Young woman lying on bed using laptop computer, in student dorm.

My Search for Acceptance as a College Student With Ehlers-Danlos Syndrome

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I have Ehlers-Danlos syndrome. My parents thought it would be good for me to live on campus my freshman year, to gain that college experience. And for the most part, I agreed with them. My biggest concern was either finding a roommate who would understand my situation, or not having a roommate at all. My problem was that my university was very persistent about me needing to have a roommate. I wasn’t in a wheelchair, so they thought I must be able to live with someone just fine. They were wrong.

I don’t blame my roommate for the problems that arose. I wouldn’t necessarily wish living with someone with my condition on those who aren’t loved ones and voluntarily choose to do so. But there are days when I need 12 hours of sleep. I was never given that. There were days when I couldn’t stand loud noises, but she had to dry her hair. And there were days when all lights bothered me, but she needed lights on to see and do homework. You can’t always get needs met when you live in a 15 by 20 foot room with another person. We lasted one semester until it was proven that having my own room was best for my health.

Even putting the roommate situation aside, campus living was hard. There were days I could barely walk 10 feet, but needed to walk half a mile to get to class or to even get food. So many “friends” would call me lazy for driving from my dorm to the academic buildings. They just didn’t understand why. The few friends I made at freshman orientation started to dwindle because I never wanted to go out.

“Going out” consisted of going to the apartments to drink and party until 4 o’clock in the morning. Even if I wanted to go and not drink, I couldn’t; the smell of alcohol makes me nauseous. And the more opportunities I missed out on, the less people continued to try to include me. I was at a point where if I wanted to get lunch with my group of friends, I had to invite myself along.

There are some upsides, though. I found one friend who completely understood. She was happily content to just sit and watch TV with me on a Friday night. She loved that I went to bed at 8 p.m. because it gave her an excuse to also. It took me a long time to find her. She was the first person who entered my life post-diagnosis I finally felt accepted by. She gave me hope that people will understand and still love you for who you are, even if they have only known you a short time.

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A Day With Ehlers-Danlos Syndrome

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I recently started my 5th or 6th round of physical therapy in an attempt to manage my Ehlers-Danlos syndrome (EDS). My therapist is very knowledgable about the condition, and he often talks to me with real-life and human perspective as he pushes and pulls on me during the manual manipulation portion of my treatment. This past Wednesday, he said something that just rung so true for me, “Em, you’re just made with some extra rubber.” He said it sarcastically because it’s not a perfect metaphor, but it got me thinking about my average day as a person made with extra rubber.

It’s 6:00 A.M. The alarm on my iPhone quietly sings, and milliseconds later my wrist starts to buzz from the second alarm I have set on my Fitbit. I turn off the Fitbit, and hit the snooze button on my phone. I’m not ready to get out of bed – I never am. It’s not because I didn’t get enough sleep the night before, rather I need to do a quick body assessment. “What hurts?” I ask myself. Today, it’s my knees, right ankle, and right elbow. I give by body a baby stretch and sit up. My snoozing alarm has 3:30 minutes left. I turn it off and start moving to get out of bed.

Click-pop click-pop. The sound that echos through my pitch black bedroom as I slowly swing each leg over the side of my bed. It’s my hips. It didn’t hurt, I’m safe. My knees make that same hollow noise as I press my feet into the carpet. That hurt, I need my brace. I shuffle across my dark room, avoiding turning on lights to let my husband get 50 more minutes of zzz’s. I find my knee brace. It goes on under my pre-picked jeans so none of the ladies I work with ask questions. I finish getting dressed in the outfit I’ve laid out the night before and head to the bathroom, the clock reads 6:10 A.M.

I think to myself, “You have 14 minutes,” the amount of time until I absolutely have to be out of the door. The 24 minutes I give myself each morning to get ready to ensure I’m not exhausted by the time I get to work. I stand in front of the mirror. My hair is a mess. I brush it and it still looks terrible, so ponytail it is. I can’t bare to hold my arm up to bother with a straightener. The two minutes I take to brush my teeth seems like an eternity.

I’m finally done. I brave the steps downstairs and hook the dog up on his lead. It’s cold in the garage. I need to start my car. I have 8 minutes. I walk out front and let the freezing Pennsylvania air hit my coatless and shoeless body. For 30 seconds I feel like a million bucks, any longer and it would start to be painful. I come back in the house and start my makeup. I quickly swipe foundation and blush across my face, and add the tiniest amount of eyeliner. When I’m exhausted at 1:00pm and my eyes start to burn, anything more wouldn’t be pretty. 5 minutes. I bring the dog back in. He races back upstairs to join my husband in bed. I slowly climb the steps like I’m climbing Mount Everest. That handrail is my best friend. I shut my two love bugs in the bedroom and head back downstairs to put my shoes on.

Sneakers. It’s always sneakers. Not just because I walk a lot at work, but because I need the stability. 2 minutes. I put my office keys in my pants pocket, put my coat on, check to make sure my elbow sleeve is in my purse, grab my coffee that I set to perk the night before and head to my car.

It’s 6:24 A.M. I move my seat to make sure my leg comfortably will move from petal to petal with my knee brace on. I hit preset station number five, The Preston and Steve Morning Show, and I pull out of my drive way for my 11 minute commute to work.

It’s 6:35 A.M. I walk into my building and head straight to my office. I can’t clock in until 6:45 A.M., but I need to be able to sit before my staff start arriving at 6:50 A.M. I log in to my computer, check my email and grab the weeks schedule all while standing – don’t want to trick my body into thinking it’s getting a break. I change the assignment sheet as needed and check the toiletry supply in my office – still standing. I can finally clock in and sit down for at least 5 minutes.

My staff start trickling in. They need wipes, pull ups and laundry detergent. My right leg follows the rest of my body around the building for 6,000 steps simply because it has no other choice. The pain is numbing and I feel like I am falling apart at the seams. I won’t sit down again until the last of my ladies gets on the bus around 9:30 A.M.

The next three hours is paper-pushing and computer work. I find solace for my body. Reenergized for the second half of my day, I barely make it to 3:00 P.M. I clock out, and go home.

As soon as I can get the dog back inside I’m laying down on the couch. Before I can even get a pillow under my knees I’m asleep. The next sound I hear is my husband walking through the door at 6:00 P.M. I’m groggy and I’ve lost 2.5 hours, but my body needed the rest. My physical therapist tells me that until I’m strong enough my body is using twice as much energy to do everything. It is in this moment that I believe him.

My husband makes dinner because he’s a saint. Maybe I’ll have the energy to do it tomorrow. Who knows?

It’s 8:00pm. I tell my husband that I’m going to take a shower. He says, “Goodnight!” because he knows that it’s my way of telling him I’m exhausted and I won’t be back downstairs. I climb Everest and take a quick shower – too long in there and I’ll feel like I’m becoming a puddle. I slide into pajamas and settle into my jersey cotton sheets. It’s a relief on every joint. Euphoric enough that I’m not even thinking about doing it all over again the next day.

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When My GP's Office Told Me, 'You're Costing Us a Lot of Money'

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After finally having a referral sent to the Royal National Orthopaedic Hospital in Stanmore to see their specialist Ehlers-Danlos syndrome team, I have come up against yet another wall.

Stanmore is one of the top places in the country for patients with Ehlers-Danlos syndrome. They have a team full of specialists who unusually know about and manage those with EDS. Their books have been closed for years, and finally the doors have been opened for new patients, all of us in dire need of a team that understand and cater to our needs.

Last year, after six months of pushing and a formal complaint, I had a referral sent through at the request of my cardiologist. Unfortunately as my GP surgery had refused to send the referral, by the time it was sent out they, too, had books too full to take new patients. I knew there was a reason behind my referrals not being sent out, but at the time the GP appeared to be doing this out of complacency rather then anything else.

This week I called up Stanmore to find out the status of my referral when they told me it now has to come from a local rheumatologist rather then the surgery. I knew this could be an issue, but wasn’t quite expecting to hear the reasons behind this.

I called up the surgery and explained my situation. The reaction was a flat-out no to a local referral, followed swiftly with an angry, “You’re costing us a lot of money.”

Yes, that’s right — never mind the fact that I am a patient with the same rights for help as any other chronically ill person on their books — this entire continual struggle is fueled by the surgery having me down as either a patient not worthy of help, or a patient who is too costly to bother with.

This type of comment seems totally unacceptable to me. Regardless of the cost behind treatment and referrals, it is not a comment to fling at a patient who is sick. Within the EDS community it seems this is not an uncommon thing.

This illness that effects our every moment has a hugely detrimental effect on us. It can steal away our ability to move about safely, it causes great pain and often leads to a point where we are physically unable to work. It can steal our ability to eat normally, to sleep normally, to function socially or function at all. It can cause heart problems, urinary problems, swallowing problems and severe fatigue. It causes so many issues that many of us become depressed and anxious. It can effect our lives so much that we literally can not function, and without treatment these effects are lifelong.

We may not be dying, but living with EDS that is not being managed intrudes our lives. It can feel like every shred of our being is slowly stripped away — and all of this without the support of the medical profession. Why is it that this is OK? Money should not come into this when a person’s life could be totally turned around with the right input.

I am exhausted from fighting the system. I have bitten the bullet in the past and gone privately for help, but unfortunately living on benefits doesn’t leave you with a lot to spare, and Stanmore won’t accept a private referral for their services anyhow. I do not need this continual fight on my hands when I am already sick, in pain and exhausted, yet I have no option but to carry on pushing hard if I want this referral badly enough, and I do. I want the chance to function again, to live again and to work again. I want the opportunity to learn how to self-manage effectively and understand how to cope with my illness. I want a life. This is all very difficult to remember when you are continually written off by those who should be supporting your needs. It is a very damaging way to treat a patient, and really does beg the question: Why am I so unworthy?

I feel lucky that I am mentally stronger than ever before. I can just about cope with this – it is healthily getting turned into anger rather then self-hatred, but two years ago this would have had me on my knees and added fuel to the fire of depression, anxiety and PTSD. It scares me that there are so many others out there dealing with the same comments who may not cope with them so well.

It is not acceptable.

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When I Was Challenged to Share How I Really Feel About My Ehlers-Danlos Syndrome

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One week ago, a writer asked me if I was able to pack my feelings about my disabling condition in only 200 words. My emotions about how it feels to be young and chronically ill, irrationally and without any facts, without thinking about how I might present myself to the public.

Me? Appearing weak? Was I able to lift the curtain and talk about irrational fears? Could I risk making myself this vulnerable?

It is very hard to provide access to one’s deepest inner world, to point out every wound of the soul, if you already got hurt. Well, usually I like challenges. What I do not like are emotions. Especially those that I have been carrying around as a burden for years and only partially digested because they hurt too bad.

But maybe, this is exactly the right moment. Maybe right now, here, it is the time to talk about it.

So how do I feel, right now, as a 30-year-old Ehlers-Danlos patient?

It is not only this one feeling I have, it is more of a combination, sometimes even contradictory emotions at the same time.

I am…

…happy

Happy about…

…finally being diagnosed

…knowing the enemy

…getting support from completely different people

…recognizing who is a friend

…being able to appreciate the small things in life

…being alive

…discovering new talents

…being able to accept new challenges

…afraid

There is the fear…

…about the future and what might happen next

…about losing even more people in my life

…of dying

…that I will not be able to find coping strategies for the rest of my life

…relieved

Relieved…

…from the burden not to know what has been torturing my body for years, what made me this sick

…because I know, I do not have to prove that I am sick anymore

…desperate

Desperate…

… about standing in front of another downhill episode and not to know how I will overcome it this time

…when doctors do not want or cannot help

…if a new problem arises but there are still ten unsolved ones

…that I never know if my condition will get a little better again or if this rainy season will last forever

…impressed

Impressed…

…by my strength

…that I learned how to survive and fight

…that I can be happy, even with my limitations

…disappointed

Disappointed…

…about my weaknesses

…that I am crying again

…about my inadequate performance

…about being a disappointment to other people – because of absence, being not there for them

…about the bad friend I seem to be sometimes

…thankful 

Thankful for…

…new ways that opened up

…new friendships

…love, relationship, family

…the things I am still able to do

…the help I got and will get

…the possibilities I still have despite illness

…sad

Sad…

…about the decision that I will not have children

…about not being able to work a regular job

…that I always have to find a new sense in life

…that my past and healthy me missed so many chances without even knowing

…about how many moments I did not appreciate; how much great things I got without deserving

…about everything I lost because of EDS

…about the ignorance I sometimes experience

…free

Free…

…from the pressure that I always have to be the best, the fastest…

…from being fully competitive

…angry

Angry…

…about all the bad things that had to happen to me

…that despite having a diagnosis some people doubt it and call me lazy

…because it does not stop, there are and will always be new problems

…inspired

Inspired…

…to write about my life

…by others, to master my life and strengthened to stay on this path

…envious

Envious of…

…people who are healthy and do not appreciate it. People, like I was in the past, that go carelessly through their lives without expecting any consequences

…patients that are able to get the medical help I would need

Ashamed of myself for having such ugly thoughts sometimes

…dissatisfied 

Dissatisfied with how my life might be tomorrow

…satisfied

Satisfied with how my life is today.

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To the Chronically Ill Mommas Who Worry That They Aren't Enough

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To the chronic illness mommas out there,

I see you. I know the struggle. I get it.

Please know you are loved, you are doing your best and you are raising your babies your own way.

I read on chronic illness boards all the time about the heartbreak mommas face when they feel as though they aren’t enough for their babies. They aren’t taking their kids to every event, every practice, they aren’t doing all the Pinterest projects and crafts, they aren’t making the exciting healthy meals. The vacations they can’t take because they have to spend that money on their own care. The events they can’t partake in because they are sick. Because chronic illness mommas are surviving. They are taking care of themselves while taking care of their children.

So next time you are worried about what your child is missing out on, think about what they are gaining:

Tenacity. We fight daily. To stay alive. To be our own health care advocates. We fight against disability stigma and our children see us fighting and will grow up knowing their mommy fought for herself as much as for them.

Compassion. Your child will be compassionate to others. Yours might be the one who sits with a sick friend later in life, brings soup to a sick coworker, opens doors for those on crutches. You are showing your child that humanity takes compassion and love and they will learn that from you.

Acceptance. My daughter has a friend at school who has a feeding tube. My son has friends with allergies. My kids accept these differences because I’m different. They are being brought up to know that we all aren’t perfect healthy beings and that’s OK.

Education. Having a rare chronic illness means explaining how and why I am on crutches when I see my kids at school. It means explaining to others why I have a disability placard when I “don’t look sick.” My kids see my patience with others education them on why I am the way I am. My daughter even shared Ehlers-Danlos Syndrome Awareness Week with her class last year and did a presentation on my illness. She is helping to teach the next generation and she’s 10.

Patience. Mommy is often slow. Mommy often needs help doing things. This means patience from the kids. They don’t even realize they are doing it but they are so helpful and mindful of what Mommy needs; it’s already there in their hearts.

Respect. For parenting, for adulting. My children see me on good days and on bad and they know I do what I can when I can. And for that they respect me. They know how much it takes out of me when I do what I do. They know how much of of a toll it places on my husband when he has to pick up the slack. That kind of respect we show each other will rub off on them and they’ll know later in life how hard it must have been when they feel sick and can’t do it all.

What matters. My kids know I love them. I do what I can when I can. They see me in wheelchairs and in the bathtub and sleeping on the couch. But they see me push through pain. They see me there when they need me. I may be in pajamas picking them up from school but I’m there! They can’t vocalize it yet, but they will know later in life that being there, being loved is what mattered. Not the fancy Valentine’s Day crafts for school but the showing up and not forgetting to say I love you and give hugs every day. That is what matters.

Love. They will look back in 20 years and tell someone, “My mom was sick but she loved me fiercely. She did what she could when she could.” That kind of love can’t be bought or taught, its shown through our actions. By letting your child know you love them and you are there for them even if you can’t do it all for them, they will grow up knowing they were loved, more than anything in the world. And isn’t that all that counts?

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How My Husband Keeps Me Fighting Through Ehlers-Danlos Syndrome

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I met my husband in a nightclub when I was 20. We both loved to go to clubs and dance all night. I fell in love with him on a dance floor. I remember looking into his dazzling green eyes and just knowing. We moved too well together. We felt something in the music on the dance floor. We danced at clubs for years. We danced at our wedding. We danced at all of our friends’ weddings. We danced with our kids in the kitchen of our home. I’ve never had to beg him to dance with me. He enjoyed it as much as I did. We were that couple. We promised to dance together always and forever.

Yesterday my husband installed an angled grab bar in our powder room of the master bathroom. I’m 37 years old.

You see, when we met we knew I was flexible. It helped make me a better dancer. I loved to dance. I could move my body to the music in ways my friends couldn’t. I just felt music. I also thought I was clumsy. I was always pulling things, moving joints weirdly. But we found out 13 years into our marriage that my flexibility was a bigger issue. I have Ehlers-Danlos syndrome, type 3. I’m hypermobile.

At first it wasn’t a big deal. Right before we moved in together I twisted my knee. No one believed me when I said it just twisted and popped. We were out for my husband’s birthday with friends and I twisted it getting out of a car-racing video game. It didn’t make sense. I was walking around in pain and no one could believe I had done so much damage so easily. My doctor put me on crutches and thought I was covering up a car accident. I remember going to the orthopedist and being told that my injury was that of a professional NFL player – my kneecap had moved and twisted and I had torn my meniscus in a way that only made sense if I had been playing a sport or I had been in a horrible car accident. I was useless during our move-in day. I directed people from a chair while on crutches. He stayed. He set up our entire new apartment. He even asked me to marry him shortly there after. I ultimately had three surgeries on that knee.

Before we were married I was having all over pain and overall health issues. No one could find the source. My doctor at the time thought I was in an abusive relationship. He wanted me to go to therapy. He put me on anti-depressants. He didn’t believe me when I said I just hurt. My then-fiance stayed. He stuck with me. He did the cooking and the laundry, the cleaning and took a job he hated to better support us living together.

I went off the meds and planned our wedding. It was one of the most magical days of our lives. We danced a lot that day. We danced so much I could barely walk. I still remember one of my favorite moments was him helping me take the pins out of my hair and rubbing my feet. What should have been our honeymoon was spent with me in pain. But he stayed. He ran me baths and cooked and took care of me.

Three years later I had pain in my abdomen. No one could figure it out. My doctor was sure it was my appendix and sent me to the ER. The ER doctor said it wasn’t my appendix but admitted me so they could find the cause of the pain. The doctors in the hospital fought, in my room, in front of me, about what the cause was. The abdominal specialist was sure it was gynological in nature. The gynocologist was sure it was in my intestinal tract. I was sent home a day later and sent to specialists. The doctors did laproscopic abdominal surgery and took my appendix out, inspected my reproductive organs and ultimately found a blockage in my instestinal tract. He said this kind of thing usually happens in old ladies who drink too much orange juice. I hate orange juice. This wouldn’t be the last time a doctor compared me to an old lady. But my husband stayed. He admistered my meds, he helped me shower, he drove me to follow up appointments.

Two kids, a move across the country and I was still having issues. Always had a virus or a cold. Always rundown tired. Always struggling with some kind of injury. My shoulder gave out. Then my wrist. Then my hip. I was finally given a diagnosis of Ehlers-Danlos syndrome and things added up.

Since then we’ve made some lifestyle changes. He’s pushed me in wheelchairs when I’ve been injured or on family trips when he knows I want to be there but I can’t walk that much all day. He’s fetched pain meds and fuzzy socks when I just can’t get comfortable. He’s slept in the other room on nights when I finally have all the pillows comfortable around me and my subluxed hip and he knows moving to accommodate him in bed would hurt. He’s worked from home when I’m having a flare and he’s dealt with the kids when I’m just done for the day. He’s let me adopt a dog that he has to clean up after because she assists me with things and will be my service dog.

Yesterday he installed a grab bar in our master bathroom so I could get off the toilet by myself. Most days I can do it but some days, and especially some nights, my hips, back or knees just won’t allow me to move by myself. My body is fighting against me now. One day last week I was home alone and stuck. I couldn’t get myself off the toilet so I knew it was time we did this. And yet, it feels too soon. I want to be the young mom who runs around with her kids and dances with them in the living room. I never could have imagined when I met him on the dance floor so many years ago that at the young age of 37 he’d be installing a grab bar on a Saturday afternoon so I can lift myself up.

But here is my truth: We may not dance the way we used to, we may not move to the music as freely as we once did, but I still see that sparkle in his eyes. I still feel his heart when we move to music. It may be as simple as a sway in the kitchen or a hand hold during a song, but he’s there. The music is in us and it always will be. He stayed. And for that I’m the luckiest woman alive. For him I’ll keep fighting. Always and forever.

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