Cindy Belz.

What I Wish People Understood About Losing My Career Due to a Disability

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In 2003, Ehlers-Danlos syndrome took my career. Until then, I had an amazing job. I made a great income and I was so happy with what I did and what I planned to do. I did not know then what I know now, however.

When I had to walk into my boss’ office and finally tell him I could no longer work, I had been there almost 10 years. That was the hardest conversation I ever had to have. I fought with everything I had to be able to keep my job; I even dropped to half days in the office, then working from home, however it still wasn’t enough. In 2010 my company’s group insurance policy refused to cover me and basically said that if I was on their insurance next year then everyone in the company’s rates would go up, so at that point I could no longer be employed for medical reasons.

I feel thankful and blessed that I made it as long as I did and was able to accomplish what I was able to accomplish. I started out as office manager and ended as almost VP. I was very proud of myself. I had gone back to school, I only had a year left, and then bam, it was gone.

My bosses were amazing! They had been through so much with me — pregnancies, back surgeries, having to rush me to the emergency room a few times, taking me to the doctor when the pain was too bad to drive, and hospital admissions. They understood I was always sick because I had an awful immune system. At the end they even went out and brought me a $1200.00 gravity chair so I could lay back, but the pain was just too much to focus. I wasn’t even able to drive, so my husband would have to take me to work and drop me off. Then by 11 A.M. I was in so much pain from trying to sit that my boss would have to bring me home and help me get up the stairs to my house.

I am sharing this information because it’s very hurtful when people think those on disability just sit around all day and eat bonbons and enjoy themselves. I’ve had people say things to me like, “It must be nice to sit home all day,” or “I wish I could watch TV all day.” They have no idea the amount of pain, the symptoms I have to manage, the nausea, the headaches, the dizziness, almost fainting, joints popping in and out of place. Taking a shower feels like I’ve run a marathon. Even when I am laying here still, I am in so much pain that I feel like I want to cut my legs off. I have to take a ton of medications to even function. So no, it’s not fun. I would love to change it and I would love to work.

People don’t get when you lose your career, you lose much more than just a job. When your body takes it away from you, it’s one of the most frustrating things in the world. You may feel like you lose your independence, your self-worth, your ability to be a role model, your income, the ability to give your kids a good Christmas, and care for yourself financially and physically. People complain about things at work that I would do anything to deal with again. I would do anything to sit in traffic. I would do anything to have a business lunch. I would do anything to have a disagreement with a coworker, or sit in a cubicle, or sit through a meeting. I never even realized how lucky I was until it was gone.

When you see somebody on disability, please don’t call them lazy. Please don’t think they don’t want to work. Please don’t think they’re trying to somehow cheat the system, and please don’t make them feel worse. Trust me, there is probably nothing you can say to them that they have not already heard. A little bit of compassion goes a long way!

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The Tricky Crossroads of My Son's Ehlers-Danlos Syndrome and Sports

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My son Michael is an active, athletic 11-year-old who loves sports. He also happens to have Ehlers-Danlos syndrome hypermobility type. And it’s at the crossroads of sports and EDS where things get complicated.

Michael has experienced a handful of injuries playing sports – some serious (like a torn meniscus and ACL in a baseball game) and some not so interesting (like a finger sprain playing flag football). We are lucky enough to live close enough to New York City that Michael is cared for by some of the top orthopedists in the country at Hospital for Special Surgery. These doctors tell Michael to take precautions like wearing a knee brace while he plays sports, and they discourage sports like soccer and tackle football, where he’s more likely to re-tear his ACL. But they continue to encourage him to play the other sports he loves and to stay active.

For whatever reason, Michael has always gotten hurt more than the average kid. Some of these injuries we can likely attribute to the hyperflexible joints that result from EDS – he’s had sprained ankles, wrists and fingers. But other injuries… who knows? He once tripped over a branch and broke his fall by smacking his forehead on a tree. He’s been hit by pitches in baseball games multiple times. One pitch hit him on the elbow and on the back and left bruises in both spots. As far as I’m concerned, that defies the laws of physics and has nothing to do with any diagnosis Michael might have.

So, here’s where it gets complicated for me. Because Michael has always been somewhat injury prone, we can’t always tell what’s serious and what isn’t. Let’s face it – if  you’re a kid who has been through two knee surgeries, more than a year of physical therapy, months on crutches, and time with other body parts in splints and braces, you’re going to be worried that every injury is a bad one. And as Michael’s mom, I worry too.

Now, any time Michael gets hurt, our internal alarms all go off. And unfortunately, none of us can tell anymore whether or not it’s a false alarm – even Michael. In a recent basketball game, Michael tripped over an opponent and fell on his right arm. He got up, holding his arm; the coach took him out, and Michael spent the rest of the game on the bench. I resisted the urge to run over to see if he was okay, and waited a quarter before I went to take a closer look at him. He said he couldn’t move his arm, and I mentally began mapping out where we could head to get him checked out, while we waited for the end of the game.

By the time the game was over, Michael could move his arm a little, and by morning, it felt significantly better. Since then, he’s been playing basketball and living his life, but every now and then, he tells us his arm is bothering him. Is it just pain from overuse, typical for EDS patients? Or something more serious?

And for now, this is our life. As a mom, I spend more time than I wish I did worrying about the next injury and trying to figure out whether or not something is a false alarm. And I spend time trying to allay Michael’s fears that any injury he does get is going to be season-ending; as a 6th grader, he’s already had two of those injuries, so unfortunately, that’s not an unrealistic fear for him.

But in the meantime, we do our best to take the precautions we can to keep him safe, and just let him go out into the world to be a kid.

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The Power of Believing Yourself When You Have an Illness

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When I reflect on my 23 years of life – a life of working with healthcare staff to find a reason for the feelings of exhaustion and pain and other symptoms that cloud my earliest memories – a single word stands out strongly.

Belief.

I didn’t always feel believed by my teachers, by some doctors and nurses or even by myself at some points. I was ill, extremely ill, the weeks I spent in the hospital. I had disturbed levels in my blood and a mish-mash of long words that flew over my head as a 7-year-old. Yet we couldn’t put a finger on the cause, the reason why different systems in my body started malfunctioning. I felt disbelieved. My struggle was plain to see, but no label or comprehensive diagnosis could be “magicked” up, so it felt like there was often an unspoken question mark — a sense of disbelief at the speed and spread of so many different problems. From my digestive and hematological problems as a baby to severe bladder and kidney issues in my first years of school to respiratory difficulties, allergic reactions, feeling generally weak and tired all the time… Something was running riot through my body and refused to leave a calling card.

Sometimes I believed I could simply push through this mystery blockade by burning myself out attempting a solution, only to land back in bed again. Some symptoms I simply came to believe were “normal” for my clearly “unusual” body. Nobody else around me seemed to have them, but we didn’t really know why they were there, so I put up with them. As I got older I often fought between doubting myself and believing what I was experiencing. I felt a sense of anger and hopelessness at the prospect of this cycle continuing into the future.

In the past couple of years, thanks to the blessing that is advancements in medical research, I now have a clearer understanding of what I have and a better framework to comprehend a life of battling my illness in both the hospital and at home. Ehlers-Danlos syndrome (and the many linked syndromes and illnesses explaining my poor and widespread health) is still a long way from being recognized for how truly debilitating and dangerous it can be. But, knowing my challenger’s name means I can tackle it head on.

Ever since being diagnosed, some people have tried to push me back into disbelieving the truth about my health. Ill-informed professionals, a rare minority of others living with chronic illnesses who made judgments and spread unkindness and lies, family members who struggle to grasp the concept of an illness that is chronic and permanent… I’ve learned there will always be challenges to my self-belief. But I’ve also learned that with the unfailing love and support of my husband, close family, incredible friends and a wonderful team of professionals helping me to live as good a life as possible, I can finally say to the mirror, “I believe you,” and mean it. Ignorance may sting, but only briefly, because, like the delicate canvas of a garden in spring, I am learning to always keep nurturing and nourishing that belief in myself so it is ready to blossom when I need it the most in my journey. Self-belief is so powerful.

To anyone reading this who is currently undiagnosed, living with a condition that has no name or struggles with individuals and professionals disbelieving their journey: I believe you! I believe your truth and I believe with my whole heart that one day you will be able to give your body the belief, respect and kindness you fully deserve.

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To the Senators Who Voted Against the ACA, From a Chronically Ill Teen

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I am 15 years old, and I have five chronic illnesses. I could go into specifics on which illnesses and what symptoms they cause, but at this moment that does not matter. What matters right now is how they could affect my future and more importantly my access to health care.

Last night the Senate took a vote on the Affordable Care Act. Donald Trump has said that if the ACA is repealed, he does not support repealing the clause that allows those of us with preexisting conditions to remain insured. But just before 1:30 this morning, senators voted on an amendment that would have kept the pre-existing conditions clause intact even if the ACA is repealed, and they voted against it. No action has been taken yet on effectively repealing the ACA, and no further statements have been made on the issue, but I cannot help but freak out. I am an American, and I do not feel safe in my country at this moment.

For those of you who do not know, this clause states that those of us with pre-existing conditions, such as my Ehlers-Danlos syndrome, cannot be discriminated against for our conditions when applying for insurance. Sure, there will always be loopholes that insurance companies use, but for the past few years this bill has proven effective in keeping many Americans with disabilities, like myself, insured. Most of you reading this know that being uninsured would be a huge issue. It is a large cost, unhealthy, and very scary.

The thing about being chronically ill is that the value of insurance jumps from valuable to almost irreplaceable. My insurance is what allows me to go to physical therapy to keep my joints moving, rush to the ER when I am having a suspected stroke, and go to pain management when life gets out of hand. This is a privilege to have that many Americans take for granted, but I do not. I see how much my insurance affects my quality of life every day, and I see how much worse off I could be without it; unfortunately this scenario could become mine and many spoonies’ realities. We could become stuck contemplating every doctors appointment, ER visit, and physical therapy because without insurance these rates would be sky high. Who knows, this could not be repealed in the end, but in the moment I have right and reason to speak out.

To the senators who voted to against this last night, please hear me out. My insurance is everything and without this clause I can easily be denied this privilege. This law changes my life every day. It allows me to take medications that get me through my school day so that some day I can be a working citizen of the United States. I will not stop fighting if you repeal this bill, trust me my voice will not be silenced, but I urge you to reconsider your decision. Take a minute to listen to the voices of all the people with illnesses. Hear our struggles. Hear our success. Hear how this “simple” decision could make or break my life. Vote to keep the pre-existing illness clause. Vote to keep me alive.

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19 Things People Don't Realize You're Doing Because of Ehlers-Danlos Syndrome

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Few people besides those with Ehlers-Danlos syndrome realize how the condition can affect so many aspects of life. When people see you out shopping or at work, they may not realize you’re adjusting your body to prevent a dislocation or that you don’t eat certain foods because they’re difficult to digest.

We asked our Mighty readers with EDS to share the things they do that others don’t realize is because they have EDS. Living with EDS requires constantly working to prevent and manage pain and energy loss, and friends and family may not see everything you do just to get through a day.

Here’s what the community said:

1. “Cracking my joints. Most people think I am cracking them just because, but I am actually putting things back where they belong because the fully or partially dislocate.”

2. “I know a lot about different medical problems and people think it’s amazing and awesome that I know so much. But in reality the only reason I know so much is because I do so much research on EDS and its connected conditions. I don’t get a lot of help from doctors so I research myself.”

3. “Switching positions every few minutes, even when I’m sleeping. I know if I stay still without being aware of how I’m seating or standing there is a good chance I might dislocate a joint.”

4. “People don’t realize that because I have Ehlers-Danlos syndrome, I count steps because if I have a joint dislocate, I need to know how far it is for me to get back to a safe place. I can’t afford the pain caused by not being able to recover from a dislocation.”

5. “Standing with my knees bent. If I’m not careful, I hyperextend them and then I can’t walk for a day or two. Just being hyperaware of my posture in general. Hips, shoulders, feet… everything has to be as supported as I can manage. It is exhausting.”

6. “Walk slower or stay in a store longer because I don’t want to move and hurt more. I also sit on the couch a lot and just tell people I’m too tired to hang out when I’m really I a lot of pain and I don’t want to move.”

7. “Suddenly talking louder or stopping mid-sentence as I wait for the muscle pain or pain from a subluxation to stop — then stretching, maybe taking medication, and moving on in conversation as if nothing had happened.”

8. “I hate yawning. I have to consciously stop myself mid-yawn so my jaw doesn’t dislocate.”

9. “Because of Ehlers-Danlos syndrome I am very ‘clumsy’… That is my legacy… but people do not understand that my properioception is off, so I trip over flat objects, run into walls, poles, people etc.”

10. “I move constantly because sitting still hurts. People get so frustrated and ask me to sit still. I don’t even realize that I’m doing it. I’ve even been told by an elderly lady that I wasn’t possibly paying attention while fidgeting like that. Little do they all know that if I sit still for to long, my joints start to slip out of place, and the pain is unbearable.”

11. “Keeping disinfectant and Band Aids close by all summer because even my most comfortable shoes will eventually rub skin off. Not blisters, just straight to taking it off.”

12. “I have very long hypermobile toes. As a kid I was always last kid picked in gym class. But then one day I discovered I could use my toes like monkey toes to climb that big rope. I could climb straight to the top, let both hands go and wave at everyone, holding on with my long toes wrapped around that thick rope. Everyone thought it was so cool.”

13. “Using a hands-free leash for my service dog. A lot of people assume it’s because I don’t want to hold a leash all day (which is true, your fingers cramp), but if he stops to itch or something and I don’t realize it immediately, my fingers could dislocate if the leash pulls them the wrong way.”

14. “I wear Doc Marten boots almost exclusively not just for style. They provide plenty of room for orthotics and can be tied tightly around my ankles to prevent accidental rolling or hyperextention.”

15. “I won’t drink ice cold drinks. Most people think it’s just a weird thing, but in reality it’s because EDS has caused me to have dysmotility of the entire digestive tract and if I try to drink something very cold my esophagus spasms and I throw up, so it’s just easier to let them think I’m ‘weird’ than to explain.”

16. “Wearing short sleeves in the winter or long sleeves in the summer due to temperature disregulation.”

17. “I wear a corset, not for ‘waist training’ but for back support.”

18. “I make all my food from scratch since pre-prepared food usually has chemicals and allergens which irritate my stomach. I’ve also started making my own health/beauty products.”

19. “I carry a giant purse or backpack style bag. It’s not just my personal style – it’s so I can carry all of the medications and medical supplies I might need quick access to!”

What things do you do that people don’t realize is because of your Ehlers-Danlos syndrome? Share in the comments.

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8 Suggestions People Offered to ‘Fix’ My Chronic Illness

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I’m sure many people out there with a chronic illness have told by others how they can “fix” their condition by doing a certain thing. I can’t imagine being told this if my condition wasn’t an invisible illness!

Below is a list of suggestions I’ve tried over the past few years from friends, family work colleagues and even certain doctors while my condition has been worsening.

I think my main message is try to show that you know your body better than those people. We know how we normally feel, we know what’s wrong, we know our illness, we know our diagnosis and we know what we can do.

By telling us we can “fix it” or that “we’re not doing enough,” people are questioning our strength and condition. 

1. Acupuncture: Suggested by my doctor and work colleagues.

This is a funny one for me. The day of the acupuncture I felt dizzy and worn out and couldn’t do much of anything. The next day I felt pretty good — almost normal you might say. But the day after that, I was back to my normal, so going through the acupuncture process is relatively worthless for me.

2. Yoga: Suggested by friends.

This is another one I am not really sure about. When I have a flare, the idea of bending into all different positions and breathing a certain way seems ridiculous and quite dangerous! On my good days, I really enjoy yoga, but it’s definitely not a fix for me. I would like to tell anyone who tells me that yoga could cure my condition and pain to try and hold a headstand against a wall when your hips have been subluxing all day!

3. Positive thinking: Suggested by a lot of online help groups and friends.

I find this a tad offensive. During my day-to-day life, I’m as positive as I can be. I always see the best in situations. Through my flare-ups, I think I’m able to deal with a bad day a lot better than a “normal person.” But when I’m told positive thinking will cure my condition, I think about the diagnosis and tests that prove my body is not functioning properly. No matter how positive I am, I can’t stop my joints dislocating and subluxing. I can’t imagine these same people my near-sightedness will go away through positive thinking!

4. Squat more: Suggested by a physiotherapist.

A physiotherapist suggested my joints were popping out because I had no muscle. I was told to do 30 squats every hour to up my strength. I have a full-time job and other commitments, so this was unrealistic. And it caused a lot of pain — both emotionally and physically! I can look back and laugh, but when a professional tells you that you can cure yourself, you’re willing to try anything. I almost put myself in hospital trying to keep up with his squat suggestions!

5. A vegan diet: Suggested by an orthopedic surgeon.

I actually really enjoyed this one! Dairy and meat apparently can swell joints, so with a condition like mine, it does really help to stop the swelling any way I can. Within a week or so, I could feel the difference after not eating meat or dairy. Plus, I like all the different foods I have tried through this diet. Although it’s not a cure, it was a good piece of advice, and I will always be grateful.

6. Lose weight: Suggested by a doctor.

I was told my pain might have been due to the heavy weight I was putting on my joints. As with the other suggestions, that seems reasonable. I ate smaller portions and managed to lose a good amount of weight. But apart from having to buy a whole new wardrobe, I was still in pain. I feel I must look healthier, but my insides are still hurting and aching.

7. Walk around more: Suggested by co-workers and friends.

Maybe my joints are bad because I don’t move enough. This seemed like a fair point. If you don’t move, your joints might seize up. But when you’re having a flare, dizzy with pain and dislocating and subluxing, being told to walk around is the last thing you want to hear!

8. It’s in your head: Suggested by doctors.

This is the worst one. When I’m feeling particularly bad, I’ll go to the doctor’s office. If the doctor hasn’t read my notes, they’ll ask if I’m depressed or if there is anything in
my life that has upset me.

Two months ago, I was in so much pain I could barely walk. A doctor told me she thought it was in my head due to severe depression, and I believed her. But then I went to the pain clinic for my weekly appointment, and it turned out I had something out of place for days. A staffer there put it back in place was shocked my doctor hadn’t noticed it.

If you’re reading this feel judged, remember you’re strong just by getting through the day. After years of getting upset when people said they had Googled my condition and could “fix” me, I’m learning to say thank you and realize it’s because they care. I use the suggestion to start a conversation to raise awareness about Ehlers-Danlos syndrome. Unfortunately, my illness can’t be cured or “fixed.” 

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