News

As I sit here rounding out a belated Thanksgiving celebration with my husband’s family, I am reminded of the things about life with EDS that make holidays especially challenging–and these vary from person to person. For me this holiday, I am struggling with significant spinal pain that has me using evenings in hot baths and bed to get relief rather than around the table desperately trying to be interested in a board game I don’t understand.

             My Crew This Thanksgiving

For many of you, these pain limitations are shared. Maybe you have family members who think Thanksgiving is the ideal day to run a 5K and you rely on a mobility aid or simply cannot handle such distances. Maybe your family plays some sort of amateur football game with just enough tackling to dislocate your shoulder or knee, rendering you on the bench and refereeing instead of scoring a touchdown.

Then, there are food restrictions. These can be hard to understand for people who have always been able to eat what they want and exhausting as you try to explain MCAS for the 86th time that day–or just look longingly at someone else’s pie or dinner role.

Maybe you’re surrounded by people pregnant or with babies and you desperately want to be a parent but can’t–and while NEARLY every part of you is happy for them, there’s this tiny part of you wishing you were sharing that experience with them, nagging at you as you smile, your conscious mind begging you not to cry.

And, it would be wrong not to acknowledge our EDS friends who are unable to experience group gatherings due to the severity of their symptoms. It can feel even more isolating on these “special” days.

So, how do we deal with these things? (Because right now, this just sounds like a list of all the things I want to whine about.)

If it’s possible, find someone to be your support system as an individual away from the crowd, who will check in with you with the empathy needed. My husband takes time to check in periodically and also knows the signs of my symptoms flaring without me needing to voice them. He will do what he can to get me to mitigate them when I tend to downplay them in an effort not to take away from a gathering.

Prepare how to handle conversations and decide where your boundaries are. If you are comfortable explaining things, you may want to practice how you will do so. If you don’t want to explain them, remember that you don’t actually have to. Outside those determining your treatment plan, no explanation is necessary. You may find it helpful to prepare how to best draw those boundaries.

If there is a chance you will hit your limit before the natural conclusion of an event, forgive yourself for that and allow yourself the freedom to leave. You owe your mind and body peace far more than you owe a group of people socializing or more time eating. Those who love you and know you best know you are doing what is necessary.

Finally, remember you are uniquely you and just because another EDS patient was able to do more than you does not make you less than them. This Thanksgiving, I’m thankful for all of you, all you show me every day, and surviving another year in this body.

I recently heard a young person (I know; it’s crazy when we stop fitting in this category) use the phrase “doing the most” to describe a person going over the top–and they didn’t mean it in a good way. It’s a little funny when you think about it, though–“doing the most” should really be a good thing. However, I think as EDS and HSD patients, we treat ourselves much the same way when it comes to self-advocacy with doctors and it probably starts with the fact that so many medical professionals treat us exactly the same way. Here’s what I mean–when we push for answers and help by, in a literal sense doing the most, we are seen as pushy hypochondriacs or people who have done a few too many Google searches, maybe people who have self-diagnosed, maybe people whose tests up to now look “normal” and therefore nothing is wrong except what’s in our heads, we judge ourselves just like those young people. We see ourselves with that same negative connotation. The self-degradation sets in like POTS in summer weather with no Gatorade.

Over time, this degradation contributes to medical trauma (medical trauma ultimately the responsibility of a system in which so much advocacy should not be necessary but that’s another topic for another day). It drives us to stop seeking answers and advocating. It pushes us to isolate and over time, we may even begin to believe we are crazy. I heard once the average time of diagnosis from onset of symptoms for an EDS patient was over 22 years (I can’t cite a source here and this has likely changed; don’t come for me). When you think about what 22 years looks like–if that period of time were a human being, they could graduate college. That is a college graduate worth of years feeling crazy and begging for answers from any number of medical professionals who make you feel even more like a crazy person. AND, that’s only on average. Imagine you are the outlier. You are the person who is in your 50’s at time of diagnosis having spend decades collecting traumatic experiences like I collect Taylor Swift merchandise. Trauma doesn’t just change the mind. Trauma changes the body. Society fails to see medical trauma as real trauma so often and we deserve better.

I suppose I have begun to ramble yet again and missed the point entirely, so I’m going to attempt to do something helpful rather than continue down a negative path.  I was fortunate to be surrounded by people who made sure I didn’t stop pushing no matter how discouraged I got. They didn’t let me give up even when I was told for the 857th time if I lost weight I would feel better, even when that turned into an eating disorder and I still didn’t feel any better, even when another orthopedic doctor told me they couldn’t explain why surgeries either needed to be done or had failed. In this way, I learned quickly how to “do the most.” What that meant was when one doctor didn’t have an answer, they weren’t the right doctor–not that nothing was wrong. What that meant was when a doctor spoke to me in a way that had me sobbing in the car on the way home, we called and filed a complaint with the system, even if all that did was put some note in some file somewhere. What that meant was making a list before every appointment of what needed to be done and if it didn’t happen, we moved on. What that meant was making sure when I was ready to give up, nobody else around me was.

In reality, I’m not that good at this myself. I’m a “do as I say” person and I can advocate fiercely for all of you. (I’ll go to the doctor with you if you need.) I think how I have learned to “do the most” is by bringing my husband who has learned the means by which to get me the help I need. He won’t leave a doctor’s office until he asks every question. He keeps detailed records of all my medical bills, every visit, procedure, and prescription. He reminds me all the time that I am not a bother to these professionals AND that even if I am, it is their responsibility to accept that bother. He has helped me exercise when I have needed it and made sure I rest when I would otherwise push my body too far. He will run to get me electrolytes in a POTS episode, made sure I refill my medications, and picked them up whenever necessary. He helped me get my emotional support animal and manages the pet insurance for them as well.

Sometimes, the best way to advocate for ourselves is to accept there are times when we are simply too weary to do so. Sometimes, we do the most by recognizing others love us on our medical battlefields when that trauma causes us to freeze up. All the best intentions and the most lists won’t help when we get flashbacks on every exam table. Wars are not won by a single soldier. You don’t need to win by yourself either and we are all here to back you up.

I have also made progress in my ability to do the most by recognizing my need for mental health assistance. Let me be clear–this is not because my pain or disease are imaginary. This is because living with my pain, disease, and other things in my life is simply too much to handle without that help. I will never forget the psychiatrist to whom I said I had heard my pain was in my head for so long I was convinced it was. He looked me in the eye and said, “of course it is; that’s where we feel pain.” It was this moment of profound insight. He took this sentence I said and changed its meaning in a single sentence. From that moment, whenever I feel my pain is in my head because of a flashback, I giggle a bit and tell myself “of course it is.” I go to therapy every week and I love my therapist. When I saw one I didn’t love, I moved on. My therapist has researched EDS and has another patient with it as well. This has given her immense insight and not only makes her better with me but she says it makes her a better therapist all around. I agree. Don’t be afraid to ask for this professional help either.

I guess what I’m saying at the end of the day–no matter what any young person says, “doing the most” in this part of your life is not only helpful, it is necessary. You deserve the best treatment, the right diagnoses, and a community of people around you who understand and support you. I hope you will use this community to help you find professionals who make doing the most require less of your energy, less exhaustion, and less frustration–and I hope as you have read this, you know even more that you are not alone.

My Advocate

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

Fatal error: Uncaught Error: array_key_exists(): Argument #2 ($array) must be of type array, bool given
in /var/www/wp-content/themes/charity-wpl/inc/get-layout.php on line 33

Call stack:

  1. wplook_get_post_gallery_image()
    wp-includes/class-wp-hook.php:324
  2. WP_Hook::apply_filters()
    wp-includes/class-wp-hook.php:348
  3. WP_Hook::do_action()
    wp-includes/plugin.php:517
  4. do_action()
    wp-content/themes/charity-wpl/content-gallery.php:14
  5. require()
    wp-includes/template.php:792
  6. load_template()
    wp-includes/template.php:725
  7. locate_template()
    wp-includes/general-template.php:206
  8. get_template_part()
    wp-content/themes/charity-wpl/index.php:63
  9. include()
    wp-includes/template-loader.php:106
  10. require_once()
    wp-blog-header.php:19
  11. require()
    index.php:17

Query Monitor


Fatal error: Uncaught TypeError: array_key_exists(): Argument #2 ($array) must be of type array, bool given in /var/www/wp-content/themes/charity-wpl/inc/get-layout.php:33 Stack trace: #0 /var/www/wp-includes/class-wp-hook.php(324): wplook_get_post_gallery_image('') #1 /var/www/wp-includes/class-wp-hook.php(348): WP_Hook->apply_filters('', Array) #2 /var/www/wp-includes/plugin.php(517): WP_Hook->do_action(Array) #3 /var/www/wp-content/themes/charity-wpl/content-gallery.php(14): do_action('wplook_post_gal...') #4 /var/www/wp-includes/template.php(792): require('/var/www/wp-con...') #5 /var/www/wp-includes/template.php(725): load_template('/var/www/wp-con...', false, Array) #6 /var/www/wp-includes/general-template.php(206): locate_template(Array, true, false, Array) #7 /var/www/wp-content/themes/charity-wpl/index.php(63): get_template_part('content', 'gallery') #8 /var/www/wp-includes/template-loader.php(106): include('/var/www/wp-con...') #9 /var/www/wp-blog-header.php(19): require_once('/var/www/wp-inc...') #10 /var/www/index.php(17): require('/var/www/wp-blo...') #11 {main} thrown in /var/www/wp-content/themes/charity-wpl/inc/get-layout.php on line 33
WordPress › Error

There has been a critical error on this website.

Learn more about troubleshooting WordPress.