News


Hello, guys! It has been a very, VERY long time since I have written here. There are many reasons in my life why I haven’t been able to share with you for a while, including that my husband and I moved, got a new dog, and started new jobs. For those of you who know me personally, you probably are not surprised I have taken a break from blogging. For those of you who don’t, I’m sorry for the gap there has been in my writing. Please know I have missed being here, missed the chance to share with you, and missed what working with EDS Wisconsin means. Please know that my work here matters so much to me.

We grew by four paws this fall!

So, what brought me back to share four days before my favorite holiday? Pain. I want to write to you, for you, and truthfully almost WITH you because I am in pain. 

Most of us with EDS spent a long time being told nothing was wrong with us. We were given a laundry list of things that would make us “better.” For many of us, there was a phrase that sounded something like “it’s all in your head.” For me, it was 13 years from the first time my mom begged a doctor to explain what was happening to me until the day a doctor actually did. 

This creates a huge problem for us. We take offense then, later, when someone suggests we might need psychiatric treatment. It makes sense, right? You spent most of your life being told you’re crazy, someone finally tells you that you actually have something wrong with your body, and then they suggest you see a SHRINK? Why on earth would you need psychiatric help if your disease is real? Why would you need someone to “fix your head” if the problem is ACTUALLY in your body. 

Well, I have one, huge, giant newsflash for you:

Having an incurable, genetic condition that causes severe chronic pain and usually comes with other conditions with their own symptoms–that causes psychiatric symptoms in itself. You don’t need psychiatric help because you are imagining your pain. You need psychiatric help because you ARE NOT imagining your pain.

I work with a great psychiatrist. I started working with a new one recently because of some trauma I’ve experienced. I knew I needed more help than I was getting where I was going before, so I asked my doctor for a referral to psychiatry. I will never forget explaining EDS to him the first time I met him, though, and the experience I’d had in my childhood with my pain and the doctors and the whole “it’s in your head” thing.

Of course it’s in your head. That’s where we feel pain. That’s how we feel pain. Without your head, you couldn’t have pain at all.”

I have never, in my life, felt such validation. I think those words are burned in to my brain now. I wish I could go back and hug 13-year old Stephanie against my chest and tell her those words in her ear. I wish I could hug her as she begged her mom to find a doctor who would make the pain stop and not one who would just tell her she’s fat. 

There is no cure for EDS. That doesn’t mean you won’t get “better.” It does mean it will always be a part of your life. For some, like me, that means using a wheelchair when I’m only 27. For some, it means not being able to work outside the home. It may mean co-morbid conditions that making eating, drinking, and just existing in the outside world a challenge. For some, all those years of being told it wasn’t real can cause very, very real psychiatric conditions. That does not negate the very real physical part of the condition. It does mean you need help.

I was recently diagnosed with Post-Traumatic Stress Disorder. I’m not going to write about the incident leading to that diagnosis. It’s not relevant to my blog and I’m still learning to cope with it. What I do want to tell you is this:

-My EDS pain is as well-managed as it can be, but for an EDS patient, it is poorly managed. Because of the nature of my pain, I have not responded well to many treatments and we’ve resorted to wheelchairs and other ways to reduce how much I use my body because there simply has been no other successful means of handling my pain.
-When my stress levels are worse, that pain gets EVEN WORSE than it already is. If I rejected the psychiatric help I need, I can’t even imagine what kind of pain I would be in.
-I also find a lot of value in just having someone to talk to who isn’t in my life every single day about the reality of living with EDS. A psychiatrist, psychologist, school counselor, or any mental health professional can let you talk about everything in your life that’s bothering you without it becoming a self-centered nightmare like it would if you spent an hour with a friend in the same way. 
-I highly recommend signing a disclosure agreement that lets your pain doctor work with your psychiatrist. My experience having these two work together has improved my quality of life. I’m not your doctor–but these people would be. Let them help you.

At the end of the day, my point is this: stop being offended at the suggestion of mental health care after an EDS diagnosis. Nobody is saying you are crazy.  I’ve written about the “mental whiplash” of thinking you are imagining it and then finding out you have EDS before; any person who has experienced that PROBABLY needs help from a mental health provider.

I reject the notion that it makes you weak to need mental health assistance. In fact, the day I called the clinic and said, “I really need help and I need it as soon as you can give it to me” took some of the greatest strength I possess. There is so much strength in acknowledging your weakness. 

Every EDS patient is amazingly strong. Don’t you dare let anyone tell you otherwise–but also, don’t let that strength scare you away from asking for help.

I know it has been a LONG time since I’ve written here, but for good reason. I got MARRIED! Despite having a double ear infection AND tonsillitis on top of all the joy that is EDS, marrying the person who has proven to be the greatest possible teammate in this battle against chronic illness was truly the most incredible day of my life. I really needed to take some time to enjoy the wedding and honeymoon and get back in to our lives before I could start to write again, but now, I need to write here because a few things have been happening I think folks who follow EDS Wisconsin can understand.

Despite being happier and more emotionally stable than I have ever been, my body has not been. I had some additional tests run earlier this summer on my legs that did not exactly give me the answers I wanted to hear. Then, I followed up with my doctor and asked what had been on my mind more than anything. I really haven’t been able to get around all that well. Using my crutches and cane hurt my spine. When I don’t use them, it hurts my legs. My doctor said something to me that’s stuck with me. She said, “I think you already know the answer to this, but you just need me to say it to you because I’m a doctor and it won’t be true until you hear it.” I’ve known I need a wheelchair when things are bad for a really long time, and despite writing here and often offering advice to you all, I do not exactly take it all that well.

The next week, I was responsible. I followed up with my psychologist. We talked about how it felt. We talked about what it meant. We talked about dealing with the social ramifications of being a wheelchair user who is not completely immobile. We talked about the tremendous difference it makes in my mind to have the wheelchair instead of the crutches or the cane–especially when I already don’t use them as much as I should. Then, came the insurance company asking me if it was even medically necessary to have one. At that moment, I knew, for the first time, I had to come to terms with my reality. I cannot stay in the workforce if I do not have a wheelchair to help me. I simply do not have the strength or pain capacity to handle what it is doing to me to work on my feet.

I had a wheelchair in my garage. It was an extra chair that isn’t exactly fitted right and certainly not a long-term solution. I kept it there, gathering cobwebs just in case of emergency. I kept it there because I worried I would need it someday. It had been almost a month and because insurance is complicated, I still hadn’t been approved for my own chair–but working had just gotten to the point I couldn’t do it anymore. SO, I didn’t what I never thought I would. I cleared off the cobwebs on the chair. I got a memory foam seat cushion and a bag for the back of it to carry the things I need for a day. Then, I took it to work, where I work with college students every single day. These young people can be unforgiving, judgmental, and challenging.

Here’s what happened: nothing. Nobody said anything at all. It didn’t cause me any problems socially. I was able to get through a day of work with much less pain than I normally do. My staff helped clear things out of the way to make our office more accessible. The college students I see every day didn’t see me any differently than ever before. Neither my staff nor my boss thought I was less valuable than before. I got home at the end of that first day in tears because I was so mad at myself for not doing it sooner.

I can’t say I’ve had this experience everywhere. In truth, older people struggle more with my disability than my generation. I don’t know if they always know how to handle that I look young and healthy when I’m not. They’re often the ones who make comments to me about handicap parking spaces or my decision to use a scooter in a grocery store even though I know people will look at me funny. I wish I had a chance to sit down with every person who did this to me and explain to them the 13 full years of my life I hurt this much and didn’t actually know why. I wish I could tell them about the surgeries I had in high school that were supposed to “fix” my legs but never did. I wish I could tell them that my high school threatened not to let me graduate because I couldn’t take a traditional gym class and wouldn’t let me march with my marching band because I was in a wheelchair from my surgeries–even though I sat first chair in the band and music was my favorite part of my education. I wish I could tell them that even though they might be judging me or assuming I’m not disabled, I am going to continue being as visible as I can for all the kids who are still out there who don’t know what is happening to them–and who might, right now, not be with their marching band, either.

I resent when people say you can do anything you set your mind to–or that if you just believe enough in yourself you can achieve anything. That’s not true. Limits do exist–and that’s OKAY. Accepting my limits is not easy–and society telling me not to is unhealthy. I believe in myself and my ability to be successful, but I also know I need a wheelchair sometimes and that my body has limits able-bodied people my age don’t understand. Life isn’t an inspirational poster all the time. Sometimes, it’s about taking the hard stuff and seeing the good in it. It’s about seeing how the bad things that happened because it took a long time to learn about your EDS–those things are now the ways you’re helping other people. I’ll take that over winning a marathon every day.

I met an AMAZING young lady several months ago–and before you worry, I did ask permission to write this blog before I wrote it–and I’m grateful to have the opportunity to be able to share with all of you about this experience. I think it’s almost as valuable to all of you as it has been for me.

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In the few times we’ve met, I’ve been struck by a few things:

She and I have had many conversations and most of them aren’t even a little bit about EDS.

We’ve talked about Taylor Swift and nail polish and what it’s like to go from middle school to high school.

We’ve talked about watching our puppies grow up.

We’ve laughed about how the oldest sister is clearly the best sister.

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Why am I writing about her today, though? I didn’t realize until today that she isn’t just a kid with EDS who likes me because I like Taylor Swift and hanging out with her. She’s me. She’s me if I had the chance to go back and meet myself when I was 14. She’s me if my mom met a doctor who could have told me what was going on with my body. She’s me if I had a support group to attend and doctors to assist me and parents who knew how to fight for my accommodations at school.

You would never guess if you met me today that when I was 14, I was shy. I was quiet. I wasn’t at all sure who I was going to be. I didn’t know at all where I was going in life.

I remember being in middle school and the pain that went along with it. My body hurt every single day. It hurt a lot more that kids thought I was faking it. It hurt more when they told me in gym class that I was “lucky” I’d sprained another joint. It hurt in high school when they laughed about me needing to leave class early because the elevator was so far away from all the classrooms that I needed extra time to get there. They pushed their way past me in in my wheelchair during a fire drill to such a point I wondered if I would die in the event of an actual fire while all the mean girls escaped with their lip gloss still intact. I had a few really close friends I loved more than anything–and a lot of kids who would never understand no matter how many times I tried to explain.

I never knew an adult with my condition when I was 14. I didn’t even know what my condition was–but I certainly didn’t know how I was ever going to escape from those hallways with my pride still intact. I was afraid to be there. I wish I had known some. I wish I’d met someone. I wish they’d come up to me to talk to me about Taylor Swift and tell me the mean girls read their blog now (because they do).

This young woman is smart, funny, and beautiful–in order of importance. She is in the time of life when I was most struggling. She is in the time of life when I found I most needed words from others.

It’s funny, though, because I’m 27 now. I’m an adult. I’ve known what’s “going on with my body” for more than two years and the first time her mom told me that talking to me was enjoyable for her, I think it helped me more than it helped her. I think it was better for me that I had someone to walk with me at an EDS Awareness Walk who wanted to talk about Taylor Swift and puppies when my fiance couldn’t be there with me.  Nothing I have accomplished in my life matters more to me than making a difference in the lives of young people who have EDS–and what I have found is that they actually make an even bigger difference in my life than I could ever make in theirs.

I hope she remembers for the rest of her days, even when EDS and its related conditions are dictating what she can do in a given day or even what she can physically do in a given lifetime, it doesn’t dictate for a second what she can do with her heart and her mind with every day on this earth. I hope she knows that sharing a smile and a laugh with her made my day and my life better. I hope she knows that she was the person I most wanted to see today–and that I was saving some Taylor videos on my phone just for her. I hope she finds her voice the same way I did but that I will be here to be a sounding board every time she needs one while she’s still growing up.

Someone said today, “middle school is hard enough without all of this.” It was the truest and most painful thing I had heard in a long time. I would never wish EDS on every person who knows me, but I will use all of the words I can write to help them understand. It’s not as effective on 10-18 year olds, but that’s why we have to find our younger selves and love them the way we needed someone to love on us. We need to support them the way we needed someone to support us. We need to let them speak and write and LISTEN to them as much as they need.

Then, when you hear later that the time you spent made a difference in their lives, I promise you, it will help you even more than it helped them. Finding your young self is rewarding. Showing your young self shared interests and friendship is some of the best medicine there is.

Be your own friend. Be it today.

I haven’t written here for a while because truthfully I haven’t been up to it. I’ve always been someone who finds a lot of comfort in working hard and my doctors forced me to take a medical leave because we can’t control my pain. So, I’m on week two of a four week leave from my job. Now, instead of spending my days working and contributing to my office—I’m spending my days on the couch and taking extra naps with my dog. This gives me a lot of time to think and ponder—and I’ll be getting to those ponderings VERY SOON. But first,

Taylor Swift (I know, I have a one track mind, but hear me out) has a lyric that says “Wish you could go back and tell yourself what you know now.” It’s about thinking you’re in love when you’re in high school and the decisions you make around that love.

In my life, though, it’s more about wishing I could go back and scream into my own ears “ASK YOUR DOCTOR ABOUT EDS; TELL HIM THIS IS WHAT YOU HAVE. TELL HIM NOT TO CUT YOU OPEN UNTIL HE FIGURES THIS OUT. MAKE HIM STOP.”

Today, I had a doctor’s appointment, so I had to leave to drive to see my doctor to discuss things. The specifics of what happened aren’t important. What is important, though, is when we got to a part of our discussion when he said, “This is something that should have been done for you at least fifteen years ago. This is a series of tests that should have been done for someone with this sort of condition at least by your early teens. We would have known then. We could have done more.”

It’s been a little over two years since my diagnosis and this is probably the fifth or sixth time a doctor has been this blunt about the nature of a need my body has. Not understanding what was happening in my body for so many years means that we did not get the treatments I could have had. We did not see the doctors I could have seen. My mother did not know. She could not ask the questions. She could not help. I call these situations the “Should’ves, Would’ves, but Didn’ts.”

It goes something like this: We should have (should’ve) done <insert medical concept here> for you. It would have (would’ve) allowed us to <insert medical result here>. Unfortunately, we did not (didn’t) know of your diagnosis at the time, so we must now follow through with <insert updated version of medical concept here>.  Voila! A formula for Should’ves, Would’ves, but Didn’ts!

I don’t know when you get over them, but I do know they continue to affect EDS patients for a long time. I do know they play a critical role in the damage to our bodies for longer than we like to admit.

I’m not a doctor. I can’t give medical advice. I won’t give medical advice.

I will tell you these things, however.

If you are NOT in the EDS community:

  • If you have ever wondered why it is that I speak and write and share so much about my health—it is because all I seek to do every single day is prevent another 27 year old from wondering what her life would be like if those tests had been run when she was 12.
  • Sometimes we need extra support at doctor’s and after them. If we ask for you to join us, please do. Other times, we really prefer to go alone. Please respect that.ves

If you are in the EDS community:

  • It’s okay to need time to process that you DIDN’T have those things done for you before. I am a FIRM BELIEVER in crying in the car after the doctor. I BLAST Swift and cry on the road from Madison to Whitewater so often you’ve probably heard me at some point on I-90.
  • Once you have a diagnosis, you have a responsibility to work for the answers you need. You have to learn to be your own advocate. You can’t expect doctors to just KNOW what you need if you don’t tell them.
  • The best way to prevent future “Should’ves, Would’ves, but Didn’ts” is to get educated. EDS usually is like this fun game that includes a bunch more diagnoses. They don’t always have the time to teach you everything in a single appointment. Educate yourself. Seek out resources. Speak with others in the community. ASK QUESTIONS.

Just like Taylor wished and couldn’t, you also can’t go back and tell yourself what you know now. You can make sure you’re seeking out every single opportunity in your present. Come to our support groups. Read our blogs. Become our friends. Ask us questions. Let us help you. We promise that’s what we want to do. We promise we won’t judge your situation—ever.

You aren’t alone–we promise!

 

 

 

I’ve written in the blog a few times about my love of Taylor Swift, so if you caught the context of my title as a song lyric, props to you. In this case, you also hopefully caught that we’re playing with today’s holiday.

It’s Mother’s Day and that means we are celebrating all things mom. Here at EDS Wisconsin, many of us have shared and sought feedback about what our moms were like, what it means to be a mom to an EDS kid, and what Mother’s Day means to us. I asked my mom, Janell Armstrong, a few questions this morning and if I could write about her in my blog—mostly because I remember vividly what dealing with my health was like as a child and now that I’m 27, I wanted to hear what that was like from her perspective. So, I asked my mom the hardest part of raising a child who was clearly ill with SOMETHING but un-diagnosed.  Then, I asked my mom the hardest part about having a child get diagnosed with an incurable condition at 25—and changing all of those things that happened in my youth.

My diagnosis story is LONG and I’ve written about it a few times in this blog. The first time I dislocated a joint fully, I was only 12 years old. I had no idea what a dislocation was, but I did know that my kneecap was on the back of my leg—and I was thoroughly convinced it would stay there forever. I don’t know if I’ve ever

My Mom and Stepdad, Dave

, to this day, screamed the way I did that day or shed as many tears. It was an incredibly hot summer day and the knee immobilizer was AWFUL for a child, not to mention that even though I always thought crutches looked “fun,” they were actually really awful to use and I had no clue how to use them.  That really didn’t seem like a big deal, though. Kids get hurt. You all know this. If you have a kid who didn’t end up on crutches at least once in their childhood, consider yourself.

 

The problem is, it didn’t stop. It never stopped. The dislocations got more frequent in that knee as I got older.  I would hurt other joints, too and cry until my mom would take me to the emergency room—and I’m realizing now that I’m four paragraphs in that I failed to mention that my mother, superhero that she is, was raising four kids all by herself.  I begged my mother not to make me go to school. I begged her not to make me go to gym class. I would cry for actual hours while she put ice packs on various parts of my body.

My mom did a lot of things for me most parents don’t have to do—and sometimes she took heat for it. I had a predetermined number of days off school I could take off every month because sometimes I just couldn’t handle school. There were times I sprained my wrist so badly I couldn’t write my own homework even though I came up with all the answers myself—and when I asked the teacher if that was okay, she told me, in front of the entire class, that she would have found a way to write the homework herself, so she was going to take a few points off. I have a feeling she and my mom talked about those points because I never lost them. I was a straight-A student and I wanted teachers to like me, so when they didn’t because I couldn’t do something, it hurt even more than my body did.

Then, there were the doctors. The first time a doctor told me I only hurt because I was fat, I was six years old. The same doctor told my sister blue eye shadow was “slutty” when she was 10, so I’m not quite sure where she went to medical school…but anyway now I’m WAY off topic…hopefully you’re laughing.  By the time the dislocations were happening every day, multiple times a day, I was tumbling down stairs—a LOT. My mom told me this morning that what she felt more than anything with doctors when I was a kid was helplessness. She felt helpless to get answers, helpless to fix me, and helpless to make her child better. She wrote, “You SO want to believe that the next doctor will be able to fix it. I had a tendency to believe them because they are supposed to know more than you! And if this, this, and this happens, it will all be over and your child will be all fixed. It’s a little better now with online resources, but honestly, when you were going through all of it, I didn’t really know where to go besides the doctor to get answers.”

I never heard my mom say until today that she thought the same things I did. “This, this, and this and your child will be all fixed” is neither scientific nor eloquent—but it is what moms of an un-diagnosed child desperately want. It’s what those children want even more. I felt guilt over making my mom take me to the doctor over and over again only to be told they didn’t know or I was fine or this surgery would fix it all—and then it never did.

Here’s how I remember it, though, when the doctors didn’t help me enough, my mom didn’t stop. She never, ever stopped. That lesson stuck with me. I didn’t stop either. When I was 23, I saw another doctor who didn’t help me enough, so I didn’t go back. It happened again when I was 24. Then, when I was 25, a doctor FINALLY told me why I was in so much pain, why I was so sick, why I was the way I was—and suddenly every single trip to every single doctor all those hours away was worth it, because we never gave up.

My mom’s response to my diagnosis question hit me harder than I thought it would, because I wish she didn’t have to feel how she did or does. She explained that it killed her a bit when she found out. She wrote that she questioned every decision she ever made regarding my care. She wrote about guilt for not doing a better job and not pushing doctors. She wrote about the worse guilt about those moments when she doubted her own child’s pain.

So, this is for my own mom—and for any other mom who couldn’t get their child diagnosed until adulthood. These words are my words for you, my thoughts for you, my love letter to the “mama” who made me strong enough to live through EDS:

  • You are not a doctor. You are taught to trust doctors with your lives. A doctor brought me into this world and you trusted them to help you care for me every step of my life. You pushed. You kept pushing—and you gave me the tools to keep pushing once I left the nest. I am my own greatest advocate because I learned from watching you.
  • I doubted my own pain more than you ever could or ever will. I thought for sure it was all in my head. There was no way doctors could possibly go thirteen years and find nothing if I was actually ill, right? You don’t have to carry guilt for wondering about something I couldn’t help but wonder myself.
  • You didn’t make me sick. You made me strong. You gave me all of the wonderful and beautiful things about myself and without EDS, I probably wouldn’t have been able to make these traits what they are today. I will work harder to remind you of that for the rest of my days with you.
  • Watching your child in pain and not being able to help is probably worse than being in pain yourself. You’ve told me so many times that you wish you could just take my pain. I know you mean that. I know you would ACTUALLY do that for me. I know that you would give up walking yourself if it meant I could keep walking. That’s how much you love me. That’s how much you have always loved me. (And some days, I’m selfish enough to let you.)

My mom’s point about not having resources to help her is exactly the reason I do what I do. She is the reason I speak publicly when I can. She is the reason I write this blog and share my story on social media, because I promise you there is a mother out there somewhere with a daughter crying from her pain and the mother does not know what to do—and if I can help one more mother not have to question the decisions she made because she read OUR story (mine AND my mom’s), I will keep doing it for as long as I can.

To all of the mothers raising children with chronic illnesses or who have chronic illnesses themselves, you are strong and brave and wonderful and even though you deserve recognition every day, you especially deserve it today. Happy Mother’s Day.

 Love you, Mom.

Last night, I had the pleasure of attending a beautiful event honoring one of my favorite institutions. I want to preface what I write here with a disclaimer that our keynote speaker was incredible, inspiring, and has a story to tell that I think is as important to tell as any of ours. I think the opportunity and the honor of sharing our stories are both critical components in improving our empathy with others and also in improving our own lives–and that is why I go out of my way to write and speak about my own experiences in the mediums I do.

BUT, I walked away from last night and couldn’t stop talking about the speech with my fiance. I couldn’t stop thinking about what it would mean in the minds of people who lack the firsthand experience of losing the ability to do something, of being chronically ill, or having medical professionals tell you when something is no longer safe for you.

You see, our speaker is an amputee who lost his leg. His speech centered on having been told by his doctors a laundry list of things he could (or should) no longer do. And then, he climbed Mount Everest. Amazing, right? I mean, honestly, it’s insane. I have absolutely no concept of what it would be like to climb a mountain considering there are days I can barely convince my legs or my spine that we should work together to climb INTO my car or up a few stairs, nonetheless the highest point on Earth.

He said at one point that if you had it in your heart and your mind to do something, that’s all it would take–then you could do it. I looked around the room at that moment. I saw the glean of the beautiful lights in everyone’s eyes. I know most of the people who were in that room and I know they are primarily able-bodied individuals. I could not get out of my mind for even a second this idea that if I WANTED something badly enough, that was all it would take for me to able to do things again that my medical professionals tell me I cannot (or should not) do any longer. I don’t think this speech was meant to imply this. I guarantee if I sat down over coffee with him, we both have the frame of mind and experiences to know the difference.

So, where’s the problem? The problem is in those shiny eyes. The problem lies in the people who have no concept of what it means to be limited by your body–and that there is a big difference between setting your goals based on what your body CAN do and giving up on even having goals because your body doesn’t work the same as others–or like you want it to.

Earlier this week, we had a snow storm. It’s April, so that in itself is ridiculous, but the bigger issue came about when the snow around our apartment hadn’t been removed. This week, I’ve been using my cane and my crutches to get around because I’ve been dislocating my knees and ankles with such frequency it’s necessary for my own safety. So, when it came to be 4pm and the snow from the preceding day still hadn’t been removed, I made contact with the people in charge of our snow removal. I attempted to explain that I wouldn’t be able to safely access my apartment with the snow there. I said “I have a disability and I need to be able to get outside.”

And then, I was told, “There are other disabled people who live here and they’re more understanding than you–and some of them are even in wheelchairs.” I was filled with outrage and disgust for a multitude of reasons:

  1. The experiences of other disabled people do not define what my experiences are. Just because you haven’t heard from others with disabilities does not discount my need.
  2. A wheelchair is not the single indicator of a disability. That wheelchair does not by default make that person the sole indicator of disability access.
  3. People with disabilities are no more meant to be treated as a SINGLE person than any other group–racial, gender, sexual identity or otherwise.

So, when I heard this speech and I saw the reactions, I became more concerned about the experiences I’ve had and continue to have. I cried when we got home thinking that I already have to explain why I’m parked in a handicap parking space and now, when I’m limping into the grocery store with no visible mobility aid from the parking spot they’ve already decided I don’t need, I have the additional pressure of “Well, he doesn’t have a leg and he climbed a MOUNTAIN, so why on earth can’t you get groceries without the handicap space?”

As much as the message that believing in your mind and wanting in your heart enough will make you achieve what you want to achieve is positive and inspirational, it simply isn’t reality for many people with disabilities–and it’s dangerous when an able-bodied person applies that standard. I have wanted to RUN a half marathon for years, but when I got my diagnosis and started working with my therapist and doctors, I knew that goal had to go away. It had to be set aside. It is dangerous and reckless and would potentially harm me for the rest of my days. I CAN set a goal of walking a mile for EDS Awareness next month–and that will feel to the new me just as impressive an accomplishment. Accepting your reality doesn’t make you weak. Sometimes, it makes you smart. Sometimes, it means the difference between having a moderately functional body until you are 55 and wearing your body out before you hit 30.

I can’t take the list of things my doctors tell me not to do and throw it out the window to climb a mountain. It shouldn’t take doing that for others to decide I’ve made the most of my disability situation. I think what he’s done is amazing and should be applauded. I think his accomplishments are more than deserving of recognition. I think he deserves every standing ovation and round of applause he’s received and will receive for the rest of his life.

BUT, if you are chronically ill or disabled and you do what your doctors recommend, you are allowed to celebrate the accomplishments that don’t earn those medals. You are entitled to recognize that for some people with genetic conditions, wishing and wanting and hoping and believing can’t possibly change DNA–and that might mean that maintaining gainful employment and a happy family life FEELS like your Everest. You can find Mount Everest all over the place and you can decide that other goals mean the same thing to you–and you don’t owe it to the able-bodied world to climb anything. You experience in your daily life what most can’t comprehend–and that alone makes you worthy of telling your story–tell it, with or without a mountain.

“I want you to write about this.” He supports me every step of the way…but he’s never going to let me climb a mountain.

Wisconsin Integrative Pain Specialists Logo

As many of you know, EDS Wisconsin will be hosting a one-mile walk for EDS Awareness and Suicide Prevention on May 5, 2018. This walk is a milestone for the organization as it represents all of the work we have done to strengthen connections throughout the State of Wisconsin and bring about real changes for EDS patients.

We are beyond excited to announce that we have received a Hope Level Sponsor, donating $1000.00 to our event, Dr. Linda Bluestein and her clinic, Wisconsin Integrative Pain Specialists.

Dr. Linda Bluestein

Dr. Linda Bluestein’s decision to be a “Hope” Sponsor for our EDS Awareness and Suicide Prevention Walk is perhaps among the most fitting of sponsorship levels. Aside from her financial support of this specific event, Dr. Bluestein has been an avid and critical supporter of EDS Wisconsin. Her support began even before the organization was officially created and is rooted deeply in her passion for providing for those who have Ehlers-Danlos Syndrome and its related conditions. Perhaps even greater than the specific medical care Dr. Bluestein has provided for her patients, the work she does with and for them provides hope for our community—hope we will be understood, hope we can live with managed pain, and hope EDS patients can receive the care and empathy they truly need from medical providers. We are grateful for Dr. Bluestein’s financial support and just as grateful for the moral support she has provided for so many of our members and for the organization itself. She is a “Hope” level sponsor and a hope-giving medical provider, without whom EDS Wisconsin likely would not be where it is today. Thank you, Dr. Linda Bluestein, for this sponsorship and for everything you have done for us.

Dr. Bluestein’s clinic is an incredible resource for patients and we couldn’t be more thrilled to have her and the clinic as part of this special day. Please visit her website by clicking the image above or RIGHT HERE!

When you get diagnosed with strep throat, you don’t go home to the internet and hope and pray you can find someone else who has been through what you’ve been through. You don’t worry about explaining to your family why you’re different than others. You don’t hope your work understands why you might need some time off. Everyone knows what strep throat is. When someone tells you their doctor said they have it, you know they’re heading home with an antibiotic for their full 24-hour period away from others to keep from spreading germs. You let them know you can handle things at the office while they’re at home getting some extra rest, eating lots of popsicles, and waiting for the magic medicine to get rid of the tickle and the white spots in the back of your throat.

When you get diagnosed with Ehlers-Danlos Syndrome, though, people don’t nod and understand immediately. They wait for you to explain it to them, which can be frustrating when you aren’t even quite sure yourself what exactly the condition is or means for your future. Without fail, someone will ask you in those first few months, “is it fatal? Are you going to make it?” When you explain to them that the condition itself isn’t fatal and the few symptoms that can be usually can be prevented with proper diagnosis, they breathe a sigh of relief. They look at you and tell you something like, “Thank God it’s not cancer.”

I’m going to tell you something in this blog post I’ve told maybe five people on earth. There were moments in those first few months when I resented cancer patients. I resented them for having a disease people understood. I resented them for having a condition strangers would give money to research. I resented them for either going into remission or not making it when I knew I’d be struggling the rest of my life–a sort of chronic illness limbo where you never get better, but “hey, at least it’s not cancer.”

Let me also tell you something, THIS IS INSANE. Okay, but it’s also human. It’s human to wish other people could understand and have sympathy. It’s human to want people to feel an ounce of what you feel. It’s even human to become angry at other people for getting attention for their condition when you were almost screaming at your doctors for half your life before they finally believed something was wrong with you. You have to move past that. You have to be able to see the insanity and forgive yourself for those feelings. Tammy said at our event this weekend that self-forgiveness was an important step in being able to forgive others and she couldn’t be more right. If you can forgive yourself for resenting a cancer patient, you can forgive someone else for not understanding a condition whose name they heard the first time from your mouth only minutes before.

Here’s the other truth, though, you won’t really learn to live with this fully until you make room in your life for people living with it, too. Nobody else REALLY can get it and it isn’t fair for you to expect them to. I think of it this way, I work in an office. I work on a computer most of the day and with customers the other part of the day. If a carpenter asked me to empathize with him about his job, I couldn’t do it. I have no idea what it’s like to build a house. I can’t even begin to comprehend the nature of that profession–and it would be insane for him to think I could. I can talk to him. I can ask questions and do what I can to help him, but if he REALLY needs someone to help him through the hardest days in his job, he needs someone who has done it. He needs someone who DOES it. Having EDS isn’t all that different and it isn’t even that much more complicated.

Confession time: I SUCK at this. I get really angry a lot of the time at people for not understanding what’s happening to me. I can’t even tell you how often I’ve made snarky comments back at someone who has said something to me about using a handicap parking space when I’m “young and pretty and ‘fill in the blank with other not sick word’.” Now, I’m not saying people should do this to me, because they shouldn’t. I have a handicap placard from the state and parking in that space is my right. I need the space even more when I’m NOT using my cane or crutches because my body is working ten times harder without help–and I don’t need some judgmental person who doesn’t even know what EDS stands for telling me I’m not disabled enough to park there, BUT, I have an opportunity to prevent them from saying it to the next person. I have a chance to help another “young, pretty, whatever” disabled person not have to explain that she has a condition they haven’t heard of and walking hurts too much to park anywhere else. A few people mentioned this to me, so today, I worked on a small business card I can give people when this happens. I know I’m still going to be angry. I should be angry. It’s not right and it’s not fair. BUT, if I can be pleasant and simply hand them a card and tell them to have a nice day with a concise message on it explaining what EDS is and that not every disability looks like the symbol on the parking sign, I’ll probably leave that situation better than they do?

Now, when someone who didn’t understand said this to me, I got even angrier. This weekend, though, I was able to attend my first in-person support group with so many of the people I’ve met through this group. I know they’ve been there. I know they’ve seen doctors who didn’t see the condition. I know they’ve had people in their lives not understand. When one of them offered the suggestion, it seemed valid and reasonable because I knew they GOT it.

My EDS friends don’t replace my actual doctors. They can’t fix all my symptoms. They can take my call when I’m home from work and devastated because my body literally hurts so much I can’t sit at my own desk. They can tell me which doctor and where was the most help for them on a specific issue. They can laugh with me when I want to sit on the floor instead of a chair because my body likes it better–and when I say I want to sit there, they don’t ask ten more times. They can become my allies in a battle for answers and doctors and cures and empathy. They can become my refuge from the judgment of those who can never understand what it is to be in our situation–and help me not to judge them in return.

They will do that for you, too. I promise. If there is any ONE thing I have learned about EDS patients since my diagnosis, it is that their passion for helping others far exceeds any physical deficit they may have. Find them. Ask them. Make them your people. I promise you you’re not ACTUALLY alone no matter how much it feels that way.

Plus, some people who don’t have EDS will still love and support you no matter what–like my amazing office staff in their EDS shirts.

Tomorrow is my “Diagnosis Day.” This is the day I was diagnosed with Ehlers-Danlos Syndrome, the day my world changed forever, the day I finally put a name to how my body worked. The numbers in this date are etched into my brain the same way your spouse’s birthday might be. 3.14. 3/14. 3-14. No matter your format preference, March 14th remains the date and “mixed” remains the emotion.

I spent 20 minutes crying at my kitchen table tonight hoping my fiance wouldn’t hear me over the sound of my latest Netflix documentary. I cried remembering a 25-year old girl whose outlook on the next day was very different from its eventual outcome. You see, we’d finally found the doctor who could “fix” my legs. We finally found a doctor who could make me better. I’d sent over years of records to the new facility hoping by the time I’d arrived there, they’d have a plan to make me stop falling down, stop needing crutches, stop getting hurt walking around my own office.

Then, 25-year old Hopeful Stephanie arrived and put on a pair of way-too-big UW Badgers shorts and waited on a plastic exam table, patiently enduring a resident prodding, poking, and twisting the already painful legs and knees. And then the words,

“I think I know what’s wrong with you.”

She overheard him in the hallway telling his attending physician his find. She handled them coming back in together. She processed the official diagnosis just sort of staring at them, laughing when she said “Don’t tell me I have EDS” and surprising them with her knowledge of the condition, because a close friend had already backseat-diagnosed her quite some time before. They told her they couldn’t do more for her legs than had already been done surgically. They told her she needed to be referred to pain management and scribbled down the name of a doctor who knows EDS well, told her she could put her clothes back on, and wished her the best of luck.

In those immediate days, Hopeful Stephanie didn’t even think THAT much about reality. She was too busy researching and saying “OH MY GOD THAT MAKES SENSE” over and over again to herself as she read article after article. Hopeful Stephanie thought her new doctor would have all the answers.

I refer to myself in the third person above because that’s not really me anymore. I don’t mean that I’ve lost hope or that I’m somehow dark and depressed, because I’m not, but I am incurable–and incurable makes you a different person. Once you’ve processed that you are never going to be completely better, you aren’t who you were before. You change how you see things, you measure things against your condition.

My life is on a timeline, BEDS (Before EDS) and WEDS (With EDS), with March 14, 2016 exactly at the center and none of it makes sense because I’ve had this condition since the day I came into the world.

I want to tell you that even though I haven’t gotten “better” and there are truthfully things about my health that are much, much worse now than they were the day Hopeful Stephanie became me–my life is still better in the WEDS phase.

Here’s why:

  • I understand my body and its limitations. Most people will tell you I’m really bad at actually observing them, but I do understand them.
  • Doctors have a diagnosis in writing on my medical file. They know it isn’t in my head. I don’t feel crazy seeing doctor after doctor and being told I’m fine. I don’t have to worry with every injury that my parent or spouse will be accused of abusing me–which was a very real side effect of growing up as an undiagnosed EDS kid.
  • I can make informed decisions about having biological children. EDS is genetic and it does have a 50% carry rate. It’s nobody’s business how this affects my reproductive decisions, but knowing means I have the information I need–and so does my partner.
  • I have access to more treatments. Without a diagnosis, I was not getting the treatments I needed. Now I get a chance to try lots of things to see how we can manage my life with EDS.
  • I get to advocate and be one of so many loud voices for the EDS community and use my passion for advocacy combined with my chronic illness to do all I can to help make a difference in the world.

I spent more than 13 years of my life not understanding my body. A lot of EDS patients wait A LOT longer than I did. My therapist told me recently that perhaps I’m so passionate about advocating for others because I don’t feel like I got what I needed in those 13 years–and she couldn’t be more right.

I’m still going to cry tomorrow. Acceptance, as I’ve said before, is not a permanent state of being “okay” with your situation, but instead is learning to make room for the discomfort when you aren’t okay with it. I may not be “okay” tomorrow but without EDS, I’m not me–and whether Hopeful Stephanie likes it or not, I think I’m pretty okay.

Plus, the guy I came home to cry to on Diagnosis Day asked me to marry him since then–and what could be better than being his wife?

‘Twas the night before doctors and all through my house…my emotions are stirring, faster than a sought-after mouse.

Okay, so I’m not really going to write this entire blog post that way. It’s not my style and isn’t the message I’m going for, but I’ve taken a break from writing, mostly for personal reasons, and now I want to get back to sharing with you about the world of EDS.

Tomorrow, I go back to my pain management doctor for what seems like the ten millionth time. I’ll be honest when I tell you that pain management seems like the place they send you when they stop actually looking for a way to fix you and start looking for ways to help you mask your symptoms. My pain management doctor is honestly incredible. I don’t think I could say a negative thing about him other than that, like the rest of the medical world, he still hasn’t cured EDS. Despite that, however, I still don’t want to see him tomorrow.

Here’s why:

I haven’t improved since my last appointment.

There. I said it. Now you know. Now I’ve put into words and acknowledged in English the truth I haven’t even wanted to tell myself.

When they ask me tomorrow to reduce my pain to a numeral, I won’t want to, because I don’t measure it that way.

My pain is measured more like, “I hurt so much I couldn’t walk my dog to the mailbox today” or “I hurt so much the only thing I could tonight was take another painkiller and lay in a hot bath tub until my tears wore off all my eye makeup.” My pain is measured in CAN and CANNOT. It is measured in DO and DO NOT. It is measured in braces and canes and crutches. It is measured in tears and pills and puppy cuddles and coloring book pages and hours spent watching Netflix instead of walking my dog or dancing to Taylor Swift in my comfy weekend clothes.

Tomorrow I will have to rate my pain and how much it has changed since my last appointment. Tomorrow I will have to tell my doctor I want to try something else because I can’t do this anymore. Tomorrow I will have to say my pain is averaging a 9 and the CANNOTs and DO NOTs are outweighing their counterparts. Tomorrow I will cry off my eye makeup before 9am, because my doctor will come in at 8.

And then, we’ll come up with a new plan. My doctor will tell me again how strong I really am. My supportive mother-in-law will take notes and ask what else they can do to help me. But, I will keep fighting and not every night will be this scary. I will be thankful for the doctors who fight this hard, the family members who support us, and the people reading these words right now.

And finally, I’ll leave the doctor’s office and get back to my life–like every other appointment before and every other one to come, because that’s what we do. We keep fighting. We keep living. We do this, because otherwise, EDS wins.

Choosing to smile!

Together we are stronger!