white photo of a woman's face

When one battle is over, I take time to rest. Then I get back up and prepare myself for the next storm. I stand amidst a field of giant diseases, chronic issues, larger than life fears and I face them all with a banner that reads: “Whatever my life, whatever my fate, I will not admit defeat.”

We want to hear your story. Become a Mighty contributor here.


It’s 2 a.m. and everyone else in my house is sound asleep. The pain from Ehlers-Danlos syndrome has jolted me from a nightmare where I was Arya Stark and “Needle” wasn’t quick enough, nor was my protector, “The Hound,” from a random jab from a faceless backstabber.

The stab was in the exact spot where most of my pain has taken over my back. Asleep, my mind conjured up fantasies and jumbled up the last episode of Game of Thrones I had watched hours ago to incorporate the justification of pain waking me up. Dazed, I quickly looked around for “Needle” as to defend myself before I realized I was neither Arya Stark nor anywhere close to Winterfell. The only remnant of that brutal nightmare was the pain stuck under my shoulder blade, so deep I could vomit.

 

I feel immobilized by the pain and too exhausted to move, but I know it’s not going to allow me to sleep. I have to get up and find something to dull the pain and inflammation and promptly get me to get back to that bar. If I fall asleep quick enough I am sure I can reconnect with the coward who dare stab a ͏young girl just looking for a bite to eat.

I’ve done it plenty of times. After waking from a nightmare, I accidentally fall back asleep to resume my unwanted position. This time I wanted it. I wanted to feel like the pain wasn’t coming from my genetic disorder. I didn’t want it to come from anything but a bloodbath of a battle where I was fighting for my life – because that’s what it felt like. That’s exactly what it felt like as I stumbled down the stairs, angry I never seem to prepare a bedside, “lifesaving,” sleep-inducing concoction of Tylenol PM  and ibuprofen with a bottle of water. No, I ignorantly forget that step as my sleep-deprived body climbs into bed each night.

My “sleep-drunk” body finds its way to the bathroom downstairs. I’m careful not to make too much noise or even further recognize that I’m past the point of returning to seek my revenge or adding a new name to Arya’s long list of those who must die.

No. Now I’ve been up too long to be Arya Stark. Instead I crumble on the sofa, in a position I’m sure to regret in a few short hours. I try to will myself back to a place where pain actually makes sense to me. It makes absolute sense to feel like someone has stabbed you in the back when they have. However, it doesn’t ever seem to make sense that there are no gaping holes in my body accompanied by my pain. There is no blood gushing out to justify my disorderly walks and physical weakness.

I lay there on my sofa in a fetal-like position with no visible wounds but tears streaming down my face as I wait for the PM portion of my Tylenol to start working. I wish I had something stronger to dull the pain – but my pain management choice, that I regret each time I’m covered in tears, will work just enough to dull me back to sleep until I can figure out a better solution.

It’s that moment when I realize, although I don’t have gaping wounds, nor am I dripping with blood, my pain is as real as any warrior in the middle of a battle. It’s a battle I fight each day, without a sword, without a protector, without someone to validate that I am indeed in pain. Naysayers don’t doubt the pain from blood, but they do doubt it in the absence of it. In a few hours, I will wake up with the same pain and I will have to become a fighter all over again. I fight when I’m awake and it doesn’t stop while I sleep – my mind is just more creative then.

woman with blonde hair in a white tank top

Maybe instead of fearing the nightmares, I can look forward to the new warrior I morph into between night and day. I would choose Khaleesi and walk through fire, unscathed, just for a break from the brutality of it all. After all, make no mistake – those struggling with chronic pain are the strongest people I know. They are, in my mind, true warriors.

We want to hear your story. Become a Mighty contributor here.


It was with trepidation and bated excitement that I placed on my helmet and slipped into the seat that was about the same height of a wheelchair. I situated my legs into the fiberglass trays in front of me, attaining the reclined “recumbent” position I know is helpful for my heart as well as my easily aggravated hips and knees. On both sides of my feet, just in front of the handlebars, are two wheels – giving the bike more the appearance of a backwards trike with its one wheel in the back. I tightened my seatbelt, fastening myself into the sleek yet alien vehicle below me.

I was about to try the Nuke Offroad Recumbent Handcycle by ReActive Adaptations. Would this even work?

My hands wrapped around the crank pedals – I first pedaled backwards to check the strain on my arms and to see if my shoulders could handle the movement without ending up in a compromised and painful position. I had expected to use each hand independently in an alternating motion just like with foot pedals, so I was surprised that both hands stayed locked in tune with each other. Oh yeah, I guess this makes more sense – it’s easier to allocate more power this way.

I hadn’t gone anywhere yet, this was just a quick check-in to test if the range of motion would flare up the nerve pain that shoots down from my neck, through my shoulders, elbows, and into my fingers. Stationary, I tentatively wiggled the crank to see how I could control the steering, then slid my arms out to the side and lower to the handlebars. The seat seems to offer the right amount of support for my spine. Stunned, I realized this could actually be a feasible possibility for me. With my shoulders’ tendency to dislocate, not to mention my flimsy wrists and fingers or my neurological symptoms and heart troubles, I wasn’t sure if I would even be able to handle the range of motion required, but the bike and I have passed all of my preliminary tests.

Now the excitement is really beginning to kick in.

I take a quick look at the shifter and am pleased to see an entire 16 gears there at my disposal, in case my not-entirely-reliable muscles would experience a sudden shift in control or power. I try my hands on the brake, hoping I still have the strength in my hands to get them to engage. I released the brake and started off a bit rockily, slipping backwards a bit because I was parked on a slant. I looked at the trail ahead of me and balked – I don’t think I can do this. After a quick suggestion that I should try it on the road, I check my neck brace, shift to the lowest gear and start to toil. I reach a slight slant and am shocked that I can make it up alone, but feel the burn in my muscles and am not sure how long I’ll be able to continue.

I get up to the parking lot at the top and start heading down – slowly at first, but once I realize I feel more stable than I can ever remember feeling on a bike, I let loose – speeding down the little hill, a smile cracking my lips and giddy laughter escaping off of them to echo in the surrounding mountains. The moment I get to the bottom, I immediately start trying to figure out how the heck to turn this thing around. There’s no reverse option I’m aware of, but I manage to use a nearby slant in my favor, shift back down to the easiest gear, and slowly but surely make my way back. This time is even harder than the first – my muscles are screaming and my breaths are coming in short and labored. I have to pause and snap on my breaks a few times for a short rest, but I make it back up to the top. This time I hit the downhill with as much momentum as I trust my arms to muster.

Sheer ecstasy! I haven’t gone this fast in years – suddenly I’m 10 years old again, speeding down the neighborhood hill racing my sisters, transported back to a time where my symptoms didn’t play such a prominent role in my life. As the wind rushes past me, I can hardly believe how carefree I am: no worries that my depth perception is off and I’ll slam into a tree or parked car; no troubles with my balance, threatening to topple me onto the unforgiving concrete; no unpleasant crunch of my kneecaps slipping in and out of place. Although some of my various neuro symptoms persist (wonky vision, weakness in my left side, etc.), I don’t feel like they in any way compromise my safety in this moment, as the low center of gravity and three wheels offer a stability I’ve never experienced.

However much I love biking, and although it has at times been easier for me than standing or walking because of how being in a seated position strains my heart less, I haven’t been able to fully release myself to that jubilation for several years now. Even though I used my bike as my primary mode of transportation out and about through all kinds of Iowa weather (sun, rain, snow and ice), I was always dealing with those fears. One of those winters I was having bouts of partial paralysis each day that would last between 30 minutes and four hours, but I would still hop on my bike to get around. In the last three years or so, that’s gotten more difficult and even impossible as my joint instability and balance problems have progressed. I miss having an independent mode of transportation and a fun way to be active. My balance has declined and I have a higher baseline of full-body chronic pain, as well as more frequent dislocations of most of my joints and some spinal damage. I’ve been building myself up the last two years with physiotherapy regimens, plus time water-walking and doing exercises in the pool, as well as spiral dynamics and electrotherapy for my muscles. But no matter how healthy I can manage to get myself, any fun sporty activity I try is too much and will leave me reeling for weeks.

I grew up hiking. I love hearing the crushing of gravel, smelling the freshness of the pines and spruces, and seeing the expanse of nature stretching out before me. Hikes were never quite a walk in the park for me – my sister and I would slow as our legs got heavy and my limbs were often filled with a pounding, grainy pain that worsened with each step. As kids, we’d complain that “our legs were broke,” and our parents turned it into a game, coaxing us onward with promises of trail mix and other sweet treats if we could just make it to that next boulder, that bend in the path, the place where that squirrel is. For many years now, any trail has been as much of an ordeal as a joy. No matter which mobility aids I used or how short or flat or slow the hike, it would strain my heart, make me dizzy, raise my pain levels drastically, and require a massive recovery time, making it much harder to enjoy. But with the help of this excellent handcycle, I could finally experience all of the good stuff while keeping the bad stuff mostly under control.

Confident that I understand the physics of the bike and am capable and indeed in control of this thing, I skeptically make my way off the road and onto the trail. My dad coaches me on how to slowly make my way – offering the occasional gentle nudge up a particularly stubborn incline and helping to bail me out when I misjudge how exactly to maneuver my new rig. I’m starting to feel comfortable with my steering and the new, gravelly terrain. All right, here we go: there’s a sharp turn ahead and then a pretty good decline over a medium-sized distance. The trail is clear all the way and despite its descent, has a few small little waves that look like fun. I take off! Once I hit the first wave, I shriek joyfully, increasing my speed and cackling, suspended in an odd state of disbelief and utter glee. With only a few feet of trail left, I come to a shrieking halt – only then realizing that I’d broken the peaceful tranquility of the trail and rocketed past a couple resting on a scenic bench, who stood up to clap and tell me that was neat to watch, and then ask me a few questions about the bike.

I’m alit with excitement and tackle a large loop of the trail after that. I push myself hard, getting my heart going faster than I’ve been able to in a long time. It is just like old times, minus the unpleasantness that always eventually brought it to an abrupt and painful halt. I enjoy another rush from a practically endless descent – leaving my dad in the dust – another feeling I’m not all that familiar with anymore. I slow to a steady pace, tears filling my eyes, voice crackling with an overwhelming happiness and pride, truly acknowledging and appreciating the awesomeness of this experience.

This is an exciting new chapter – a possibility. A chance to get even stronger and perhaps healthier. A chance to feel safe on a bike or just to be on a bike in general. I found something I never imagined I would be able to do again. It also seems to have the targeted muscle-building I need to protect my spine from further damage, while also being perfect for my individual physical limitations and requirements. It’s a chance to once again be an athlete and feel my emotions fluttering as the wind rushes by me, and an opportunity to get around independently without having to rely on a bus or other transit.

Afterwards there was no paralysis. No unbearable increase in fatigue. There was some pain, swelling, and soreness, but nothing I can’t handle. I have no regrets, only excitement and impatience for the day I’ll be able to have one of these glorious contraptions myself. At about $10,000, it’s nearly triple the largest amount of money I’ve ever had at my disposal at once. I’ve looked up other more cost-effective options, but nothing else fits well with my body and disability. But I’m excited that there are many grant opportunities out there to apply to, and I’m hoping this is something I can save up for soon! I am so truly happy that something like this exists and that I’ve had the chance to try it, and will one day be able to roll on with its help – conquering new terrain and experiencing the joy it brings!

We want to hear your story. Become a Mighty contributor here.

Photo by contributor.

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.