What My Ehlers-Danlos Syndrome Feels Like as I Type This Blog Right Now

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Right now as I write this, the words are morphing across my vision as they’re added to the page; a dizzying tango alternating from being blurry, to doubled, then perhaps wavy, almost as if they’re sitting out on the pavement in the hot, summer sun. I often have to close my eyes to give them a break and also make sure their little muscles are tracking properly.

In addition to that, as I reach for each key, I often have to retrace my steps, hit the delete button, and then stop again when I realize I missed that key entirely. Instead of correcting my typo, I just added to it since my depth perception and proprioception are always a bit off. At least typing this story doesn’t have the consequence of running into the occasional wall, mistaking it for the doorway I thought I was walking through.

But I digress.

Back to the troubles of typing: I’m wearing my finger splints, but even with their help I have to keep in mind how frantically I’m typing, how much pressure I’m applying, what position I’m holding my hands in — I don’t want to dislocate a finger or some other bone in my hand.

If I sneeze or hiccup, I wince with pain and make sure I haven’t dislocated a rib. I can’t remember the last time I made it a day, or even a few hours, without a dislocation or subluxation (partial dislocation). I hardly ever sit at a desk because that simply doesn’t provide enough support for my back. I prop pillows all around me and keep thinking of what core muscles I need to engage to keep my spine aligned and my hips in place. My muscles spasm from the effort and I ache all over.

I am aware of a warmth and throbbing in almost all of my joints, a pain that feels like it’s spreading across every fiber of my tissue and muscles, because it is. There’s a defect in my collagen, the protein that acts as a major building block in the human body, and this makes all of me extra stretchy, which causes micro-tears to form and get bigger with every slip of every joint. The joints get more aggravated, the bones knock together and get bruised, tiny fractures start to appear, you name it. And the nerves nearby aren’t really fans of all that. The pain is always there, at various strengths, throughout my entire body.

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Guess what?

All of that is background noise compared to my most prominent symptom. My head is too heavy. I can barely hold it up. And when I do, I am drastically more dizzy and lightheaded than when I don’t. I feel this weird empty feeling at the back of my head and near my forehead — an odd sense of pressure — almost like I’m really far underwater, or in a big, echoing chamber. I feel disconnected from my limbs. I feel like I’m falling backwards, or floating upwards, or a bit like there’s an accordion in my head, stretching and squeezing unpredictably.

That little bump right at the base of my neck, you know that place where it stops being your neck and turns into your back? It feels like someone has their hand placed there, and they are pushing down on me as hard as they can, applying all of their weight. On bad days, it also feels like two nails nearly the size of railroad spikes are being driven between my shoulder blades, right along each side of my spine. At the same time, I have that “fingernails on a chalkboard” sensation shooting up and down my entire spine, a sickening, inescapable sensation.

After each sentence I have to pause and support my neck with my hands to offer slight and temporary relief. I might need my neck brace to help me out for a bit. Even sitting for the time it takes me to write a few paragraphs can be too long sometimes, and I opt to lie on my side. I might try to continue typing with one hand — because I’m on a roll, dammit, and I don’t want to stop just yet!

Eventually I have to decide whether or not I’m physically capable of continuing with my writing today. Or maybe I’m feeling too distracted by all of this and can’t seem to get a proper train of thought out, and lay it aside for that reason.

This is what Ehlers-Danlos syndrome feels like to me on a typical day. There are other days where writing simply isn’t an option, where getting out of bed seems like a painful, impossible task (and sometimes it is, depending on whether or not I can move the left side of my body). Sometimes I have massive headaches and more prominent neurological symptoms and I need to make sure that I’m not leaking any spinal fluid. But even on bad days, I end up doing between 30 minutes and 2 hours of physical therapy, just to keep my body from falling apart so quickly.

Despite all this, I write. Because of all this, I write. I am not my Ehlers-Danlos syndrome. It is, however, a huge part of me. It is a part of me that’s been an uphill battle to accept. It’s something that has really shaped who I am as a person, what my career options are, what my free time activities are. It is something I’ve had since I was born. And it is something I will have until I die. It is also something that has always been a huge question mark to me, as well as most of my doctors.

But I want people to know what I’m dealing with. I want people to understand, or at least notice that there is a lot going on in my body that the untrained eye (or even the trained one) cannot see. That despite that, the struggle is real. Writing gives me this platform, this stage where I can let out my emotions, portray something, move people, get them thinking.

I want there to be a day where I don’t have to explain my genetic connective tissue disorder to a new doctor, but rather where more doctors will be able to identify it in other people and help them sooner than they were able to help me. It took over five years of actively searching for a diagnosis before I find out about my EDS, and that needs to change.

If I have to think about that much while simply typing on my laptop on a good day, imagine what it’s like for me to stand. To walk. To lift something that weighs kind of heavy (or kind of light even). To open a door. To pick something up off the floor. To climb stairs. To do laundry. To cook.

Are our definitions of an easy task different? Are our definitions of “lazy” different? All of those things take a massive amount of effort for me, and some days I simply can’t do them.

I’ve been called strong by many, and I thank them for their compliments, I truly do. I feel like I’m only as strong as I am because I have so many people supporting me and telling me what an awesome job I’m doing. But the number of times I’ve been called strong is practically non-existent in comparison to how many times I’ve been called other not-so-nice things.

I’ve been called lazy and weak by countless numbers of people. Crybaby. Attention-starved. Liar. Drama queen. Master exaggerator. The list goes on and comes from an arrangement of strangers, acquaintances, colleagues, friends, and even family. But all of these people have one thing in common regarding me: misunderstanding. And perhaps a lack of empathy. They have not felt what I feel. Maybe they don’t know my story yet. Maybe they can’t see my pain because I’ve learned to hide it with a smile. My experience is not what they experience, so maybe they simply didn’t know it exists.

I’d like to fix that. I want people to know it exists. A few other things would be nice as well: Acknowledgement. Acceptance. Respect. All I ask is that you just try and step into my orthotically enhanced shoes and see things from my perspective before you make a judgement of me and my character. I will do the same in return.

Thank you for reading, and 10,000 more thanks you’s for taking the time to look at life through my eyes for a moment.

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The Pain of Losing My Best Friend After I Became Ill

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She was my best friend. She was my sister. She was my constant. Yet in my time of need, she left me. She stood up from the lunch table and called me a faker. Not only did my health go downhill, but so did our friendship. My Ehlers-Danlos syndrome turned my life upside down. My future is now unclear, and simple tasks have turned impossible. I always assumed she would be with me through this roller coaster of a diagnosis. Yet, in my time of need she walked away.

As I walk through the hall I hear whispers. Whispers of “Did you hear she is faking?” and “She can walk, what’s with the crutches?” These whispers don’t bother me, except when it’s her. I hear stories of her calling me a faker, a liar, and disregarding my illness. While I take these with remarks in stride, they feel like a stab to the heart. The girl I used to trust with my life has turned into the girl who completely disregards my life. This falling out in the lunch room hurt more than any dislocation could. With dislocations, pain medication can help, but nothing can help this.

There was a light at the end of the tunnel, though. My best friend, Isabelle, pulled me out of this dark place and taught me how to trust again. She has listened to me retell this story to her on the verge of tears, and she has been the one whose shoulder I can cry on. I feel happy to be out of that toxic relationship, but it’s still hard sometimes. I often see my old friend with others and yearn to warn them. I don’t warn them, though. I have realized they aren’t in the same situation. Those people who befriend her aren’t ill. Those people can go to amusement parks and play sports without screaming in pain. I have learned that some people just cannot handle going through what I’m going through with me. These people may be great friends to those in good health, but toxic to those in bad health.

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two teenage girls wearing black shirts with arms around each other
Kaitlyn (left) and her friend Isabelle

I am here to testify that there are people who can be good to you when your health is horrible to you. Almost everyone with a chronic illness has lost a friend to their diagnosis, but these tough times can also strengthen relationships. The real friends make it through your rough days and hold your hand all the way through it. While my illness may never get better, I now see that other parts of my life can. Those of you with chronic illness cannot change your body, but I encourage you to cut ties with toxic friendships.

Losing a best friend may be painful, but finding strong bonds make the pain worth it.

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What You Don’t See Behind My ‘I'm OK’ Mask

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A lot of people say I seem to be a happy person. Others describe me as having a great sense of humor. Although I wouldn’t argue with these descriptions as I often have a big smile on my face, I am hiding a secret. I feel ill every single day. 

Because of Ehlers-Danlos syndrome (EDS), I get pain in my joints and muscles constantly. My loose ligaments mean I am prone to subluxations, which are partial dislocations, and can leave me in pain for a number of days afterwards.

I also suffer from autonomic issues, which are common with EDS, including gastrointestinal symptoms (similar to irritable bowel syndrome), difficulty regulating my temperature and a thudding heart. I also have severe anxiety disorder, obsessive-compulsive disorder (OCD), and I am on the autism spectrum.

So 9 times out of ten, you will meet me, and I will seem “fine,” apart from perhaps a groan of pain or a sigh that will slip out from behind my “I’m OK” mask. Behind my mask, I am probably feeling nauseous, dizzy and sore. I am probably worrying about something that will more than likely become a full-blown obsessive thought. I am probably in agonizing pain throughout my body. 

I think this is why people are surprised when they see my mask slip. On those days, I have to stop. I have to give in. I have to curl up in bed in tears, hugging a teddy against me.

I have to allow my body to recover from itself. I hate being bedridden, so I will always push myself to absolute breaking point before I allow myself a “sick day.” When I have one, you should know I am in a huge amount of pain, discomfort and generally feeling awful. Today has been one of those days. I am burnt out and spent most of the day sleeping. Tomorrow I will probably be the same. By the following day, you might not even notice there was anything wrong. 

I don’t want pity or people feeling they have to treat me differently, but I do need people to remind me to stop pushing through once in a while. To let myself recover so I can be well longer. But until I hit that point, there will always be a big smile on my face. 

Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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What It Takes to Make a Cup of Tea With My Chronic Illness

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Everyone loves a good “cuppa,” even sick people. Actually, especially sick people.

The thing about my Ehlers-Danlos syndrome (EDS, hypermobility type) is one day I’ll make a cup of tea without even thinking about it, but then the next day it might not be so easy. This is true for so many people suffering with chronic illness and pain. One of my difficult days can be brought on through frivolous activity the day before. You know, like meeting a friend for lunch. Sometimes my sacroiliac joint in my pelvis pops out doing little things like bending over to the bin or dishwasher. I’ve never heard such a “first world issue” as being too sore to get your cafetière out of the dishwasher! Sometimes I fall getting out the shower, but sometimes I really hurt my shoulder just brushing my hair. When I’m really lucky, my hormones just decide to make everything ache like I have the flu on top of any current joint injuries.

But I really want a cup of tea.

This is how it goes on a bad day:

1. First I need to boil the kettle. But picking up the kettle hurts my hands, but it is also like a pile driver into my lower back. So, I fill the kettle up to the minimum level using one of those American style red cups.

2. I need a mug. But I need a mug with a big handle because my fingers are painful and swollen. That’s OK. I have two that fit the bill, but my boyfriend has put them away on the bottom shelf of the ground cupboard. I’ll just slowly lower myself to my hands and knees for a mug. Ouch.

3. Tea bag? Yeah, those are on a high shelf because our kitchen is tiny. They are within reach but it causes a jolt of pain down my shoulder. That happens a lot. The lid on the tin isn’t tight by any means but my fingers feel like they have been run over by a tank, so that hurts too.

4. I pour in the water with the concentration of a mother clipping her wriggling child’s toenails. This bit often goes wrong and I end up with a flood of boiling water due to my wrists giving out or the pain in my back making me flinch.

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5. I let a few minutes pass, I weigh up whether it’s worth sitting down and then struggling to get back up – usually I try and wipe up the surfaces while I stand. If I sit down, there is a very strong possibility that I will forget about it and will later discover a lonely, cold cup of very strong tea on my counter.

6. Milk. When four pints of milk are called for in a week, it seems perfectly logical to buy four individual pints of milk. Why? Because no cup of tea is worth me trying to lift four kilograms of milk out of the fridge.

7. I remove my teabag, carefully. I try not to drop it on the floor because that’s “game over.” If I do that, I sometimes have to leave it there all day and get my partner to move it when he gets home. It really frustrates me.

8. The bin — my arch nemesis. I have to do a sort of side lean into the bin because bending over straight feels like the fire of a thousand suns in my back. I guess I could dump the teabag in the sink, but I judge people pretty harshly for that.

9. Now I get to sit down with my cuppa. Don’t fall – please ankles, behave. Don’t drop it – c’mon hands, don’t be jerks. Don’t slip on the tea-trail you left on the way to the bin. Yes! I got back to the sofa.

Now I want a biscuit…

Follow this journey on Broken Down Body

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To the Public Health Nurse Who Gave Me Courage as a Medical Mama

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Dear Public Health Nurse,

You saved me. You probably aren’t aware of the impact you have had on my family, but I want to tell you that you saved me.

You first started coming to our house two years ago to do weekly weight checks on my son Davy, who had recently gotten his G-tube.

You rejoiced with me over each ounce that Davy gained and mourned with me over each ounce that he lost. You noticed how my daughter Anna was also very tiny for her age and started weighing her, too, taking a load of my mind as I could finally see tangible evidence of her slow, but steady growth.

But, you didn’t just weigh Davy on your portable scale and then leave each week.

You stayed for a while, and you let me talk. You showed me how to deal with the stress of being a medical mama. You let me cry and sometimes, you gave me a hug before you left.  You gave me ways to balance Davy’s care with the needs of my three older kids. You helped me figure out how to handle sweet little toddler Anna when she acted out to get attention and made me pull my hair out in frustration. You researched and printed off articles for whatever parenting issue I was currently dealing with, and you gave me valuable information on feeding a failure-to-thrive child. You encouraged me to lean on my friends and my family when I didn’t have the courage to ask for help.

“You can do this. You are a great mom,” you said to me so many times, and I knew that they weren’t just empty words.

When you hear something enough, you start to believe it.

You told my kids over and over again how amazing they are, and how they were such big helpers to me. I watched the pride fill their eyes as they took your words to heart, especially during those times when I couldn’t find the words myself.

When my depression started to take control over me, you assured me that there was no shame in asking for help. You are the reason that I had the courage to go to my doctor and get my life back.

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And when I finally confided to you how my own health seemed to be going downhill, and I suspected Ehlers-Danlos syndrome was the monster wreaking havoc in my family, you immediately took on the extra responsibility of starting the processes and paperwork to get my family the help we need.

I’ve heard that having a child with medical needs can make or break a marriage. Mine survived and came out stronger, and I credit you partly for that. If I hadn’t had your support, I would’ve crumbled and my relationship with my husband would have followed.

I wouldn’t have survived the last two years intact if it hadn’t been for you. I never expected to forge a friendship with you, but I did and I will forever be thankful for that.

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Why I Can't Get Legally Married Because of My Disability

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Imagine having to choose between your life and marrying your significant other. Many people are unaware that people with disabilities experience the unfair choice of legal marriage versus loss of benefits. Because I have two rare chronic illnesses, Blau syndrome and Ehlers-Danlos syndrome, I not only lose my disability benefits if I choose to marry, but I also lose my health insurance. Both of these illnesses require extensive testing, blood work, appointments, and inpatient infusions on a regular basis. If I were to lose my health insurance, my treatments that not only provide me with quality of life, but literally keep me alive, would be unaffordable.

For most who are unable to work due to disability, financial and medical assistance is immediately terminated upon marriage. Most government-based assistance programs are based on income, so if your spouse is employed, their income counts towards your limit and you become ineligible. Because I was disabled as a child, I am able to stay on my father’s private health insurance — as long as I don’t get married. That is the very insurance that allows me to receive the expensive treatments that have kept me alive up to this point. Because of this, I have no option to marry, nor will I ever if the laws regarding this inequality don’t change. This injustice obviously needs attention and to be rectified, but for today, I must accept it and move forward.

Since I was diagnosed, I knew that marriage was out of the question, not just because it would literally be a life or death choice, but because I believed nobody would ever want to have a relationship with me due to my significant health issues. It’s one thing if your partner develops a major illness after you have connected, but quite another when you know exactly what the rest of your life together looks like. As much as we’d like to assume our partner could handle a major change in health, that isn’t always the case. The partners who can are wonderful people, just like my significant other.

Jennie and her significant other.
Jennie and her significant other.
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When my health situation became bleak and I had exhausted my local options, I moved across the country to live near the major medical center that had been treating me for years. I settled into my new life, 2,000 miles away from my entire support system, including my family and friends. Thankfully, the treatments that I moved for improved my health, and I had the energy and desire to make new friends in Minnesota. A few years later, I met a man for dinner at a restaurant. Little did I know that introduction would drastically change my life forever. While I never intended to have a romantic relationship with someone, as I grew to know him, it was clear he was able to look beyond my disabilities, and just see me. From the very beginning, I was very open and honest, not only about my illness, but about my inability to marry. If that was important to him, I always said, then he was with the wrong person.

Through our discussions, we both agreed the real point of marriage was the commitment, not the legal aspect. We always agreed that if we got to that point, we’d want to have a  non-legal commitment ceremony where we publicly pledged our love to one another. As our relationship grew deeper, we further discussed the logistics of this ceremony, and realized that what we used to look at as a disadvantage and inequality could be viewed in a very different manner.

This summer, when I stand next to my lifelong partner and a few of our close family and friends, we’ll have only one focus. We aren’t having a ceremony because it seems like the next logical step. We aren’t having the ceremony to shop for a beautiful dress, pick the perfect “first dance song,” or select a place setting pattern. We aren’t having a ceremony so I can call him my husband. We are simply stripping down the ceremony to what we feel is the most important part of a “marriage,” the commitment between two people.

We don’t have to have do this, as it changes nothing between us. We won’t pretend we are married when we are not. We won’t have the same name, bank accounts or any legal ties to one another. We will continue to live as a committed couple for the rest of our lives. We simply choose to have our ceremony because our love and commitment is something we want to publicly share. To us, this makes the event that much more meaningful, personal and special.

The Mighty is asking the following: What do you want your past, current or future partner to know about being with someone with your disability, disease or mental illness? Check out our Submit a Story page for more about our submission guidelines.

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