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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.

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

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

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

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

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

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

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

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

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

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

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

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

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

Here’s why:

I haven’t improved since my last appointment.

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

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

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

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

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

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

Choosing to smile!

I was 26 the first time someone explained to me what FOMO was. I assumed it was a curse word. It turns out, though, it was the “fear of missing out,” this concept that you always worry that any time you aren’t “doing something,” you are missing out on “doing THE thing.” For a person with chronic illness, and especially a young person with chronic illness, FOMO almost seems like an acronym that should make our list of diagnoses…

  • Ehlers-Danlos Syndrome
  • Chronic Pain Syndrome
  • Myofascial Pain Syndrome
  • Fibromyalgia
  • Mast Cell Activation Disorder
  • Fear of Missing Out

I have always been the person who wanted to do everything. I saw my life as an opportunity to achieve everything. I made a to-do list of accomplishments and started checking them off. When I was 25, my health started declining. I got my EDS diagnosis and things started making sense. I thought I would suddenly be better. These last two years, though, my body has paid the price for years of not understanding what was “wrong.” I’ve paid the ultimate price for years of running on knees and ankles that dislocated. I’ve paid for the pain my gym teachers told me was “normal” and to “quit whining.”

Now, I’m 27 and my body is in pain a lot of the time. I see doctors frequently looking for a solution. BUT, I haven’t learned that sometimes it’s necessary to rest. I’m not always good at saying no. I’m not always good at staying home when I want to be out doing something else. If I had a dollar for every time I pushed my body harder than made sense, I’d probably never have to worry about bills for the rest of my days.

Here are the ways I’ve tried to cope with those days when FOMO isn’t just a fear, but a reality:

  • I made friends who understood. I used the internet and found support groups. I reached out through EDS spaces and realized I’m not the only young person feeling this way. I attended the EDS conference in September. There, I made a friend who lives in New York. BUT, she still sends me a text after every time she has  a doctor’s appointment. I still message her to check in. When I’m crying on the couch because I want to be out doing something with friends, I message her and realize she understands completely and without judgments. I’m so thankful for the friends in my life who don’t deal with chronic illness, but these connections who get it, they are absolutely CRITICAL on these days.
  • Acknowledge the frustration but DO NOT live there. If you pretend it doesn’t bother you, that usually makes it worse. Admitting you’re hurting over the unfairness of it is okay, but then, move on.
  • Find something fun and safe to do at home. We enjoy board games and video games as a family as well as play time with our puppy. Individually, I love coloring and painting artwork on my fingernails. Just because you’re at home doesn’t mean you can’t have fun.[contact-form-7 404 "Not Found"]
  • Find ways to enjoy the safe time. I remember looking sadly at a trampoline park with friends. I desperately wanted to jump on those springs more than I wanted anything in the world. I realized quickly, though, that it would take two seconds for me to get hurt there with my friends. Instead, my friends and I find things to do that are completely safe for me. When they want to do things I can’t do, I cope with that reality by finding things I enjoy in that off-time. My fiance and I spend time together and then I can meet up with them for a meal later. You don’t have to miss everything just because you have to miss some things.
  • Don’t push yourself for the sake of others. This is just not worth it. If you want to talk about this, I’ve got about 457 stories to tell you. But, it’s pretty self-explanatory. Take care of yourself. It’s worth it. I promise.
  • Find a good mental health specialist. I can’t tell you enough the value of therapy. It doesn’t make you crazy. Any person who pretends they could deal with endless chronic pain and a condition with no cure like EDS without feeling like they need someone to talk, frankly, is full of it (and you know what it is). I have had so many wonderful therapists help me face my realities. They are absolutely invaluable when it comes to facing this reality. You don’t have to be alone in this.

The FOMO is real. When you have a condition like EDS, sometimes missing out is for your own good. How you face that reality is up to you. You just don’t have to do it alone.

Remember, we aren’t a substitute for your doctors or mental health specialists. ALWAYS talk to them if you are struggling, please.

There are fun, safe things to do at home–like nail art!

CHANGE THEIR WORLD. CHANGE YOURS. THIS CHANGES EVERYTHING.