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I went in to see my doctor this week when he got me in at the last minute because of some major concerns he’s had about ongoing pain issues in my back, legs, and frankly, my backside. I have a wonderful pain management doctor and I’m so thankful to have the opportunity to work with him, but part of why I wanted to write here was to be able to share some of the raw truth I’ve otherwise written on my own social media posts in an effort to gain a wider audience for what I would consider my bold, unfiltered message of the side effects of this condition. This is the post I shared tonight on my own page. I hope it speaks to some of you. I hope it serves a greater purpose.

This week. What to even say about it?

I usually like to wrap up my doctor visits on social media because I’ve found that it’s helpful for both me and to aid other patients to understand what’s happening, but yesterday I didn’t. Why? Because I crossed the line from being sad about my situation into angry. When I crossed that line, I didn’t know how to tell you about it.

I spent my morning figuring out how to put on winged eyeliner hoping it would convince me not to cry in the exam room, but it didn’t work. Until you’ve had a doctor look at you and tell you he needs to “do some brainstorming,” you just don’t know what it’s like to go to the doctor hoping for an answer and feel just as helpless once you’re there. When he brought in a second specialist to start trying a new technique, I tried to be as open-minded as I could, but the last year and a half of getting worse finally was too much.

I choked out my tears and I told my doctor it was easier when I didn’t know what was wrong with me. I told him I wasn’t sad anymore; I was just angry about how unfair it all was to do everything right and follow all their stupid new rules and still end up in that room begging for help, asking for an answer. I told him I don’t want to do it anymore and I watched as that eyeliner turned into gray liquid and ran onto the plastic top of an exam table.

He’s a good doctor, a great one even. He told me what I needed to hear in that moment when I was completely and totally broken. But he can’t give me back the life I used to have—and that’s what I wanted yesterday, so I was, for lack of a better word, and as he said “scientifically speaking” pissed off.

So, here’s the truth. I try my best to be a role model of the chronically ill with severe chronic pain. I try to keep it together. But sometimes I get pissed off at my body and no matter how cute my outfit is and how great my makeup is, I would trade all of it for DNA that actually works.

But then I came back to town and I saw the people who build me up. I realized my mother-in-law drove all the way to Madison so I didn’t have to go alone. I talked to an old friend who doesn’t see me as any different than before all of this happened. And no matter how “pissed off” I get sometimes, I’m still going to be the girl with too many pictures on social media posting more words than you want to read.

Maybe someday they’ll cure EDS because I annoyed doctors so much they just wanted me to shut up.

Me, deciding to keep going even when that seems too hard. Notice the tattoo on my side. The EDS awareness ribbon surrounding the State of Wisconsin. I had them put a heart around my community–because the love around me is what keeps me going. Hopefully my words keep someone else going.

It’s 10pm or so on a Monday night. I probably shouldn’t be writing this post right now, but when I agreed to write this blog, part of what I wanted to do was be as real and as raw with you as possible, because I can’t be your doctor and I can’t make the medical “stuff” any better. What I can do is be brutally honest with you about the rest of it. What I can do is sit down at my computer when I don’t want to and write what’s actually on my mind. What I can do is post the blunt truth about the reality of this condition and what medical professionals generally don’t understand–and that’s the constant ebb and flow of the acceptance of your reality.

When I was diagnosed, it was this immediately rush of excitement. I finally understood all of the things that had happened to me all my life. I was 25. I had accomplished many things I had set out to do, but still, every day my body ached with a pain I couldn’t explain. Still, I had injuries that didn’t make sense for someone my age with my activity level. Still, I saw doctor after doctor and had test after test–result always coming up “normal” even though I often cried myself to sleep at night because the pain was sometimes so bad I just couldn’t handle it.

And on that day, on that “Diagnosis Day” as I’ve grown to call it, everything stopped. For just a second, my entire world stopped moving. I was alone in a room with a resident and I told him through laughter “don’t tell me I have EDS” because a close friend had told me two years before she knew what it was. He didn’t smile, though. He didn’t laugh. He turned his eyes to those 12×12 inch tiles on the floor and went out into the hallway to find his supervising doctor. He was excited when he got out there. He’d found his rarity. He’d found someone unique. He’d figured out a mystery of a patient who’d had test after test come up normal. He could put words on a chart that would make sense. He would get an A. I would get an incurable diagnosis–and a life that would never again be the same.

I wish I knew his name. I wish I could find him now and explain to him how different it is to be here now, at 10pm writing in my kitchen about this condition that changes everything I do. I wish I could explain to him that while he sees me as a breakthrough, I saw it as explanation and then as a curse. You see, I actually don’t ever see doctors as my enemies–not even the doctors who didn’t diagnose me throughout my life. I see them as the ones who pushed me a little bit harder. I see them as the reason I’m here writing this for you, you who might be reading this for a child who doesn’t yet have a diagnosis but who desperately needs one. I wish I could tell him that I didn’t need him to look at the tiles that day, that I needed him to look me in the eye and tell me that I wouldn’t have a cure, because until a doctor says those words you do, you never see your limits, you keep pushing your body too hard–and when you have EDS, that might mean paying for pushing those limits in pain and injuries. You won’t ever understand what it is to have a condition you’ve never heard of until the day it’s actually in print on your chart, even when the doctors say the words to you, even when you say the words to those you love, even when you write them down the first time–none of them mean anything until an MD etches it down in the permanent record of your life. That’s when it changes. That rush of excitement you have when you finally understand what is different about your body lasts for a period, but then you realize there is no medication to “fix” this, no antibiotic to take for seven days to rid you of this infection. Your DNA is not like a “normal” body and you will have this every day for the rest of your life. That’s when the excitement can become terror, anxiety, or depression. For me, it become all three. At once. It was super fun.

I’m here to tell you that the idea of acceptance, at least for me, comes and goes. Some days, I’m at terms with my reality and I accept that my body has limitations other people my age don’t face. I accept that because of how much EDS affected my lower extremities as a child, I now need a handicap parking permit and I will face the stares and whispers of strangers in a parking lot on a cold, icy winter day when there is zero chance I could safely navigate the entire length of a parking lot. Then there are the days when I refuse to believe it. On those days, I push my body past its limits. I decide that collagen is my enemy and I will conquer it. I decide that every extraordinary person said that limits did not exist and I exceed them instead of recognizing that I can accomplish amazing things well within the safety of what my body can handle. On those days, I cry. I cry over my laptop at night, because I think about how different my body feels. I cry when I think about the naive young girl who thought she could run a half marathon. I cry over the girl who thought the worst challenge in her life would be two leg surgeries in high school. I cry over the future and the things I don’t even understand yet.

But then, I decide life is just too much worth living to stay there. I have always believed those moments are okay. I have always believed that you are allowed to visit those moments of self-pity, as long as you don’t move-in or make it an extended vacation.

Tonight, I’m sitting in my kitchen, wiping up a few tears over my laptop because tomorrow I’m getting up at 5am to go to physical therapy at a hospital again instead of having coffee and relaxing before work. I decided to make those tears mean more than just self-pity, though. I wanted them to mean something for all of you. So, here I am, writing down the raw truth about accepting an incurable condition.

Some days, I do. Some days, I don’t.

But, every day, I live.

My staff had a whole day last EDS Awareness Month to recognize what I deal with. It meant the world.

This is probably the blog I’ve been most interested in writing since I agreed to write here, in this medium, for all of you. I’ve needed to write this here for two reasons:

  1. For those of you who understand and need someone who feels it, too
  2. For those of you who DO NOT understand and needs someone to break it down for you

If I had to list the most frustrating things about having Ehlers-Danlos Syndrome, the first one would be that there is no cure/easy fix. The VERY CLOSE second thing would be that you cannot see at all that I am dealing with this very harsh reality. Unless I have literally dislocated a joint in front of you, you have no idea that I deal with this condition or what I am handling on a daily basis.

A Typical 20-Something Selfie

So, here is me. If you know me personally, you’ve probably seen a few photos like this. I enjoy doing my hair and makeup. I love picking out clothes and finding jewelry to match. I even paint fingernail art, because it calms my anxiety and it’s actually something I taught myself how to do during my many major leg surgeries in high school.

The problem is, that people who don’t know me, also see this person daily. The problem is, when I park in a handicap parking space because I wear braces on both of my legs under my clothes and regularly dislocate the joints that connect my legs to my back, people see a blonde, well-dressed, make-up 20-something–and let me tell, they are NOT quiet about their thoughts on it. I regularly hear from people that I don’t look ill. I regularly hear that I don’t look like “anything is wrong with me.” I read a meme once that said “When you say I don’t look sick, I’m not sure if you’re insulting me or asking what concealer I use.” It made me smile, because for a second it took away the hurt of realizing people are judging me every day without understanding what is happening with my body, without understanding the sort of pain that can come with my multiple chronic conditions.

People with EDS also struggle because we don’t always have consistency in our reliance on mobility aids or our need for assistance. If I had a dime for every time someone made a crack about me “faking it” because I was no longer using a cane or crutches after working my butt off in physical therapy and having a “good day,” I would be a retired 27-year old. Some days, I have visible braces on multiple parts of my body. Some days, I need my crutches. Some days, I use a cane. Some days, I can’t really walk at all and I need to stay home. If you think the inconsistency is become I’m faking it and not because my body is inconsistent, I will happily trade you!

I think the problem is two-fold because sometimes, when I explain the condition, I’m told that if I’m dealing with that, I couldn’t really look nice or put the effort into my appearance. I’m told I couldn’t be working or doing what I’m doing with my life. It becomes a situation where it is impossible to win, because I’m seeking attention if I don’t make the effort to conceal how poor I feel and I don’t feel poorly if I do conceal it.

I enjoy putting together outfits and wearing makeup. For me, when I look better, I feel better–if only psychologically. When my body feels like it is absolutely falling apart and nothing is in my control, I see no harm in still feeling good about how I look.

There is no uniform for the chronically ill. You are NOT required to conform to someone’s expectations of what a “sick” person should look like. You do not need to justify to yourself or anyone that you do not “look sick” enough so therefore, your struggles are not as real or not as valid as those more visible. There is nothing fair about this situation–it is particularly unfair that it regularly includes providing context for who you are and how your body is simply because its outward appearance doesn’t match its internal composition.

You owe neither an apology nor an explanation for that.

“But You Don’t Look Sick” Oh Well.

Hello Readers:

I was reminded this week about the importance of the phrase “how are you.” More importantly, I was reminded about how important it is to want and expect a truthful answer. Too often, I think all of us are expecting everyone we ask to answer “fine” or “good.” We don’t want to hear about the stress and anxiety weighing them down. We don’t want to know about what is making them worry about getting through the day.

For someone with a chronic pain problem, this is especially challenging. We learn how to say “I’m good” every time someone asks, even if we are hurting more than we can handle.

For the last few months, my pain has gotten much worse than it ever has been. My doctors have really been struggling to find solutions for me. While I know some in this community have a penchant for complaints about doctors, my pain management team is honestly a wonderful team of healthcare providers and I can’t imagine a better group of people to manage my life. Despite that, though, my body is putting up a fight. It isn’t handling everything I’m throwing at it. I’m having to limit activity more than I’d like and say “no” when all I want to do is say “yes.”

I’m not here to offer you medical advice, because you all have doctors for that. What I’m here to do is offer you some advice for facing the reality of that situation. I had a procedure last week that didn’t work. Since then, I’ve been in what I would consider the worst pain of my life–at least a 9 every minute of the day. Today, after 7 hours at work, I couldn’t even move it hurt so badly. Because I have always been a hard worker who never likes to admit I need a break, I waited until the pain got THAT BAD before I came home. I’ve also been steadily working on my graduate degree part-time for about two years while working full-time and serving on the city council in my community. This semester, with all the pain, I didn’t think I could handle attending school.

In both cases, I have needed people around me to reassure me I’m not a failure for needing the breaks. As I’m writing these words to you, I’m on my couch in immense pain watching another documentary on Netflix while I choke back tears–and I want you know right now, on those bad pain days, when you need those breaks, you are not a failure. If you need someone to tell you that, I hope you bookmark this post and read it over and over again. You are not the summation of the days your body needed a break. You are a summation of the days that your body needed a break but you are still LIVING.

So, here are my bits of non-medical advice for bad pain days:

  • Coloring books: I never tire of coloring. We keep a ton of them in our apartment to make the hardest days better. We keep a binder of my completed artwork just like a proud kid. It relaxes me and distracts me from the pain. It’s also productive and helpful.
  • Comfortable clothes: On a bad pain day, I’m always in comfortable clothes. I could probably live in yoga pants if I wouldn’t look so silly at a city council meeting in them. I also like to wear clothes that bring me joy. I try not to underestimate how much joy helps on these days. One example is–I’m a huge Taylor Swift fan so on a bad pain day, I’ll wear a Taylor Swift t-shirt that makes me smile.
  • Binge Watching: I’m only half-joking when I use the word “binge” here. We all know activity is good, but on a day when the pain is too bad, rest is good, too. When you’re having a rest day, never underestimate the value of a good streaming service–even for some bad television. I am personally endlessly fascinated by documentaries. I have seen documentaries on so many topics, I couldn’t even begin to tell you. I love learning and it helps me feel comfort to be learning while I’m resting. But…I also like binge watching reality television. Both are equally valid.
  • Fur Babies: My dog, Essex, is a prescribed emotional support animal and she gives the best cuddles in the world. If you have a pet, you shouldn’t undervalue their presence when you don’t feel well. Essex isn’t quite a year old, so she’s still pretty naughty, but when I’m in a lot of pain, she seems to know and she will cuddle up with me and try to make me better. I just adore the time I get with her.

    Just One of my Pain Day Recommendations–Fur Baby Cuddles (Essex, 11 Month Old Papillon) 

  • Writing: Even if you aren’t like me and don’t want to share with the world, journaling is a great way to release how you’re feeling. You may not be able to make your pain go away, but releasing how your feel emotionally about that pain is always a good idea. I regularly journal and doodle my thoughts about what I’m going through. I recommend getting a pretty journal that you enjoy and just writing down what you’re thinking somewhere you don’t feel any judgment.
  • FIND SOMEONE TO TALK TO: This is probably the most important thing. No matter who you are, we all need people sometimes. You don’t need to feel bad for needing someone to talk to. If you’re reading this and you need someone to talk to, I’m happy to be that person for you. Find a friend, family, someone in a support group–really anyone–you can turn to without hesitation. I can’t even tell you how often I turn to the people in my life. I made a dear friend in Whitewater, Lisa, and even though she doesn’t have EDS, she has such tremendous compassion for my experiences. On the days when it’s the worst, I know I can turn to her when I just want to cry and release how I’m feeling. I never feel like I’m whining and I never worry that she’s going to judge me. We all deserve that level of person in our life.

If and when you have this kind of day, I’m sorry. Today is that kind of day for me. Someone asked me “how are you” today and I told the truth. She told me to go home from work. I listened.

It was for my own good.

You need to do what’s best for you, too.

Gentle zebra hugs always,

Stephanie

 

Hello Readers! I’m so thankful to have this opportunity to share my thoughts through this medium. I think before I get too far into blogging with EDS Wisconsin, I should tell you why you should even bother reading what I have to say (or in this case, write.)

My name is Stephanie and I am a 27 year old EDS patient who lives in southern Wisconsin. I was diagnosed just about two years ago now after nearly 13.5 years of begging doctors to explain my body to me. After my diagnosis, I turned a lot to the internet and made a lot of new friends.

More importantly, though, after my diagnosis, I began writing very candidly on my personal social media accounts about my experiences with Ehlers-Danlos Syndrome and the other medical challenges I have faced. These don’t necessarily just include my experiences with doctors and medical facilities, they also include the social challenges that come with being 27 and chronically ill. I’ve told the truth about being in too much pain to do things I want to do. I’ve acknowledged the frustration and anger that come with “not looking sick,” but feeling like you are falling apart.

Why do I do that? Well, in my life, I have two great passions: advocacy and writing. I’ve had the advocacy bug since as far back as I can remember. If I felt something was a worthwhile cause, I would pour my heart and soul into it. I’ve actively served my community through local government since I was 20 years old. I’ve learned to raise my voice for people who don’t always have a voice or maybe don’t feel comfortable using it. The writing, I think, was a gift I was given to make up for a body that I often feel fails me. I have always found great comfort in words, because even when I am in the most agonizing pain or facing a harsh reality, I can release that through language—and when I can share with the world, it can help others, too.

At the end of the day, that’s really what made me do it more than anything. After a few months of sharing very openly about what exactly I had been through with my diagnosis, a cousin reached out to me about her young daughter–a young daughter who was facing all of the challenges I faced at her age and could never, ever understand. Those same challenges made my childhood painful and haunted me even into adulthood. She was able to take her daughter to an EDS specialist who got her diagnosed RIGHT AWAY. Now she understands what makes her body different. Now she has the physical therapy exercises she needs to hopefully limit some of the damage I know happened to me because we never understood–because my doctors didn’t either, because as I cried on the track in middle school gym, I was told “everyone’s legs hurt” and when my chronic knee dislocations in high school ended in a surgery, nobody asked why that would happen to a 15-year old. That won’t happen to that little girl. If I never help anyone else by sharing my experiences, it will be worth it for her.

But I’m not a doctor and I won’t give you medical advice. I will tell you what I feel and how it affects me. I will tell you that if you are a patient, we probably share experiences. I will tell you that if you are a parent, the greatest thing you can do is fight for your child. Finally, I will tell you that if you are a healthcare provider, the greatest thing you can do is listen.

If you want to know who I am just for the fun of it outside of being a patient, because absolutely NONE of us are patients FIRST, I’m also engaged to be married this summer to a wonderful man. I have the cutest puppy in the entire world. I work with college students in apartment rentals. I serve on my city council. AND, I’m getting a graduate degree in Business Management.

Let me know what you want me to write about. I’m really here to serve YOU!

Together we are stronger!

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