four people wearing ehlers-danlos syndrome awareness ribbons

Why I Want Widespread Recognition of Ehlers-Danlos Syndrome


It may seem selfish, and honestly, it kind of is. You see, there aren’t many people who are fighting in my corner, or the corners of those like me. So, I had to take it upon myself. I have been handing out awareness ribbons for my illness, Ehlers-Danlos syndrome, the rare connective tissue disorder that plagues me and several of those I love. It causes pain, discomfort, multi-system complications and there is nothing we can do to stop it. Not yet, anyway.

And so, as we approach Invisible Disabilities Awareness Week, I hope those I have given my ribbons to will wear them and tell people about them. Spread the word about my condition and other rare diseases that cause invisible disabilities, because you might tell someone who becomes intrigued, angry or even just confused about my condition and that person will tell another person about the plight of the “zebra,” and the word will spread. Right now, there is nothing I can do to halt my condition’s progression. There is nothing I can do to alleviate the pressure and the pain of so many others like myself, but I do have hope. I have hope that one day there will be. But the only way we can promote that hope, spread that hope, is to raise awareness.

It all started last week. I left a meeting with an advisor at my university. We had talked about the joint degree program I am hoping to enter. I was thinking about my future. The thing is, when I think of my future, I can picture all of the things as I would want them to be, but I can’t actually picture myself. I can imagine what I would like to do in this situation or how I would like to be pursuing my career, but I cannot conjure an actual image of myself. This is because I don’t know what I will look like. I don’t know if I will be walking freely but cautiously, or with my cane that I hesitated to buy but now is with me every time I leave my apartment, or wearing braces, or using crutches recovering from surgery. I just don’t know.

I had never thought about this, never noticed my own absence in my future until that day, when walking home from that meeting, a woman approached me. I was hardly paying attention, minding my business, waiting to be able to cross the street and she said to me, “What’s wrong with you?” My first thought was, “Oh my gosh, what did I do?” I couldn’t think of anything. I said with a slight smile, “I’m sorry?” She didn’t hesitate at all, and repeated herself, “What’s wrong with you?” but this time she gave me a hint – she eyed my cane. Of course, I was shocked. I couldn’t believe someone would just walk up to somebody and ask that, but I wanted to be informative. I explained that I have Ehlers-Danlos syndrome and the effects of it on my body. She nodded and said, “Well, you still seem happy anyway,” and she walked away.

I was left to my own thoughts of shock, anger and confusion. None of those emotions have subsided yet (and it’s been two weeks), but I also gained determination. I understand it is often a shock to see such a young and seemingly jubilant, healthy woman walk around with a cane. I have heard everything from insults to praise walking around with that thing, but what often seems to be missing is the acknowledgment of what is causing me to have the cane. I have been on a mission to spread the stripes of EDS to as many people as I can reach. I ordered some zebra print ribbon online and spent one evening cutting it and fitting it with safety pins. I even made up a little information slip explaining EDS and urging people to go online to find out more.

four people wearing ehlers-danlos syndrome awareness ribbons

I have no idea if they will wear it. I have no idea if they will read it. I have no idea what they will do, but at least I know the information is out there. At least I have tried to reduce the odds that another woman will ask me what is wrong with me. It is selfish. But it is also for the good of all zebras. All we want is recognition. We can’t have a treatment or even a cure without recognition.

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old photo of a mother and her young daughter

Dear Mom: Please Understand That My Illness Is Valid and Real


Dear mom,

After our family vacation last weekend, I have become resigned to the fact that you will not accept my disability anytime in the near future. I know my life and health are drastically different than they were five years ago, but that is the joy of living with Ehlers-Danlos syndrome. Every time I try to explain my pain in the hopes you will finally “get it,” I just start crying, so here’s hoping that writing it all down will go a little smoother:

I am not faking my pain. I live every minute of every day in excruciating pain. When I wake up in the morning, at least three of my joints are dislocated. I have to take a stimulant every morning that makes me nauseous and gives me a migraine just so I can stay awake and hold a full-time job. I face discrimination in my workplace and hear snarky comments from my coworkers on a daily basis because I look so “normal,” yet I use a wheelchair. I can no longer have sex with my husband because my skin tears and I contract a UTI each time we attempt anything. But I am used to these things. I have learned to approach life with a sense of humor and be grateful that my husband and friends love me unconditionally.

old photo of a mother and her young daughter

 

What I cannot get used to and what hurts me the most is your reaction to my disability. I am not being selfish by requesting that we go to wheelchair-friendly places. I am tired of sitting in the car like a dog because you refuse to acknowledge that I cannot walk more than a tenth of a mile before my knees give out. Whenever we go places as a family, I want to feel included and valued. I want you to acknowledge that my pain is valid and real. I want you to be understanding that if I need to stop and rest somewhere, that is OK. Every time I try to explain what I go through, all I hear is “Well, my knees hurt too.” Your knees have never hurt to the point where you have considered elective amputation in order to get your life back. I have started and stopped my SSD application at least five times because I am torn between doing a job I love and doing what is best for my body.

The most important thing I want you to know is just how exhausting it is having to hide my disability from you. This letter is my way of saying I am done hiding. I am still the same goofy, disorganized person I was before I started using a wheelchair. I still love corny romantic movies, teaching and spending time with my pets. I am just a little wiser and braver now. I love myself and wish you could love every part of me too. I hope that one day we can mend our relationship and value each other as individuals. I love you.

Love,

Your daughter

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How Ehlers-Danlos Syndrome Influences My Anxiety


Have you ever had those times when you weren’t nervous about something… and then the fact that you weren’t nervous, in turn, made you nervous? Welcome to the world with a chronic condition. I have been living with Ehlers-Danlos syndrome and anxiety my entire life but it wasn’t until recently that I realized these two were connected.

But it makes sense! Someone else looks at a water park and thinks how many hours of watery fun it would be, I look at it and picture how many joints I would dislocate from going down one slide. Someone else looks at a hiking trail as a nice relaxing escape into nature, I see myself rolling my ankle on the first rock on the path. Even a simple 10-minute walk has its risks. It is because of this awareness that I’ve noticed this makes its mark on my mental health.

 

Unfortunately, many times the fear of what “could be” or what “could happen” outweighs the possible positive experience. But to be honest, that 10 percent of the bad experience happening isn’t worth the risk.

Overdoing it can take my body days or even weeks to recover. There’s so many things I can’t control about my body but if there is something I have a choice about, you can bet I’m going to make it.

What someone else may not understand is the fact that every single thing I do in my life is calculated. That walk to the fridge is calculated. Getting the mail down our driveway (it’s a long driveway) is calculated. You may be able to literally “run to the store” to grab milk, but I can’t. If I’m having a sore day, I have to make the decision to have dry cereal that day. Every little thing has its risks which “normal” people don’t realize. I, of course, realize this when I raise my hand in the universal “thank you” motion while driving and my shoulder subluxes.

All in all, my condition affects my mental health on a daily basis, but that doesn’t mean I let it have control. I can’t ignore it, but it doesn’t get to drive, so to speak. So don’t get discouraged! Just listen to your body and it should return the favor for you.

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Thinkstock photo via ARTQU.

illustration of woman sitting at a table and looking upset

When I Realized That Giving Up Is Part of My hEDS Crisis Plan


I have had an amazing weekend. I pushed through pain and exhaustion and managed to attend the HMSA and EDS UK Management & Well-being Conference 2017.

The conference has to go down as a high of this year, this decade and actually, even my life so far. From the second I walked into the hotel with my daughter, I felt like I had come home. I finally felt like I belonged.

It is inevitable that throughout my life, I have felt like a misfit. Like I was a “second,” or a degenerate. I very much identified with Jerome in the film “Gattaca” – an “in-valid” – genetically flawed. As a teenager, I watched this film multiple times in my bedroom, silently, with tears falling.

I look at my eldest daughter, who already feels different at the age of 9. But this is where the hardest part of realization emerges. We are different. We are constantly in pain. As one of the speakers at the conference said, children, especially with hypermobile Ehlers-Danlos syndrome (or hypermobility spectrum disorder), don’t tend to tell us until their pain has reached an eight or nine out of 10. And I guess us adults are the same. The pain has always been there, and always will be. Our normal sits between four to seven out of 10 most days probably. But that does not mean we are flawed.

 

I left the conference feeling empowered, strong, happy, confident – with many new friends. New ideas, new knowledge, new hope, new inspiration!

And then it happened… I crashed. Metaphorically speaking of course.

I am unable to sleep in a bed, due to my extremely unstable shoulder and pain in my hips and pelvis. At home, I sleep propped up with a 12-foot U-pillow on our sofa. I didn’t have this option while we were staying in the hotel, and I was utterly exhausted after the conference, so my body dared to sleep longer than it normally would. The result – a severely subluxed shoulder when I woke – it was pretty visible too – sat forwards probably nearing an inch further than my “good” shoulder.

I tried every technique I know to reduce my shoulder (i.e. put it back in place). But it would not budge. I actually coped fairly well for most of the day – I didn’t panic, we visited friends, I managed.

Driving back, we got stuck in traffic – I was so uncomfortable in the passenger seat that I tried to reposition myself, as all the sitting had made my hip yelp and scream. As I pushed on the car door…

Pop.

Hold breath. Clench face. Close eyes. Internally use lots of sweary words. Breathe. Hold breath again. Externally howl. Finally attempt to move.

Pop again.

Repeat the above with a few external swears under breath.

My shoulder was back in place.

First came relief. Thank the Lord or Universe or whatever I’m not sure I believe in. I could breathe again. I had also discovered a new technique to relocate my shoulder – so next came joy. Mixed in here were some tears. And then, very abruptly, I suddenly noticed the pain. Oh the pain. I was almost sick. I started to panic. By some kind of miracle, we were literally a few minutes from a service station.

I found a comfortable arm chair in a coffee shop, and sat. Once I sat, I cried. I felt angry. There were other emotions, but I think angry outweighed most of them. Angry I cannot do anything without a cost. Without a “crash” at the end. Angry that something so positive and hopeful had been wiped out temporarily by this. And it will only be temporarily, I promise that to myself.

Fast forward to today. It’s one of those days where I have had tears in my eyes all day. They have escaped numerous times. Sometimes consciously, and sometimes not.

I have done everything I know I should be doing – I cancelled phone calls that could wait. I slowed down to a snail’s pace. I (reluctantly) took my painkillers, despite the severe constipation they cause. I did something I enjoy (sat in a coffee shop and listened to music). I managed to get the pen my daughter needs for school – that could not be cancelled – that was my priority for the day. Lastly, I managed to admit to my loved ones that I’m not coping.

I have done everything in a textbook manner – this is my crisis plan, pulled out of the bag. I should feel proud! I should be clicking my heels (not literally, obvs!).

Instead, I feel guilty. I feel like today, I am failing. It has allowed the ruminating thoughts to roam through my brain. Words of people I believed loved me telling me what I am and what I am not. That I am a negative person. That I am a drain on all of those around me. That I am null and void.

Today, today I don’t have the energy to fight the rumination. I have allowed those thoughts and words to take over. I know I’ll be strong enough at some point to fight back again. Months, actual months without these toxic thoughts, a massive period of recovery. I had, or rather have, reached a period of the best mental health I’ve ever seen. But today, today has slapped me round the face. Mental illness has come around to remind me it’s still there, laughing at me.

The anger emerges again now. Angry I still have to fight, fight for people around me to believe I suffer in this way – both physically and mentally. I had yet another assessment last week, so that a stranger could decide if I’m unwell enough not to work.

Angry that over the years, loved ones have walked away from me when I’ve been unwell – that the me who remains underneath, has not been enough for them to stay. Their parting words spinning round like an internal tornado, destroying any positive thoughts that try to break through.

Angry at myself, that today, I have given in. But you see, today I chose to give in. Part of my crisis plan I realize, is to give in. This is my “real” – this is my life; hEDS and mental illness are part of me. By fighting them, I am just setting up another boom and bust cycle.

By giving up fighting, I have the energy and strength to snuggle up with my girls, eating muffins and watching Mrs. Doubtfire.

So today, I give in. Today, I will cry. I will mull over the thoughts I can’t get rid of. Today, I will hang on to those precious memories of the weekend – of the people I met, who were so friendly and kind. Today, I will focus on all of those people who do love the real me, who choose to stay, despite my bad days. Today, I will remember how strong I am, of the many days like this I have endured. Today, I will also feel proud. Proud I am making a difference, that my articles are raising awareness. But most of all, that today, I have chosen to give in.

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Thinkstock photo via corbac40.

taking it one spoon at a time

3 Self-Care Tips for People Who Have Run Out of Spoons


If you’re like me, at one point in your life you’ve stumbled across the Spoon Theory – be it through a friend, a doctor or the internet. If you haven’t, allow me to share.

I was going through a painful flare-up at the time and feeling ever so useless when my therapist informed me about the Spoon Theory, a metaphor for people with chronic illnesses that changed my life. The Spoon Theory dictates that every person is given a specific amount of spoons and that to complete any task or action requires a different amount of them. Once you’ve used all your spoons for the day, they’re gone, forever, and you have to wait for another day to receive more.

People with disabilities, however, receive fewer spoons, and therefore are unable to do as much as others.

 

This theory at first gave me comfort. It was extremely validating to know there was a theory out there for people like me who are unable to do everyday basic tasks without it seeming like the end of the world.

But then, one morning, I woke up without any spoons. I had nothing – not even a makeshift-out-of-foil-spoon you make when you forget to pack one with your yogurt. I had no energy left to my name and all of the pain, yet I had responsibilities that must be taken care of.

If you’re like me, you’ve woken up without spoons. And if you’re like me, you often find yourself lost and not knowing how to practice self-care. Here are some tips I’ve come up with throughout my journey.

1. Makeup Remover Pads

Instead of washing my face with soap and water, exfoliating, moisturizing and doing all the various other things I should probably do to my face, I rely on makeup remover wipes. They remove the dirt and take minimal effort. This will keep you feeling semi-clean on the days you can’t get out of bed (and I recommend keeping a package of face wipes by your bed).

2. Post-Mates/GrubHub/Eat24

When you don’t have the energy to eat, thinking about even making food seems impossible. I used to rely on cereal and milk, and even though it is one of my favorite meals, it’s not going to cut it for every meal of the day. I suggest using a delivery service to order some real food. Order something with veggies and protein, to help replenish whatever energy you may have.

taking it one spoon at a time

 

3. Ask for Help

Either before a flare-up or during one, talk to a loved one about your condition. Explain how it makes everyday things seem impossible, and ask for help and support. When you have a flare-up, let that person know you’re struggling, and see if they can help you in any way – be it buying groceries or picking your kids up from school.

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Why I'm Determined to 'Bloom Where I'm Planted' – Chronic Illness and All


In the very beginning of my chronic illness symptom onset, I felt more hopeless than I had every felt before. I couldn’t imagine how life would ever resemble “normal.” I mourned the friends who pulled away, and I pushed those who remained as far away as possible. I was scared and miserable. Yet, somewhere amid all that despair, there was an inkling of encouragement. A mantra of sorts began to play within my thoughts, “I have to bloom where I’m planted.”

When that phrase still felt empty and pointless, I still said it. I looked at my days and asked, “Am I blooming yet?” When you go from being a bride and a teacher, a young person just beginning to see her life take shape, and suddenly you’re sick, no longer able to work, and feel like the least attractive human on earth – you lose sight of yourself. For many years, I defined myself by my career, and suddenly, it was gone. I was newly married, just beginning to think of myself as a wife, and suddenly every bodily function was on the fritz. It was far from my finest moment.

However, I had my mantra. I had the deep desire in my heart to bloom, even though planted in a less than desirable place. So, I tried. I look back today and realize that physically life is not any easier than it was at that time. In fact, my disorders have progressed in ways that both frighten and frustrate me. But, I no longer feel like I’m a person who should be pitied. I’m not ashamed of who I am – or what illness has made me.

Looking back, I know that there wasn’t a check list or a blog post that answered all my questions. I know that this blog won’t answer all the questions for someone newly diagnosed. However, I also believe there are changes in thinking and positive steps that I made that helped me reach a better place emotionally. Please, don’t think I’m saying a positive attitude will cure your disorder, it probably won’t. But, there are a few things that have made life less painful for me, and I’ll share them with you.

1. Don’t chase miracle cures.

I get it. If I had scientific evidence that eating MoonPies under a pine tree at midnight would help my condition, I would throw myself a MoonPie party under the trees tonight. But… that is ridiculous, so I probably won’t indulge in that particular “treatment” any time soon. Please, if you find an oil, a smoothie, a supplement, or a moon rock that helps alleviate your symptoms, use it to the fullest extent of its usefulness. But, keep in mind that products that are aimed at the chronically ill are often not all that helpful. I Googled, purchased, and lamented the ineffectiveness of so many herbs, supplements, magic drinks, and powders that it’s amazing I still had the money to go see an actual doctor. I’m not saying that there couldn’t possibly be a non-medical treatment that helps you, but I am saying that I went through a lot of disappointment trying to find the magic cure for me.

2. Don’t try to be strong or inspiring.

The people who inspire me the most in life are those who have truly gone through hard times and remained transparent about the struggle. I tried to have a positive outlook and smile through the pain, and it made me feel like a fraud. Instead, I’ve learned to be painfully honest about the days that blow like the wind. I’ve also learned that I can be honest about pain and struggles without being unkind or overly unpleasant. When I tried to be a superhero that never complained and always smiled, I was living a lie. It was hard on me, and it was especially hard on those closest to me who had to handle all of the “real” me when I was at my worst. By opening up through blogging and a social media platform about the reality of living with illness, I gave myself space to be true. What I learned is that most people aren’t looking for a superhero sick person. Most are happy with honesty – and maybe a few laughs along the way.

3. Don’t be afraid to accept a new normal.

At the onset of my most severe symptoms, I was devastated at the idea of losing the life I had built for myself. I desperately clung to my job, my independence, my mobility, and even the people in my life who were pulling away. I was so afraid that turning loose of my life as I knew it was the end of me. What I’ve learned is that life is a series of adapting to new normal. Yes, the new normal come more quickly when illness is factored into the equation. However, new normals aren’t always bad. I will always miss the old me, but, if I’m being honest, I’m sort of proud of how the current me is coming together.

Friends, it’s no secret that being sick is hard work. None of us chose this life. Ultimately, you can’t change where life has chosen to plant you, though, so you may as well do your best to bloom. Am I blooming yet? I’m not sure, but I’m positive that I’m trying.

Follow this journey at Crazy Chronic Life.

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Thinkstock Image By: artant

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