An Ode to My Thighs: Thank You for Helping Me Through Chronic Illness

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To my lovely thighs:

When I started gymnastics, I quickly realized I was one of the gymnasts with “the big thighs.” I grew to hate you. Through elementary school, through middle and high school and through college, I always wished you would go away and I would magically wake up with skinny legs.

 

I remember going to kickboxing when I was 18, and the instructor telling me I was lucky to have such “muscular legs.” I scoffed at his comment. That guy had no idea how badly I wanted skinny legs; not the big ol’ stocky legs I was stuck with. In high school, I started to notice lines on my thighs. Later I learned these were called stretch marks. This made me hate them even more.

Then I got sick. I lost a lot of weight. The sicker I got, the smaller I became. Even though you started to shrink too, you still remained the biggest part of my body. When I eventually landed in my EDS doctor’s office, he came in for the first time, and within five minutes of examining me said, “You don’t have any trouble with the lower half of your body, do you?” I told him no, and he looked me in the eye and told me, “That is because of your legs. They are muscular and are able to bulk up, which keeps you from having lower body EDS symptoms. Your legs keep your lower half glued together.”

I think I mustered up a quick, “Oh.”

Later in the appointment he told me he believed I also had some skin involvement, making me a classical EDS-er (cEDS). I asked about you darn stretch marks, and sure enough, I learned you are a part of the EDS skin involvement.

Then, I learned at my POTS appointment in Toledo that people with muscular legs have better success controlling their POTS because the muscles are the back up blood pumper.

I felt really guilty then. All my life you were just trying to help me and I was so cruel to you.

So this is what I have to say to you, thighs:

It only took me 35 years, but I am very sorry for hating you for most of my life. Little did I know you were keeping me from experiencing some major, major problems. And stretch marks, I can deal with you. I know you guys are not my fault, and there is not much I can do to prevent you. I will try my best to consider you to be marks of love from here on out. So thighs, and stretch marks, I will try and make it up to you starting now. I will love you, embrace you and keep you strong because you are a part of me – a very, very important part of me… the healthy part of me.

And for that I am finally grateful.

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Thinkstock photo via netris.

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Why I Grieve When I'm Given a New Diagnosis

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Grief, loss and guilt.

When you hear these three words, bereavement is probably what comes to mind.

You wouldn’t be entirely wrong, but it’s probably not the type of bereavement you think.

You see, I am very much alive, but I still went through the grieving process over myself when I realized I was chronically ill with no cure for my illnesses.

I didn’t think I would grieve when my diagnoses were confirmed. I didn’t think I would still grieve with every new diagnosis given, but I do. I was diagnosed with physical illnesses, but I am still alive, so why was a grieving? I wasn’t prepared for that sense of loss I experienced. I had to recreate myself, and that was hard, because I wasn’t sure who I was without the things that made me, me!

I thought I wasn’t entitled to my feelings. How dare I grieve for myself when I am still alive. It took me a while to realize my feelings were totally acceptable. My life was going to change dramatically, my future plans scrapped. I was more than entitled to my feelings, even if I wasn’t expecting them.

It’s OK to grieve over the past, over yourself. It’s OK to feel lost and in uncharted territory. It’s OK to be angry too.

It’s what you do with these feelings that matter. At first, I was overwhelmed by how I could find out who I was without doing all the things I used to love. I was adventurous. I was sporty. Caving? Climbing? Abseiling? Skiing? You name it, that was me, that was who I was. Without those things, how was I going to be me?

I am still me. I am still adventurous. I horse ride with the Riding for the Disabled Association now, instead of climbing etc. I am still able, I am just differently able now.

Part of coming to terms with the loss of your sense of self is accepting that’s how you feel and that’s OK.  It’s also helpful try to get back into things you used to do, or altered activities you can do.

You are entitled to your thoughts and feelings. Every.Single.One. (Even the ugly ones.)

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Thinkstock Image By: Chiclayo

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How My Perfectionism and My Illnesses Are Constantly at Odds

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I’ve always been a perfectionist. I was identified as gifted at 7, and I’ve always had many of the quirks that go along with that. Many of these quirks then overlap with chronic illness tendencies, so they tend to take over if I’m not constantly keeping them in check. Anxiety, depression, OCD tendencies, but most of all, perfectionism.

I always had to get a perfect score, always had to say the right thing, always had to have a plan, or the world would explode. Or so my brain convinced me.

 

I’ve also always had chronic illness. I have Ehlers-Danlos syndrome (EDS), which I of course was born with. I then developed postural orthostatic tachycardia syndrome (POTS) around the age of 11. My illness and perfectionism are constantly at odds – they can’t coexist together – so it seems like they are each constantly trying to obliterate the other. And I’m just along for the ride.

For instance, over the past year I had eight months where I was completely bed/couch-bound. I felt like a leech on my family, like I was just a constant burden. It is terrible being an overachiever but unable to achieve the simplest of tasks. If it wasn’t for my best friend who just came and kept me company over those months, I would have sunk so far into depression that my illness would have succeeded in its mission to snuff out every other part of me. She truly was my lifesaver.

But even now that I’m starting to get back to my “normal,” my illness still tries to dictate my life. I’m about to enter my senior year of high school, and I don’t know what I’m going to do about college. I found a college I would love to attend; it would be the perfect fit for the one side of me. I never thought a school such as this one existed. But my illness will keep me from it, since I can’t move across the country to where I have no support system. Even if I was at the point health-wise where it would be a feasible option, I would live in constant anxiety. What if my health suddenly declines overnight again? So the college of my dreams is not attainable.

Another way my perfectionism and illness are at odds is when I commit to helping someone, and then my illness makes me incapable or the work I do inadequate. Like I am editing a book for my friend, but my brain fog keeps getting in the way. I’ll go over it three times, and still find things I missed just because my brain isn’t working. She is amazing, and immediately reminds me it’s not my fault, but it is. I may not be trying to be undependable, but there must be some way I could push past it. My mind betraying me in the form of brain fog is one of the hardest symptoms for me to cope with. My brain was the one thing I could always depend on, and then it just, wasn’t.

I just try to hold on to all the wonderful things my illness has brought me when I’m too focused on the negative. Like my best friend – we wouldn’t be such good friends if we both didn’t have chronic illnesses. These illnesses are a huge part of who I am – I wouldn’t be the same person without it – and I like to think I’m a better, stronger person because of it.

So I’m slowly letting go of perfection, realizing it is never really attainable. My best is good enough, even if my best in the moment is just sitting on a couch, trying not to lose hope. Perfection will never happen; the world is imperfect. But if what I go through helps one other person dealing with pain like this, it is worth it, and so much better than perfection can hope to be. Because I helped someone with my imperfections.

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Thinkstock photo via amoklv.

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Why I Don't Like 'Back to School' as a Mom of a Child With EDS

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It’s August. Time to get ready for school. Yippee!

It’s August. People seem to be dreaming about fall — pumpkin spice is everywhere. Stores are full of brand new, shiny school supplies. Parents are looking for the latest trend in clothes to buy. Kids are excited about seeing their friends again and their extracurricular activities.

And I hate it. All of it.

For me, and those like me with a rare chronic illness, August and this time of year can be filled with stress and dread. My son has Elhers-Danlos syndrome, postural tachycardia syndrome, mast cell activation disorder and chronic pain syndrome. One of these is challenging on its own. Together, they are life changing.

There are before-school appointments to fit in. There are 504/IEP/ARD meetings to have at school. Can he physically handle his classes for this year? We have to walk the school to see how much walking it will take between classes so we can work with the school to schedule the classes for the best pattern to get the least amount walking. Are there multiple floors? Does he need an elevator key? Is the nurse prepared? Have I dropped off his meds and medical equipment? Does the attendance office know he will miss more days than most students? Can I get a second set of books? Can I get them digitally? Have the teachers been educated? Do they understand? Are they prepared? Do they understand his need to stay hydrated? Is his rolling book bag allowed? The questions go on and on.

 

Then I have to shop for supplies. While others grab the cute, colorful items, I’m comparing the weight of notebooks, the width of pencils and pens for the best grip, trying to find the least number of items for him to carry and still be compliant.

Now for clothes. I can’t shop for trendy. I must shop for jeans that are loose enough to be able to wear braces underneath. Shoes that will allow for ankle braces. Shirts that are soft enough not to agitate and dyes that won’t produce an allergic reaction.

And that’s all just stuff.

The real struggle is for my son. Is he mentally ready? Will he be made fun of again? Will he be able to control his anxiety? Will he have friends? Will he bullied again? Will he be strong enough to speak up for himself when the teachers go against his 504? Will he be able to make it all day? Will I get to him fast enough in a crisis?

It’s August, and I’m not looking forward to the beginning of school.

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Thinkstock image by seb_ra 

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Dear Healthy Friend: I'm Sorry I Grew Distant After Getting Sick

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Dear Healthy Friend,

Imagine being trapped in a room with someone who was trying to hurt or kill you. You may be able to elude them temporarily or use your best maneuvers to ward off the attack momentarily. Eventually though, you would grow tired and your assailant would be ready and waiting to pounce on you. Eventually you would succumb to your wounds. There would be no more fighting and the person assaulting you would win.

 

That is what it is like to live with Ehlers-Danlos syndrome and Chiari malformation. Or any chronic illnesses for that matter. I am trapped in a body that is trying, on a daily basis, to trip me up, knock me over and steal any clarity of thought I may have that day. These illnesses have not only taken a toll on my body but on my mind, emotions and self-esteem as well. I have walked through every emotion I can possibly think of to arrive at the goal line of acceptance. I accept my illnesses now and have begun to live within the “new normal,” but getting to this place was extremely difficult and heartbreaking.

I would have never shared this with you but there was a time where I harbored hatred and envy for you and your healthiness. I was jealous of your social media pictures of all the fun activities you were a part of and of how beautifully healthy you looked in them. I could not see it then, but I was protecting my heart from the pain of not being able to be there. I had no right to be hateful; it was merely a smokescreen for my pain and grief. If I was angry about what you had, I did not have to look at what I didn’t have.

I would have never shared this with you but I typed text after text asking for help or saying I needed you, only to erase them before I could hit send. I needed help but never wanted to admit it or seem weak. I need help but was always taught never to depend on anyone. I need help but am afraid of being a needy sick person everyone pitied. So instead of sending the texts, I erased them and sent nothing at all. I just stopped texting and got angry at you for growing apart. It was not fair of me but still I sit, mad at someone else for me pulling away.

I would have never shared this with you but I cried and grieved over the empty space that was left in my life where you used to be. Each time I had to RSVP no to an event because it was not disability-friendly, I sobbed. There have been times I have wanted to share something with you but after this new space and shift in our relationship, it did not seem appropriate. There are times I wish I could go back in time and enjoy some of the good moments just a little bit more.

I would have never shared this with you but some of your words and attitudes you shared with me in the beginning were hurtful. I know you never meant to be, but my pain was dismissed and my joy over little victories made trivial. Words can be so hurtful and the effect can last much longer than the split-second choice to say them.

I would have never shared this with you but the healthy, beautiful, joyful person you are is who I used to be. It is so heartbreaking to be around you because I used to be you. It is getting easier as I stumble towards acceptance but I am not convinced anyone will be waiting there for me.

Love,

Your Not So Healthy Friend

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Thinkstock photo via AntonioGuillem.

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zebra tattoo and woman with zebra ribbons tattoo

32 Gorgeous Tattoos Inspired by Ehlers-Danlos Syndrome

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If you or a loved one struggle daily with a chronic health condition, sometimes a visual symbol of this battle can serve as a reminder to keep persevering as well as a way to raise awareness. Many of those with Ehlers-Danlos syndrome have gotten meaningful tattoos to spread the word about the rare condition and show their support for EDS zebras everywhere.

We wanted to see some of the creative designs those with EDS have chosen to commemorate their battles, so in partnership with the Ehlers-Danlos Society, we asked their community as well as our Mighty community to share photos of their tattoos that were inspired by Ehlers-Danlos syndrome (check with your doctor about any potential side effects of getting tattooed).

Here’s what the communities shared with us:

1. “This is my tattoo for my beautiful daughter Bella. She picked the colors herself. Since her diagnosis, she has met every painful day, dislocation, subluxation, surgery, hospitalization, and challenge with dignity, tenacity and courage far beyond her 9 years of age. She now has a feeding tube placed and is attending regular physical therapy. She still has bad days, and she is aware of the reality that she always will for the rest of her life, and we deal with these bad days together as a family, and we will live every good day we have to the fullest. Now, she is anxiously awaiting her Make a Wish trip to Disney in a few months.”

tattoo of zebra

2. “After my first appointment with a specialist, I was incredibly emotional. Putting a name to all the struggles I had faced in my life was a huge deal. My parents and I were emotionally exhausted. I have wanted this tattoo for years. It says ‘child of life’ in Hebrew. It reminds me every day to take joy in my life and that I was born to shine bright. Nothing can dim that, not even EDS.”

tattoo of hebrew words meaning 'child of life'

3. “My son was 4 when diagnosed; we had no idea EDS even existed. This tattoo is the awareness ribbon fallen apart, much like the EDS collagen. The top forms an ‘S’ (both my sons’ names start with ‘S’). Stars in zebra with their favorite colors. I have a purple star but it is empty as I do not have EDS. Its been a great way to spread awareness.”

zebra ribbon tattoo

4. “Reminds me to be strong and have faith! Love the serenity prayer. It’s helped get me through day to day when I’m in pain!”

tattoo with words 'courage, faith, wisdom and serenity'

5. “In February I was diagnosed. The struggle is every day. That’s why I need to be brave.”

tattoo of heart with zebra pattern that says 'be brave'

6. “This is Zed the zebra. Us EDS’ers often get told we are zebras because doctors are told when they hear hoofbeats think horses, not zebras. I also chose this ‘wobbly’ design because we are quite wobbly!”

zebra tattoo

7. “I think this one is pretty self-explanatory… But I will never let EDS beat me. I’ll keep punching back!”

tattoo of cartoon zebra hitting a punching bag

8. “I got my tattoo for my 21st birthday. Turning 21 meant I have been in constant pain for over half of my life. My tattoo is there to remind me I’m stronger because of my pain and I can make it through any bad day because I have made it through them before.”

tattoo that says 'with pain comes strength'

9. “Coverup from a surgery scar (well, two surgeries). I think the zebra speaks for itself!”

zebra tattoo covering scar

10. “I wanted to take control of my body. Because my husband works and we don’t have kids, I’m alone a lot. When I’m in pain, or feeling sick, I want my husband. Because he can’t always be here, I got the last stanza of an ee cummings poem, our poem (read at our wedding), as a touchstone. Because I carry his heart. I carry it in my heart.”

tattoo of ee cummings quote

11. “Here’s mine. I got it to represent the struggle I and other patients have to get diagnosed after having my symptoms dismissed for a decade.”

tattoo of zebra pattern

12. “I had nine operations and wanted to take back control over my body. This is my biggest piece and it’s not finished, but it represents me not letting EDS dominate my body.”

tattoo of landscape with trees and sunset on a woman's back

13. “When I attend my medical appointments and feel like I am not being heard and doctors are skirting around my EDS, I look to my arm to remind myself I am a zebra with integrity and have a voice. My voice deserves to be heard. When this does not resonate I am confident to make the decision to look for a care provider who will work with me and truly want to understand.”

tattoo of zebra with the word 'integrity'

14. “‘Keep moving forward.’ My mom liked this one and reminded me of it constantly after my colectomy (I have vEDS).”

tattoo that says 'keep moving forward'

15. “The top one is an acronym – I got it before I was diagnosed. I was going through so many health issues with no answers. I’m a firm believer that things happen for a reason, so I got this acronym to remind me when I felt my worst. EHFAR = Everything Happens For A Reason. Once I was diagnosed with hEDS, I got this butterfly tattoo wrapped in the EDS ribbon. The butterfly is a reminder of how short life is and that we need to live it to the best of our abilities.”

tattoo with acronym 'EHFAR' with butterfly and zebra awareness ribbon

16. “I have a medic alert tattoo. It comforts me to know if I become unable to speak, my tattoo can speak for me. And I got the lily with it to remind me there is more to me than being sick.”

flower medic alert tattoo that says 'ehlers-danlos and dysautonomia'

17. “Guess it also speaks for itself! We’re all zebra warriors! And right next to it is tape for my wrist.”

zebra warrior tattoo

18. “It’s to do with the heart condition I have which is caused by EDS and the journey it has taken me on. Due to an amazing charity, Flying Scholarships for Disabled People, I will be learning to fly at the end of this month.”

heartbeat tattoo with airplane

19. “A reminder that tomorrow is another day and has the potential to be better than today.”

calvin and hobbes tattoo that says 'one day at a time'

20. “I was recently diagnosed. The tattoo artist said, ‘You want it upside down?’ I told him this is for me, not for anyone else. I chose this design because the zebra, I call her Sarah, looks fierce, and whenever I feel weak, I just look at her to remind me of how strong I really am.”

zebra tattoo

21. “Because of my EDS diagnosis I started to live way outside my comfort zone. Living outside that zone has given me so many so more experiences than if I was healthy.”

tattoo that says 'life begins outside your comfort zone'

22. “Mine are pink water lilies. I got mine before my diagnosis, but water lilies close every night and open back up in the morning. Every day the lily opens to start a new day. I’m still here. I’m still pushing on. I’ve got my diagnosis. I am not a hypochondriac. I suffer, and I love my lilies.”

pink water lily tattoo

23. “My friends and family often call me T-rex because my arms are short and I can never reach anything… So with the help of pickers or grabbers I’m unstoppable. I have vEDS.”

tattoo of t-rex holding walkers with text 'unstoppable'

24. “A bouquet of spoons for the spoon theory, but it’s due to my chronic pain from EDS.”

bouquet of spoons tattoo

25. “This is a tattoo on my side. I got it before I knew I had EDS, but I have faced various health challenges all my life. It is a quote from Shakespeare: ‘My drops of tears I’ll turn to sparks of fire.’ (Henry VIII, Act II scene iv). I used to do a lot of acting in Shakespeare plays and this inspires me to turn the horrible things life has given me into fuel for my strength and compassion for others.”

tattoo of shakespeare quote

26. “The quote is from a saying: ‘You wake up each morning to fight the same demons that left you so tired the night before, and that, my love, is bravery.’ And the zebra ribbon is in the little girl’s hair. The monster for us all I’m sure is EDS.”

little girl with ehlers-danlos awareness ribbon in her hair talking to demon

27. “My blonde girl tattoo represents me. I placed her there below my knee because that is where my bone was fractured. The crack in her face represents the crack that was in my bone. Three of the ligaments in my knee had torn, my ACL completely ruptured, and without the support of those ligaments my leg bones smashed into each other, cracking my tibia plateau like an egg with the crack extending down my tibia. I wasn’t able to walk for months. Ligament and tendon tears/ruptures are a common complication of vascular Ehlers-Danlos syndrome. Below my girl is a zebra print awareness ribbon. The zebra print awareness ribbon represents rare diseases. vEDS is a rare disease with no cure or treatment.”

tattoo of girl with cracked face and ehlers-danlos ribbon

28. “‘I will always land on my feet.’ My journey with many things, including Ehlers-Danlos, has not been easy but I’ve always been OK. I have an emotional support cat for my depression that is triggered by my EDS and of course, I am flexible, much like a cat.”

cat landing on its feet tattoo

29. “I have chronic epicondylitis in both elbows (due to EDS) that has really affected my daily functionality. But I like to see humor in everything, so I make myself laugh every day when I look at my ‘out of order’ post-it note tattoo just above my left elbow.”

out of order tattoo

30. “I got the death’s head moth with a zebra print body for EDS. It also has my own ECG heartbeat coming out of each side. I got it because EDS is like being half a person, half dead and half alive. Some days I don’t feel human at all, more like a zombie, so I wanted the moth with the symbol of death on its back to show how it feels.”

tattoo of a moth with a skull at the center

31. “It’s from the Lion King Broadway soundtrack. The top line is in Swahili, the bottom is mirrored: ‘There’s no mountain too great, hear the words and have faith.’ I have vEDS.”

quote from lion king soundtrack tattoo

32. “I got a watercolor portrait of a zebra on my leg for EDS. Obviously the zebra is the mascot for EDS, but [I got] the watercolor form to show that not everything is distinct, and a lot of things flow into one another.”

watercolor zebra tattoo

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