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Chronic pain Archives | Strengthening EDS Connections!

News

Trigger Warning: Child Abuse, Sexual Abuse, Medical Trauma

Hello, everyone! I know it has been a very long time since I wrote to you here. One of these days, I will be able to tell you the entire story of why I haven’t been able to be as open to the world as I used to be. For now, I will tell you the vulnerability I have always cherished in writing was used to try to fight a battle I didn’t think could possibly hurt me more than EDS does. I didn’t expect what happened after, the publicity, the sudden move away from my home, and ultimately, some really severe PTSD I’m still not quite sure how to handle. For most of my life, I wanted people to know my name and to fight for what I believed in–until my name and fighting for what I believe in almost destroyed my life. I’m doing a lot better now than I had been. I have had a lot of help and support from a lot of people, many of them in this community–and I so appreciate the patience people have had with me as I have tried to navigate venturing back out into the public. My passion has never wavered, but my abilities and my needs have.

May is EDS Awareness Month, as most of you know. I posted a photo in my Snapchat story last night with the caption “Thanks, EDS” and giggled a little with my husband about it. Tammy (our wonderful leader) saw it this morning and mentioned I should share it with you for awareness this month. She was right. The picture is funny if you KNOW you have EDS. Your legs probably look like mine or at least they have looked like mine and they will again. It’s not so funny if you don’t know you have EDS and has the opportunity to educate a lot of people. So, here’s the photo:

Just a Regular EDS Night

I remember growing up and getting hurt many times. It seemed like I was spraining joints more often than I was taking spelling tests. The nearest ER was a frequent stop, so much so I think we had a running joke about a punch card for a free visit after ten stops. Back then, though, I was just a kid, covered in bruises, hurt again. I wasn’t diagnosed with EDS until March of 2016, when I was 25 years old. I always knew what was coming when we went for these visits. I would wait for the worst part. They would ask my mom to leave the room and then ask me questions to make sure I wasn’t being abused at home. Make no mistake about this: recognizing the signs of child abuse is an absolutely critical part of medical care. It was challenging for me because I am the victim of child molestation and I waited 11 years to come forward about it. When they wanted my mom to leave the room to ask me about whether or not she was safe, I was afraid they might figure out the other “thing” or take me away from the person who did keep me safe, the one who kept taking me to doctors no matter how far away the drive, no matter how many of them told her I was fine. I knew she was getting asked questions in the hallway. I knew they were looking for differences in our stories, keeping track of how many times I’d fallen off my bike. I remember even at 13 years old being confused about why she would bring me in covered in these bruises and asking for help if she were trying to hide something.

I wish my mom had known then what we know now and could have advocated for me. When my husband and I go to the ER now, which we still avoid but now only for a lack of knowledge about the more rare of my conditions, Hypophosphatasia, we are able to have them access my electronic medical records to see that I am a patient with Ehlers-Danlos Syndrome. My pain specialist makes himself available for calls about the condition in case they do have questions about the easy bruising. You see, I don’t know where one single one of these bruises came from. My husband is a VERY patient man who would never in a million years lay his hands on me, but I also could literally bump into him when walking across the living room and end up with one of them. I have bruised myself with one of the worst bruises I have ever seen from my own wheelchair, a device meant to limit injury to my person.

Why am I writing this now? I want people who might have legs that look like this to know what to ask their doctors. I want them to know the questions to ask that my mom didn’t know to ask and NOT for lack of trying. We had no idea what EDS was. More than that, though, I want doctors to know what else might cause someone to look like this. I want them to know it is so important to know the signs of abuse, but also to know how to test for conditions that might make me look like this from absolutely nothing abuse-related. I want them to understand this could be caused by the patient’s DNA and a bump into a kitchen counter. None of these bruises hurt when they happened or I would know where they came from.

Maybe the patient who is constantly in the ER with seemingly silly explanations for their injuries, like falling up the stairs (I can’t remember how many times I did that) and also with bruises on them like this also has stretchy skin, hypermobile joints, migraine headaches, and chronic pain. Maybe, that ER doctor could answer their questions or refer them to someone who can before they’re 25 years old and convinced they’re crazy. Maybe that child won’t be afraid about when their mom gets called into the hallway because their mom will already know to tell the physician that since the last visit, they saw another doctor and now they know the child has Ehlers-Danlos Syndrome, which is what is causing the easy bruising and susceptibility to injury–and the medical records will support that and eliminate the trauma of that fear.

The bruises aren’t fun,  but the bruises on our mental health from not knowing for so long are much worse. You can’t see collagen, but there are visible signs of the defective version.

Thank you again for your patience, support, and love. I am blessed to be in a community of people who support each other no matter what. I look forward to writing to you more again.

-Stephanie

PS: To brighten the mood after such a tough topic, here are cute photos of my dogs:

Essex “Boo Boo” Vander Paws

Aura Charlotte Vander Paws

Karina, a woman with short, brown hair and a pink flower in her hair smiles slightly. She is wearing big, black glasses and a red jacket

When I became acutely ill in 2010 with symptoms related to cervical spine instability, I fell into a big hole and didn’t quite know who I was anymore. I had to give up my job in research and couldn’t do most of the things I loved. For a long time, I struggled to find a new sense in life, something that gives me hope and purpose. 

And then ’We Are Visible’ happened! When I started to study in a journalism degree in Edinburgh, Scotland, I immediately knew that I wanted to produce a documentary film for my MA thesis. Even though I had never filmed before and didn’t know much about filmmaking, I felt that it would work out if I just put all my heart in it. And I certainly did! 

With my film ’We Are Visible,’ I wanted to give a voice to an often neglected minority: People with invisible disabilities, specifically people living with Ehlers-Danlos syndrome. I am part of this community as well, and therefore  see it as my responsibility as a filmmaker and journalist to change misconceptions surrounding invisibly disabled people. 

”How can you be sick if you look totally fine?” is one of many hurtful comments people in my community have to hear on a daily basis because you can’t see their disability from the outside. Journalists and filmmakers alike talk about these people but not with them. I wanted to change this, so ’We Are Visible’ directly involved all of its contributors in order to represent this community in an accurate and truthful way. 

’We Are Visible’ shows people living with the invisible condition Ehlers-Danlos syndrome all around the globe and therefore conveys its diversity by following families in England, Malta, Germany, America, Holland, and Belgium throughout their daily lives.

’We Are Visible’ wants for the non-disabled audience of this film to understand more about the invisible condition, and for disabled viewers to be able to relate to people with a similar disability because there is so much more that unites than what separates us! But most importantly, it emphasizes not only the challenges we face every day but also the incredible strength every person with EDS has in order to cope with all those obstacles.

 

Pencil like drawings of all the faces of the main contributors of We Are Visible.

We Are Visible – Open Your Eyes

 

Details about the Film

SYNOPSIS:

“But you don’t look sick!”

‘We Are Visible’ gives a voice to a neglected community: People living with invisible disabilities, specifically in the context of the rare condition Ehlers-Danlos syndrome (EDS). It showcases the challenges this community faces due to misconceptions surrounding invisibly disabled people and conveys the strength and resilience with which this community fights to become seen. Our condition might be invisible, but we are not!

We Are Visible

SCREENINGS of the film:

In January, there will be screenings in Rhode Island, Colorado, and a larger one in Orange, California. If you want to join any of those screenings, have a look at the Event page: https://we-are-visible-film.com/events/

Duration: 

69 minutes

Director, Producer, Editor

Karina grew up in Germany but currently lives in San Francisco, CA. After finishing school, she has worked in the medical field for eight years. As a laboratory technician, she worked in a German research facility with a focus on biotechnology. In 2010, she developed symptoms related to Ehlers-Danlos syndrome and comorbid conditions and was unable to continue her research. She soon found her passion for writing and started to combine her medical knowledge with her personal experiences with disability and chronic illness and produced articles about medicine, science, and disability. 2018, Karina was accepted into a journalism program in Edinburgh, Scotland, and has been studying ever since. As part of her degree, she has worked with blind journalist Belo Cipriani and produced three accessible short films called ”Firsts” that feature writers with different disabilities. Additionally, she writes for an Austrian magazine for medical professionals with a focus on the patient’s perspective, and she has also written for international publications such as the Columbia Journalism Review. Besides journalism, Karina has a strong passion for all activities that involve being on or in the ocean. She loves traveling, dogs, facts, and Heavy Metal music, and hates lies, intolerance, and cooking.

More about the filmmaker: www.karina-sturm.com 

Trailers

Trailer 1

https://vimeo.com/349770539

Trailer 2

https://vimeo.com/349770866

Tailer 3

https://vimeo.com/348046371

 

Find out more:

IMDb

https://www.imdb.com/title/tt11100592

Official Website:

https://we-are-visible-film.com

Facebook:

https://www.facebook.com/karinasturm86/

 

Flyer for 'We Are Visible' featuring black and white pictures of the main contributors, all women and two children, as well as film award laurels, and the synopsis of the film.

We Are Visible – A film about people living with Ehlers-Danlos syndrome

A great friend I met through EDS Wisconsin asked me today if I’ve ever written about how it feels to never really “be able” to have an emergency. If you’re reading this and you don’t have EDS, you probably are wondering what we mean. For example, if we had a gaping head wound and were taken by ambulance to the local emergency room, of course we would be having an emergency—so how exactly can we say we are not “able” to have an emergency?

Here’s the thing about life with a condition like EDS. A normal day for us can often include symptoms severe enough, if we were healthy, someone from our family would probably put us in the backseat of a car surrounded by pillows and take us to the hospital for immediate attention. Just yesterday, as I was playing with my two dogs, who you both know I love as much as just about anything in the world, I dislocated a shoulder. I heard it before I felt it, because I have grown so accustomed to this particular joint moving. I went to my bathroom and moved my body around enough to put it as close to the right location as I could. I had already taken the dose of painkillers I was allowed to take for the afternoon with my NSAIDS, so aside from the bag of frozen mixed vegetables I grabbed from the freezer for some icing, there really was not anything else I was able to do.

They’re skeptical of photos before cake, but they’re still worth a rough game of fetch.

Here is what would have happened had I gone to the emergency room. First, I would have had to explain to every person who came into the room that I have EDS, usually spelling it out for them. Last time I was in the emergency room, the DOCTOR (yes, a physician, an MD), said to me, “You have Maylers-Danyos Syndrome? That’s a new one. I’ve never heard of that.” I was in tremendous pain from what turned out to be a severe kidney infection (which took two more trips to the ER to get diagnosed, but I digress), so I thought perhaps in a state of pain, I hadn’t annunciated well. I annunciated and spelled out, “E-H-L-E-R-S…” and so on. He still had no idea what I was talking about. Next, they would have taken an x-ray of my shoulder. By this point, I would have relocated it well enough for it not to show on the x-ray. Because they’ve never heard of EDS, they would tell me it is unlikely I even dislocated it in the first place. They would offer me a higher dose of ibuprofen (yes, no actual painkillers) and advise me I may have pulled some muscles in the area. Usually at this point they say something like, “If you have this rare condition, you are probably seeing a specialist, so if you have a problem, follow up with them.” It has usually been hours by now, because I was triaged long after the screaming baby and the people with conditions they have heard of. My husband has drained his phone battery from playing games and trying to entertain me through the pain. Then, we’ll get another bill from another trip to another doctor who didn’t help me.

The last time I was in the ER multiple times, it took a routine visit to my pain management specialist for him to realize how truly sick I was. By this point, my fever was maintaining at 103-104 for more than  three weeks, but I had been given oral antibiotics with no culture for a kidney infection on my second trip after being told on my first visit that my extreme abdominal pain was caused by an ovarian cyst (that had not burst) smaller than the width of a dime. I was no longer in my hometown and in a system more equipped to handle my condition, but I only felt safe, because he called the ER. He walked them through both of the conditions I have. Aside from EDS, I have a rare metabolic bone disorder called Hypophosphatasia that leaves me incredibly susceptible to infection due to poor creation of white blood cells. Without an appropriate culture of my infection, it was extremely unlikely the antibiotics would be effective. I typically get 10-15 bacterial infections each year requiring antibiotics. My doctor told me if I did not agree to go to the ER, he would call the ambulance to take me because I was tachycardic from this infection and fever. I required significant amounts of fluids from dehydration and IV antibiotics, in addition to beginning a course of oral antibiotics to follow up on the infection. Without those specific instructions from a physician, it is likely I would have had the same experience. I am blessed to be articulate and skilled at advocating for myself and yet, I still do not have the same experiences in emergency rooms and urgent care as those without my conditions, because doctors simply are unprepared to handle someone as complex as me.

This post is for every EDS patient who has ever had a severe injury and decided a trip to the ER would be a waste of time and money for no reason but the lack of understanding. This post is a reminder why so many of us are fighting to educate physicians about EDS. This is for the parents sitting next to their children in those emergency rooms who do not yet have a diagnosis who end up separated from their babies, so someone can ask if they feel safe at home. It is better now than it was when I was a child and I believe the work we are doing today will mean it will be even better when your children are adults. This doesn’t make it fair or easy, but it does make the effort worth it.

You are not alone. We are all in this together.

It’s funny whenever I find myself taking a break from writing, it’s usually because I’m doing the same thing to blog readers as I do to those in my own life–pretending everything is going so well I don’t have anything to say. If any of you know me in real life, the idea of me having nothing to say is, in itself, hilarious. Yet, here I sit, at my desk, in my wheelchair, a dog on my lap, a TENS machine at its highest power attached to my back and I’m still not really sure how to write this blog post.

Essex likes to be cozy

In the world of chronic illness and chronic pain, we all learn to tell healthy and able-bodied people we’re doing “fine” pretty much all the time. We do this for a variety of reasons, including, but not limited to:

  • Our medical conditions are complicated and explaining what is going on would take longer than anyone wants to spend on hearing how we’re doing
  • People generally don’t want to hear when things are getting worse
  • Pity isn’t something we thrive on and we know at some point, it runs out
  • Many people just simply aren’t sure how to react to hearing how we’re doing

I’ve been telling even myself I’m “fine” for the better part of the last several months, even as I fought off a severe infection that required multiple emergency room visits in which physicians did not understand my condition and in which I was time and time again not given the necessary antibiotics to fight the infection. I woke up one morning with a fever of 104 degrees, feeling like I was naked on an iceberg, and shaking so hard I couldn’t even type out a message on my phone. That day was our second trip to the emergency room. Even then, I didn’t get IV antibiotics.

I didn’t get them until the doctor who generally treats the pain caused by my EDS saw me for a regular appointment and realized how incredibly sick I still was even after 9 days on antibiotics. I was tachycardic. I had a fever. My kidneys were so infected the pain in my back was far more severe than even on a normal day. As he looked me over, he called the emergency room down the street and instructed them on my condition, telling them exactly how serious this was.

He also looked at all the blood work from all my previous ER trips…and then from all my trips to all the doctors over the last six years, which is when he noticed a commonality. I had alarmingly low levels of a necessary enzyme in my blood consistently for six years. These levels had been flagged in my blood work every time it had been drawn for all these years and are indicative of a condition found in 1 in 100,000-300,000 people. It is a metabolic bone disorder that cause almost all of the things he and I had been trying to figure out for years. You see, I have incredibly curved long bones in my legs. I developed scoliosis in adulthood. I lost my baby teeth before preschool. My pain responds to almost nothing. These are all MAJOR indicators of Hypophosphotasia, marked by these clinical symptoms, and below normal levels of alkaline phosphotase in the blood. He was the first doctor to notice this. Normally, in his words, because it is even less known than EDS, they look only for extremely high levels of ALP, a marker for kidney failure.

He immediately consulted genetics as I was sent to the emergency room for treatment for the infection, which is now finally gone. I received a message the following Sunday night from him (seriously, he is THAT dedicated a physician) letting me know genetics agreed with him that it is extremely likely I have this condition and would be contacting me. Genetics says it is either this condition or another metabolic bone disorder, but by some stroke of luck, a company offers free testing for this condition, so currently, my spit is at a lab after my husband mailed it for me, because I was just too anxious.

How have I handled all of this? Well, I stopped using my mobility aids and have been acting like I’m a completely healthy and able-bodied person through incredible amounts of pain. I have tried to convince myself it’s not possible I have another condition doctors missed for years, especially one that was IN MY BLOODWORK by acting healthy and “fine.” That caught up to me today, in the middle of a grocery store aisle when I dropped something on the ground and realized I couldn’t bend far enough to pick it up. By the time I got home, I could barely leave the couch and had to use my wheelchair the rest of the day, mostly through tears and anger.

I’ve resolved to accept my reality no matter what it is. In fact, it could be good news to know exactly what is going on with my body and why I have had these struggles that do not necessarily line up specifically with EDS. I’ve also resolved to stop saying I’m fine when I’m not. I’ve resolved to stop trying to convince myself I’m fine when I’m not.

It’s a REALLY good idea to work on your mindset. You can work towards a positive attitude. You cannot trick your body in to having different DNA than it does. Sometimes, like I have written before, accepting your limits is okay. Sometimes, when someone asks how you are doing, it’s okay to say, “I’m in a lot of pain today, but my husband and I had a great dinner date last night” or “Thank you so much for asking; I’ve been having a really hard time with my health lately and I need someone to talk to.”

So, I’m not fine, but by accepting that, I think I will be much sooner.

If you have a chronic pain condition, you probably know just how much work it is to exist. I read one of those internet memes the other day that had me thinking. It said something like,

“No, you’re wrong. I’m not faking being sick. I’m faking being well.”

It made me laugh for a second. If you have EDS and have ever parked in a handicapped parking space without needing a wheelchair, you have probably had at least one person tell you not to park there. I have been accused by multiple people of seeking attention or pretending things are worse than they really are.

After I laughed, though, I started crying. You see, my pain has been absolutely out of control lately. I started a new job just under two months ago and my doctors and I already decided I can’t physically handle it. I have pushed myself every single day to get to my office and do my work, smiling and greeting people through pain, all the while my medications getting less and less effective and my wheelchair becoming more and more necessary. I used to come home after work at night and be able to enjoy myself. Now, less than six months in to my marriage, I find myself coming home from work and wanting to do nothing but lay in bed and watch TV because my body hurts so much. I work primarily in an office. I sit primarily behind a desk. Most people who see my at my job would never even guess that I get home and often choke back tears asking my husband to work knots out of my muscles and then cry as he has to push on the really painful spots because that’s the only way to get rid of them.

I quit my job. It broke my heart. I am not someone who quits a job after two months, but I know I cannot do it and I need to accept that, but I am still overcome with guilt thinking of what inconvenience I have caused others. I am someone guilty of measuring my value by my productivity and I do not feel productive.

I was back home over this past weekend for a family funeral. We lost a wonderful man. It was absolutely devastating–and the first time my extended family really saw me in my wheelchair. It was the first time my parents saw what happens to me after a full day of activity now. It was the first time people close to me realized how truly exhausting it is just to exist in a body that doesn’t work right. Between the emotional and physical pain, I am still tired almost a week later.

Why am I writing this post that seems like me just whining about how hard it’s been to be me lately (even though I promise you I actually do like being me)?

Because it can be lonely here and it should not have to be.

I am making a conscious choice to share these massive struggles with you, because I’ve read the struggles of others lately and I do not want them to feel alone. I want to remind the world that just because someone has pretty makeup on and a cute outfit doesn’t mean they aren’t in incredible pain–in fact, that makeup and clothing might be their best effort to hide it. I want the others who are currently in pain that feels out of control to know there are others who are laying in bed wishing they could go do something and feeling guilty for holding others back.

I am 28 years old and I cried on my mother’s lap this weekend about wishing I had a normal body.

Kids with EDS feel that way, too. They need to know it’s okay to feel that way sometimes. They need to know not to live there. They need to know sadness and grief over their condition is natural, but isolation is dangerous. They need to cry to a parent or a friend instead of hiding their pain until they cannot bear it anymore. We lose chronic pain patients to suicide because their mental health becomes too great a burden as they wish and hope for a “normal body” and have no outlet for those emotions.

I have made many mistakes in the last few months. I have overlooked the struggles of others while enduring my own. We must all work to see pain in ourselves and pain in others. We must avoid the loneliness and isolation of chronic pain and chronic illness. We must allow our emotions to have an outlet before they take control. When you lose another thing in your life because of this crappy condition, you are allowed to be angry. You are allowed to be sad. Your life, though, it is still beautiful. You are still wonderful. I think you will find in recognizing others’ pain, you may find relief and comfort for yours.

I may not be able to do the jobs I hoped I could do. I had dreams I can no longer achieve due to my physical limitations, but I also have new dreams I wouldn’t have if I didn’t have EDS. I’m going to work on those for a while. I’m going to remind myself of all the beautiful people in the world who don’t care if I look pretty and say I hurt; they believe me anyway (and want to know the name of my eyeshadow palette so they can look pretty through the pain, too).

Remember: I am here. We are here. Stay here.


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 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!

 

 

 

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.

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