Yvonne Evans-Nevin Shares How Ehlers Danlos Syndrome Affects Her Appearance

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Yvonne Evans-Nevin Cover

Yvonne Evans-Nevin considers herself a “photoshopper’s dream.” Evans-Nevin spent eight years on antidepressants after her chronic pain was misdiagnosed as depression. While she has lost most of the weight she gained while medicated, she still finds it hard to love her body.

“I try to love my body,” Evans-Nevin, a former journalist, and mother of two, said, “but it can be hard when you are constantly exposed to unrealistic body shapes on magazine covers.” Evans-Nevin has Ehlers-Danlos syndrome, a condition which she says makes her knees misshapen and her body appear bruised and “doughy.”

“My legs make me very self-conscious, as my knees are out of place and almost always look purple and swollen,” she said. “The veins on my legs are pretty visible too, and just, well, odd. I almost never wear anything that shows off my legs. My bruises also make me look as though someone has been kicking me.”

Because Evans-Nevin has issues with her knees and pelvis, she often uses on a wheelchair to get around. “It’s bad enough that I feel self conscious using the chair, but to have people stare is horrible,” she said. “A lot of people might see me out and about on a good day walking around unaided and then see me using my stick or chair. The general public does still very much not understand invisible disabilities.”

In the future, Evans-Nevin would love to open a modeling agency for people with disabilities. “Not even so much to make money,” she said, “but to show the world beauty comes in all shapes, sizes and ‘imperfections,’ and to make people feel good about themselves.”

Read More: This Is What It Looks Like When You Feature Disabled and Chronically Ill People in Magazines

Next: Gaylyn Henderson Is Gutless and Glamorous 

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Why Being a Medical Rarity Makes Me #ZebraStrong

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For those who know what Ehlers-Danlos syndrome (EDS) is, it’s become synonymous with the zebra. The zebra is our mascot. We wear zebra stripes and we tend to decorate our neck braces, walkers, or wheelchairs with them. What is with this seemingly random obsession, you ask? Well, we ourselves are medical zebras. It is a way we can identify ourselves without saying “I have EDS.”

Now, what the flying ferret is a medical zebra? Well, simply put, it is a name we’ve come up with for people whose diseases aren’t well-known, or rare.

Where does it come from? Well, for years medical professionals have been taught to rule out the most common causes of ailments first before moving on to more rare conditions. The reason for this is some standard symptoms of a common, treatable condition might also match up with those of a rarer, more severe or even incurable condition.

I think the standard person knows this all too well — just look up the symptoms of your common cold online with the help of Google and suddenly you’re “dying” from a dreadful and rare condition. More often than not, this quick keyboard diagnosis might not be 100 percent accurate. Diagnostics can be a difficult thing because there is a huge overlapping of symptoms from condition to condition.

In order to avoid leaping to extremes or jumping to conclusions while they navigate through these symptoms, doctors have been taught to go with the statistical norms. When working with a patient, they must first cross off all of the more common causes before making their way to the enigma that tends to be rare disease.

They use a metaphor to guide them: “When you hear hoofbeats, it’s most likely a horse and not a zebra.”

The problem with this approach is even though it helps the majority of patients, those with rare or under diagnosed conditions tend to fall
through the cracks. And those with Ehlers-Danlos syndrome definitely have. There are several types of EDS, some of which are extremely rare and just as dangerous, for example vascular-type, but the hypermobile-type is actually thought to be fairly common, just extremely underdiagnosed.

People with EDS usually search for their diagnosis for years and years. It took me nine years, and I’ve met people who had to wait more than thirty to finally figure out the name of the condition that completely changed their lives.

A zebra is so much different from a horse, so by the time people with EDS start to take off all of the horse masks that were added by (hopefully) well-intentioned doctors, we end up proud of our stripes. We finally know what we are. We finally have a name. We finally have a support group. We finally have our validation.

And it took way too long.

One of the biggest reasons for that? Lack of awareness. Many doctors do not even know what Ehlers-Danlos syndrome is. They have to ask us how to spell it and do a quick online search before they can even continue with their examination. My guess is the doctors who have to do this can’t help us much more than we ourselves can. Even the EDS experts are still pretty
baffled on how best to help us because it is a multi-system disorder and there is much research that needs to be done.

That’s another part of why people with EDS identify as medical zebras. We’re more than just black and white. Our collagen, the protein that acts as a major building block in our bodies, is affected, so our entire bodies have issues. Our symptoms and our disorder are so multi-faceted, it’s hard to find a box to place us in. We are all so different from one another, it is hard to figure out the best way to treat our symptoms.

We fall through the cracks of misdiagnosis or remain undiagnosed, with doctors saying, “Huh that’s weird but I have no clue what that is.” Or the way too standard, “We can’t find anything definitive that explains these symptoms, so this must be psychogenic or psychosomatic.”

Of course, constantly being told our illness is in our heads for years and years, while it’s actually in our bodies may lead to some mental health problems. We also pretty much never know when one of our joints will dislocate or when a particularly bad episode of dysautonomia, periodic paralysis or something else may hit, which could also lead us to develop anxiety.

What’s the biggest problem of being an under diagnosed zebra?

Because we wait for years and years to receive a diagnosis, our symptoms and condition progresses at a speed and in a manner that is actually avoidable with the proper intervention and care.

This is a degenerative, progressive, genetic disorder with no known cure, but that doesn’t mean we can’t slow down its progression. If we can set people up with the proper medications, with the best physiotherapy plan and get them the assistive devices that they need, we can keep them much healthier for far longer. We can prevent much of the muscle, joint, and even skeletal damage that is being caused. There are medical zebras with EDS in wheelchairs who probably wouldn’t have needed them if they got a diagnosis a decade earlier than they did.

So this is why we are #ZebraStrong.

We are #ZebraStrong because we are figuring out how to survive in bodies that struggle really hard just sitting – our muscles are constantly in overdrive trying to keep our bones in place.

We are #ZebraStrong because we make it through every day with lots of pain and little relief from pain medications.

We are #ZebraStrong because we’ve learned to navigate an extremely difficult healthcare system that isn’t exactly geared towards people like us.

We are #ZebraStrong because we’ve learned there’s strength in numbers and we can help other people like us live better, healthier lives.

Help us to be ZebraStronger! Talk to your doctor and ask if they’re aware of EDS. Send them to this website ehlers-danlos.com so they can start to get the information they need to help and diagnose people sooner. Look up what EDS is yourself. Talk to people you know who might be showing symptoms, and ask them if they’ve heard of it.

A group of zebras is called a dazzle, so please help us and other medical zebras. Let’s dazzle together!

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When I Asked Myself, ‘Do I Really Have These Symptoms?’

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A few months ago, a friend of mine came across a cool project called “The Videoblogs Film.” Its purpose is to squish the taboo and negativity surrounding mental illness and to encourage people to speak up. They promoted a video contest called “A Contest to Continue the Conversation.”

So I got in touch with a few friends, and we made a short entry. We chose to discuss an issue that can be way too common for chronic illness patients, especially those with rare or invisible illnesses, which is being told it’s all “in your head.”

I personally spent most of my life being told there was nothing wrong with me. Doctors pressured me to go back to school full time when I was a teen and told me I was being “dramatic.” After a while, it wore me down. It wore me down to the point that I asked myself, “Is this real? Do I really have these symptoms? Is it all actually in my head?”

I was 21 before I got the answer for most of my issues: Ehlers-Danlos syndrome. I was told I was fine for 10 years when I knew I wasn’t. Other people wait much longer, and some people may never get the validation of a diagnosis. And everyone needs to know their pain and challenges are valid.

Chronic illness patients, like myself, may also cope with depression and anxiety due to multiple reasons. The heartbreak of missing milestones with your peers or having to give up school or a career you love. Dealing with a body that is failing you and physical pain. The last thing you need if you’re dealing with anxiety or depression is to be told your chronic illness experience isn’t real because doctors haven’t figure it out yet.

Hold on. Have faith. Keep going. What is happening to you is completely real. Keep fighting.

Our video was selected as a finalist for the contest, and while we didn’t win, we still had a great opportunity to make a short three-minute film that you can watch below. We’ve been inspired to continue making these types of films to address all the various parts of chronic illness.

 

Lead photo source: Thinkstock Images

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5 Things I'd Like Others to Remember About My Life With Rare Disease

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It took 30 years before I was diagnosed with the rare, chronic illnesses of Ehlers-Danlos syndrome, type 2 and 3, postural orthostatic tachycardia syndrome (POTS) and Marfan’s syndrome (atypical).

It affects every part of me.

Before that day, I was completely alone in dealing with my body. My constant injuries and frequent illnesses were called “attention seeking” by family, doctors and my school. I was smacked for needing hospital. Finally, I was told (in these unforgettable words), “You are a first generation genetic mutant.” I laughed hard because their abnormal was my normal, whatever the label. What they meant was I have two rare un-inherited genetic conditions, almost never seen together before by national specialists. Both occur in any race or ethnic group.

Every day I hurt.

The pain is frightening because it’s so severe, endless and random. Sometimes I panic and desperately wish for painkillers that don’t exist yet. “Pain reducers” are all there is.

My joints dislocate, so I wake up and my jaw is stuck.

Enjoying a fairground ride knocked one of my kidneys out of place.

Filing papers at work dislocates my fingers.

My body won’t learn dancing or running, so I don’t always fit in.

My skin splits open for no reason and won’t heal.

I break bones so easily, treading on my foot puts me in plaster for months.

Catching infections badly means I often miss out on great plans.

Standing to queue in shops makes my heart hammer.

My blood pressure falls and I often pass out in public.

My red cells are malformed, so I’m short of oxygen.

Sometimes I cry, and there is nothing wrong with that. This is just a small sample of my ordinary life. I’d like you to know these five things, to help myself and others with rare and chronic conditions overcome life’s daily barriers:

1. Please don’t remind me of what my body won’t do. I’ve had two fantastic careers, travelled, and taken part in some awesome active challenges. I get ill or injured just lying in bed, so why restrict myself? I chose to minimize any risks and join in if I want to. Guarding or worrying about me burdens me. It helps me if you remember that I don’t think I’m ill, disabled, defective, different or suffering terribly even now (unless it’s from your intolerance, arrogance or unkindness). This is the only body I’ve ever known.

2. Before diagnosis, my medical notes said “attention seeker.” Now I’m deteriorating and not working, they say “poorly adjusted to diagnoses.” If you’re a doctor, please know that I have to put my positive abilities and optimism before your negative opinions and predictions, particularly when you can’t show me your crystal ball! I might improve again. How can you know I won’t?

3. Please don’t make personal remarks without thinking. I’ve never shared this before, but was told after a miscarriage that any children I might have were likely to die. Naturally, choosing to avoid this unimaginable agony means I must regularly throw out natural thoughts comparing myself to others. I have to ignore those who tell me I’m “selfish” or make insensitive comments. Mostly, I focus on enjoying what I do have as much as possible.

4. I never mind questions about my health, but please resist finding and showing me articles on “people like me.” I already know firsthand!

5. Finally, I have learned your attempts to help are always best taken as they are meant, and not as wrong, clumsy or proof you can’t know how I feel. We are all human.I always appreciate kindness. I choose to believe that we have far more in common than separates us.

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Anna at camp looking over the water

Why I'm Grateful Paul Newman Created the Hole in the Wall Gang Camp

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Anna at camp looking over the water
The Hole in the Wall Camp.

I belt show tunes at the top of my lungs as we drive along a long, winding, wooded road. There is excitement in the air and joy in my heart, and I know I am about to have the best week of my life. I’m headed to a magical place where sadness is trumped by love and “no” is a word sparingly used.

I’m going to camp.

Now this camp is no ordinary summer camp. The story of the camp is not ordinary. The staff is not ordinary. The counselors are not ordinary. The campers are not ordinary. The magic at camp is not ordinary. Every single person and aspect of the Hole In The Wall Gang Camp is extraordinary.

At this camp, I’m also a singer, ukulele player, artist, writer and possibly the biggest “Hamilton” fan you will ever meet. I’m also living with Ehlers-Danlos syndrome (EDS) and many of its comorbidities. The list of medicine, infusions and various medical care I need on a daily basis is long enough to intimidate most experienced doctors and nurses. And for that reason, it’s difficult to attend most ordinary camps, which is why I’m a part of the Hole in the Wall Gang Camp.

In 1996, Paul Newman, the world famous actor, race car driver and all around incredible person, had a simple yet transformative idea. He envisioned a place where every child, regardless of their medical conditions, could have the experience of going to camp. He wanted every child to be able to let loose, meet other kids like them and raise a little hell. In 1998, after two years of hard work, imagination and determination, this camp was born. And the rest is history.

Fast forward 18 years. It’s June 17th, 2016, 10:05 a.m. Our white van, filled to the brim with boxes of life sustaining equipment (and my ukulele, I can’t forget my ukulele), makes a sharp left turn off of a long wooded road. The only thing marking this important turn is the carved wooden sign stretched between the trees. We pull in, crossing the dirt dam at the edge of the lake, and I know I am home.

Familiar faces greet us with lit smiles and wide eyes that hold more than words can accommodate. “We’ve got a camper.” And with the affirmative “Bring ‘em down” on the walkie talkie, we drive to admin. More faces greet us at the administration building. Hugs and smiles and more hugs are followed by helping hands ready to carry my bags. There are three categories for where my bags need to go.

1. The cabin where I sleep. This is my blue duffel bag, one backpack and a pillow.

2. The infirmary. This includes three large cardboard insulated boxes filled with seven days worth of life sustaining IV bags, and one more gigantic cardboard box for all of my supplies and medications. (Otherwise known as the things taking up all the space in our van. But it’s vital to me being alive, so I guess it’s fine.)

3. Stays with me. This third section contains two things. The bag I’m attached to currently keeping me alive, and my ukulele. Like I said, I can’t forget my ukulele.

As we walk into the infirmary, the paint on the mural surrounding me depicts the magic that happens at camp.

And the people around me? Well, they are the magic.

We get settled and organize my things with my nurses. I’m in the red unit this year. As my mom and I go through each medicine and procedure I need while I’m at camp, I’m surrounded by more red trinkets and decorations than I’ve ever seen in my life. Well actually that’s a lie, I got to look at equally as many green things in the green unit’s room last summer. But you get the point.

I meet with this summer’s dietitian. (Only the cool camps have dietitians, am I right?) We go over my oral diet: If it can drain out of the tiny plastic tube in my stomach, I can eat it. If it can’t? Nope. My diet this week (and every other week) consists of chocolate frosting, mashed potatoes drowned in gravy, water, hard candy, popsicles, chocolate milk, juice and frozen Gatorade. Yum. The wind blows in my hair as we ride away from the infirmary and to cabin circle in a golf cart. There is no need for wheelchairs at camp when we have golf carts that can seat a whole cabin of campers.

Blue, yellow, red, purple, green. Each unit is tucked into a nook of trees. They contain three cabins, each cabin with eight campers and five counselors. These cabins hold so much more than people. They hold friendship. They hold laughter. They hold tears, and the most precious memories of countless campers and counselors alike. Most importantly, they hold the feeling of inclusiveness and love that you feel knowing you are surrounded by people who understand you.

Camp is the only place I know besides the hospital where you are surrounded by people who don’t think it’s weird to have the long, protruding line up your neck where your central line is, or to have to take handfuls of meds multiple times a day. Need to eat through a tube in your stomach or your heart? No biggie. Because each and every camper knows their life is a precious gift that has to be fought for. We all know our lives cannot be taken for granted and often do not go the way we planned, but are still amazing and beautiful.

Many of the counselors and staff know this to be true as well. Some of my favorite people at camp are the camper turned counselors, and this summer I got to meet the first camper turned nurse. Seeing people like you be a part of camp their whole life is a feeling you can only understand at camp. You see people like you thrive and not just survive.

In the center of it all at camp, there is a flagpole that proudly flies the camp flag. At the first night of each session, camp has a unit fire drill contest that ends with raising the flag. As it is raised, we sing one of my favorite camp songs that shows the understanding and connection each camper, counselor, and every single member of the Hole in the Wall Gang Camp has:

“This joy that I have,
the world didn’t give it to me.
The world didn’t give it,
the world can’t take it away.”

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5 Things Chronically Ill People Would Love to Hear

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As a person with a rare chronic illness, there are times when I feel like I’m living apart from most other people in my life. Even my close friends, family, and co-workers are living day-to-day lives so different from mine. But then I remember, all of our lives are different.

There have been many times when someone manages just the right words to bridge the divide and every time it happens, it touches my heart! If you’re living on either side of that divide — as a person with a chronic illness or as someone who loves them — you’ve probably had the same experience.

Here are a few of my favorites:

1. “How are you…really?” Many people dealing with pain and illness on a chronic basis have learned to put on a mask of “fine-ness.” They say they’re fine or feel fine even when they don’t. We don’t mean to be dishonest, though. For me, it just means, “I’m hanging in there! Things are OK.”

But sometimes I just like to have an acknowledgement that I don’t look quite right or something seems off. One friend says she can see it in my eyes. Another can tell when I walk more gingerly or search for words. I don’t need them to question me every day, but I do appreciate it when they notice a bad day and care enough to ask.

2. “I looked up Ehlers-Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS) (or name your illness here) and I read about it.” The first time a friend said this to me, I was speechless! It never occurred to me anyone would take the time to look deeper into my disability. When someone says they care enough about my life to research my illness, I know they can see me as a whole person and they want to understand. A variation of this one was a time when I read an article on Pinterest about things to say to a friend with a chronic illness. I sent it to an empathetic friend to show her how much she had mastered all ten suggestions. When she replied she’d read the article months before and so she’d sort of “cheated,” I couldn’t have been more grateful. She had gone to the trouble of looking for my point of view.

3. The next one was a stunner. During a recent phone call with my brother, I was talking about a dislocation. His reaction? “What does that feel like?” It was tough to describe, but I tried! What a great question! All of a sudden it was clear to me how much he cared about me and about my experience with this specific pain. He’d gone beyond the idea of chronic illness and just reached in to understand how it actually felt to be inside this body. I made up my mind to try to remember to do that for other people, too.

4. Another personal favorite is being told to “Just do as much as you can.” In other words, your contribution matters, but it’s up to you to decide how you want to join. It’s hard to be told you don’t have to bring food to the potluck or clean up after the picnic, but it’s great to be given the freedom to determine how to be involved. I hear this all the time from a friend who happens to be my boss. When it’s a tough day or I feel like I’m not functioning at 100 percent, I can get really impatient with myself. She reminds me my best on that day is enough. That is a priceless gift.

5. Finally, from my experience, there are times when the best thing to say is nothing at all. There is a time for silence. Maybe I’d like to try to lift a bag of groceries you might think is too heavy. If it is, I’ll put it down or ask for help.

But if you tell me not to do it, you’re missing a try for independence I might really need. Friends will often offer to help, but sometimes I like to say no. It reminds me I’m capable.

Another time when I appreciate silence is if I’m having a hard time selecting the right words. The gift of silence allows me to find the words I want and to make my point in my own time. When a friend does that for me, I know my opinion matters to them. They think what I have to say is worth the wait!

Each of these conversations — and a hundred others — mean the world to me.

They give others a way to connect with me as an individual with value, opinions and a unique set of obstacles. It’s probably true that many people in my life have no idea how my rare chronic illness affects my days. I know there are people with whom I interact who have no idea about my EDS or POTS —and that makes me happy. Not everyone needs to know — just as I don’t know about the personal lives of everyone I meet. But I will work to be more like my friends who have had the wisdom to communicate these ideas and so many other empathetic thoughts. I, too, want to ask and say the things that will let them know I want to understand them better, too.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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