How I Reprogrammed My Brain

 

Working through my Eating Disorder and Coping with Ehlers Danlos

My whole life I have been aware of my body image. My earliest memory of having a negative body image was third grade.  We were in gym class and put into groups of five or so.  As best as I can remember or describe it, we were meant to pull the smallest classmate around on this wheelie scooter with a rein type thing but we only had time for one kid per group to ride.  (Weird, I know, but stay with me.  No idea what “sport” this was).   I was in a group with this girl I was always compared to because we were the two skinniest in class.  This girl and her mom also bullied me and my mom.  Obviously, my mom didn’t give two shits if the other mom was hateful to her because she was a grown adult.  But I definitely cared that this girl was hateful to me and still is today, as grown adults.

So, I went to go sit on the scooter because I always got picked as being the lightest kid. The gym teacher came around and goes “Oh no, Jordan, “Other Girl” is much smaller than you.”  The mean girl laughed at me and I had to help pull her around the gym like a sled dog.  And now that I’m laying this out in prose, it’s even more messed up than I realized.  This was the first time I attributed my value to my relationship with gravity.  Isn’t that insane?

Sprinkled throughout my childhood, random relatives would always say “Wow, Jordan, you’re so skinny” or something similar. It was always phrased as a compliment.  Like I somehow won a genetic lottery prize that made me more valuable than other people.  I come from a family of women who have hips that don’t lie.  I, as a child, was a rarity compared to what other children in the family had looked like.  I was just a late bloomer though.  I hit puberty and became thicc (with two c’s).  This is where things took a turn for the worst.

I was on the swimming and diving teams from middle school through high school. I also did cross country in high school.  I was super strong.  In cross country, I lovingly earned the nickname “Voluptuous Boobies” or VB for short by my teammates during cross country camp when we changed into our swim suits to go play in the waterfall.  Despite having a “desirable” feature, my peers commented on how “big” my thighs were and one in particular told me I could work on them and be prettier.  In retrospect, they were muscular and thigh shaped.  Constantly being compared to my teammates was rough.

Then I got a boyfriend. This relationship was not healthy.  It involved coercive rape, mental abuse, pathological lying, etc.  But that’s a story for another blog post and boy is it a doozy.  He also helped further my unhealthy thinking though.  He told me I needed to work on my thighs, too.  He said Alessandra Ambrosio was the most beautiful woman in the world and that I should work on my thighs to get them to look like hers.  And also her body in general.  As a full-fledged adult, I realize this is insane.  First of all, she is 5’10 and I am 5’8.  In addition to being completely different humans with completely different genetic makeups, ethnic backgrounds, etc., she is PAID to look that way.  He showed me Victoria Secret runway photos for comparison.  Alessandra doesn’t even look like she does on the runway.  She has given numerous interviews about her runway prep from things like two-a-day personal training sessions, juicing, and top of the line everything.  She is paid to do this and they prep in extreme ways before the show.  But my 17 year old brain didn’t understand that.  Not at all.

After high school, I started modeling. Small stuff, mostly, for local designers and runways.  I started getting attention from people.  This eventually led to my foot in the door with acting, which I still do today.  But while modeling, a big photographer who I later found out had some “allegations” against him, told me I had a great look, was barely tall enough, and to lose weight.  I talked to the guy I was dating at the time and he said “Well, if he said you need to do that, then I guess you need to do that”.  To my ex’s credit, he was not passing judgment on my appearance.  He was a runner and used the example that if his coach told him he needed to lose weight to hit his PR in a race, he would do it.  But what he didn’t know, in my disordered brain, was that his seal of approval was the permission I needed to get drastic.  He looked at it from an athlete’s viewpoint and didn’t know about the ED struggle I had grown up with, so this was no fault of his.  My brain didn’t distinguish.  I started eating once a day.

I dropped weight and I dropped it fast. I felt great about myself.  I also learned something about myself.  This is when I learned that my bone structure would never let me get to where I wanted to be.  People that I knew started telling me that I looked sickly and too thin.  While in this state, I could hardly squeeze into a US size 4 jeans.  I had no extra fat, but my bones didn’t want to be that small.  Until that point, I thought anyone could model if they had the height and the diligence to stay thin.  I was starving myself and the realization that my actual skeleton was made differently than supermodels was a tough pill to swallow but a good one to remember and take with me into recovery a few years down the road.

During my peak sickliest, I met Matt who later became my husband. He encouraged me to put on weight because he was worried about me.  I did.  My brain was coming around but it never fully got there.  I spent the next 5 years obsessing over my eating, my weight, my body image, but never really addressing or doing anything about it.  My Ehlers Danlos started to get pretty symptomatic and painful, not that I knew what it was yet.  That led to some weight gain which adds to chronic pain.  In 2017, my grandpa passed away.  This sent me down a spiral with worsened OCD symptoms (diagnosed at age 3) and anxiety.  I started coping with chocolate, using Matt as a portion guide even though he is 6’1 and a male, and eating things in fours.  Four is my safe OCD number.  I started obsessing about food being wasted taking it upon myself to ensure it wasn’t wasted.  I still had that anorexic restrictive thinking pattern, but I had an OCD compulsion to eat.

I gained a few pounds and was miserable. I wasn’t properly nourished and I was the heaviest I’ve ever been and still wasn’t considered overweight by my friends but that didn’t matter to me.  My BMI, however archaic it may be, still said I was overweight even though everyone around me, including doctors, said that was bollocks.  I dreaded eating because I was obsessed and controlled by it.  It was then, in early 2018, that I decided to make an appointment at the Charis Center, an eating disorder clinic.  I started therapy with a psychologist.  She began to preach this point of “can you appreciate the function of your body separately from your opinion of how it looks?”  That concept was totally foreign and blasphemous to me.  My whole life, starting from age 9ish, I put value in what others thought of my body.  I never realized I could nor had a reason to appreciate it for myself.

At the beginning of 2018, I decided to be selfish. I decided to make it a year of focusing on my health, my mental health, and self-care.  I got a tattoo across my thigh for a charity event that says “self love” to remind myself that it’s no one’s business what my thighs look like.  I started my aerial training and horseback riding solely because I thought it seemed fun and I wanted to learn.  I have since had to take a break from horseback riding because of a bum knee and plantar fasciitis.  But I have upped my aerial training and started yoga.  I recently performed in my first showcase on lyra (aerial hoop) and in the last few months, as I’ve started to learn more difficult skills, started to truly understand what appreciating my body for the functions it can do means.  Having Ehlers Danlos (EDS) and an eating disorder (ED) has been like trying to swim upstream.  My EDS causes physical limitations and makes being active unbearably painful.  Some days, it’s all I can do to shower and make it to the couch.  On these days, my ED makes me feel guilty about not being productive or active.  Being athletic with an ED can be a slippery slope and I have to be careful not to get obsessive about exercising.  I also have to keep the binge eating in check from thinking “I worked out, I can eat everything in fours now”.

Finding a new sport has been crucial for my self-esteem. Keeping my body strong has helped me manage my EDS as well.  I initially resisted the idea that I would be able to appreciate my body’s function regardless of what it looked like.  Treating my eating disorder and discovering I have a physical disability (and that I’m not crazy) at the same time has been really rough.  How do I appreciate the function of a body that betrayed me at my conception?  I didn’t get my official diagnosis until this year but I’ve known my body wasn’t like everyone else’s since elementary school because of all the dislocations and party tricks I could do.

Throughout all my therapy, with a prevailing sentiment of appreciating the function, I decided to reprogram my brain. When I see my classmates nail their hoop skills easily as I struggle, I tell myself “I’ve come a long way, don’t compare yourself to people whose bodies function normally”.  If I feel down on myself about less toned areas of my body, I remember that I’ve only been able to get back into physical activity in the last 8 months and it’s better to focus on nutrition and the rest will follow.  My brain needs to be healthy before I can worry about my body’s appearance.  If I land a new skill in lyra, I praise myself and remind myself that this is what doc means about appreciating the function.  I have gained new strength and unlocked new potential and the appearance of my body had nothing to do with it.

I still have bad days though. I have had melt downs during training that resulted from dislocated hips and being angry at the universe for being dealt this hand.  From being angry that I have 15 year old injuries that will never fully heal because my body doesn’t produce collagen properly.  But then I switch my thought process and tell myself that the reward will be sweeter because I’ve had to work harder than the average person.  I remind myself to be proud.  I remind myself that I can from a long line of hard headed Hart’s and I’ll be damned if I let my body hold my brain back from the things I want to achieve and I’ll be damned if I give someone else the power to tell me what my body should look like again.  I decided to let my limitations empower me, appreciate my body for what it can do, and not punish myself for what it can’t.  Some days I will slip, but I’ll never let myself fall again.

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Surviving the Holidays with Chronic Illness

The holidays are lovely. From Halloween through Christmas, I enjoy this season so much.  But as much fun as it can be, I have an added complexity when it comes to my celebrations.  I have chronic illness and an eating disorder.  Traveling and being surrounded by food gets to be very difficult for me.

As we approach the holiday season, I start to dread the thought of riding in the car for long hours. Don’t get me wrong, I love visiting family.  But this is the one time a year where I have to travel over an hour several times per week to go to all the gatherings.  If you have a physical impairment like I do, you know where I’m coming from.  Riding in a car can be one of the worst things for my physical wellbeing.  It’s stressful for me and my husband.  We can’t travel simply; we have to travel with my condition in mind.

We have worked out a little bit of a system with our longer travels. When we arrive, we find a secluded room and Matt helps decompress my spine.  I’ve shown him where to do trigger releases and how to apply pressure and force my muscles to relax.  Someone once explained Ehlers-Danlos to me by saying that my muscles and connective tissue switched jobs.  Because the connective tissue is too lax, the muscles tighten up to try and do the connective tissue’s job since they’re slacking.  As I understand it, this is what causes big, knotted muscles that don’t want to release.

So often, I feel like nobody besides my mom understands. It’s so easy for someone to say “you just need better pain tolerance”, but that isn’t what this is.  The holidays are a time when the family you see a handful of times a year gathers together and with that comes a lot of uncomfortable or awkward questions.  Or they come at you with quick fix methods.  Recently, someone told me that I’m only sick because I’m not vegan.  That becoming vegan will fix my problems.  Let me reiterate: somehow switching to veganism, changes your actual genetic makeup…  Ummm…..?  Nothing against the diet, but google educated doctors need not apply.  I just find that sort of back and forth to be exhausting.  I don’t need opinions on how to cure my condition because there aren’t cures for your genes.

To add to the top of the chronic illness holiday problems, my eating disorder likes to rear it’s ugly head this time of year, too. I’ve had a pretty good handle on it for the last couple of months through therapy.  I haven’t prepared for the inevitable talk of food at family gatherings though.  The guilt I feel when I hear someone else say they will pass on dessert or they can’t have this or that is very hard to deal with.  It makes me feel like I am failing if someone else is refusing and I partake.  Like I’m not strong enough with my willpower.  Offering me seconds or commenting on the amount (whether it’s a little or a lot) of food I have is also quite taboo for me.  It’s best to avoid talking about diets and quantities with me at all.  My guess is the conversation will be more engaging if we scratch beneath the surface and talk about our real interests and not just “What do you think of the stuffing?”

This year has been the year of me prioritizing me and my health and wellness. My goal this holiday season is to be frank and honest with people if I’m confronted with an uncomfortable question or comment.  I intend to tell people what I need from them.  I usually let my own feelings get hurt before I challenge what has been said or done to me.  So if someone comments on my plate of food, I intend to speak honestly about the way that question or comment makes me feel.  If someone asks an insensitive question about my pain, I also intend to be vocal about my feelings in regards to these things.  And finally, I’ve promised myself to be open about my physical limitations.  Not to comply with activities that might injure me for fear of looking weak or wimpy.  I’m prioritizing myself for my own health and wellness and that aspect alone is how I will survive the unknowns of this holiday season.

The Chronic Friend Tax

Living with chronic illness is quite taxing. It taxes the mind, body, and soul almost equally.  As I’m sure most people dealing with something chronic have noticed; it wears on your relationships, too.  A lot of the resources and anecdotes I’ve found online when researching for myself dealt with helping to cope with the physical aspects of chronic illness (specifically physical ailments, mental health is another discussion for another day).  What I didn’t find was advice on how to maintain my interpersonal relationships and help people who can never understand, understand.

The best way I’ve found to explain chronic illness to friends and family has been the Spoon Theory by Christine Miserandino. If you’re not familiar with the analogy, you can find it here: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

But this got me thinking and I decided to do some self-reflection. I’ve found myself frustrated with the expectations of my relationships lately.  There’s a precarious balance between making your friends and family aware of what you’re dealing with and running it into the ground and making people uncomfortable.  For me, my illness and limitations are something I have to think about constantly.  My friends and family don’t.  I don’t look sick, they can’t feel what I feel, so out of sight out of mind, right?  It’s not their fault and they don’t mean to disregard my feelings, but it still gets very frustrating for me.  This is what I lovingly call the Chronic Friend Tax.

If you’re my friend, I’m your biggest cheerleader and supporter. Sometimes being a good friend comes at a physical detriment to my own wellbeing.  Some might say, “Well, just don’t do things that make you feel that way.”  Everything makes me feel that way.  Everything costs a spoon or two.  So I’ve started explaining it as the Chronic Friend Tax.  It’s the extra spoons it takes to be your friend.  It’s the reason I might leave early from a gathering or fall asleep while hanging out.  It’s why if you invite me to dinner, we can only go to certain restaurants that have dishes available without certain food triggers.  My life and the hoops I have to jump through to stay healthy are high maintenance.  It’s not easy to be my friend but it weeds out the fakes, too.

There’s also a level of understanding I expect from my friends and family. For example, if I’ve traveled more than 30 minutes to visit or hang out with you, I’ve willingly put myself through pretty severe back, coccyx, and hip pain to see you.  In some ways, I expect that to be appreciated.  That does NOT mean feel pity or guilt.  That means appreciate the commitment to our friendship.  I don’t want or need sympathy.  These things are facts.  I just want mutual respect from my friends and family.  The frustrations come in when careless comments are made.  Saying things like “You’re always in pain” or “why are you always sick” get to be pretty negative or hurtful.

My advice to friends who might struggle to understand what their loved one is going through is to remember the tax. The extra spoons are worth being your friend.  All we ask for is understanding, acceptance, and respect.  It’s not easy being our friend and it’s not easy to be us.  But we will willingly pay the tax for you and hope you’ll do the same for us.

The Emotional Side of Chronic Pain

This is the article I wrote for Chronic Pain Awareness Month in September this year for the Ehlers-Danlos Society.  The original article can be found at: https://www.ehlers-danlos.com/jordanw/Jordan6.jpg

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It took a while for me to realize I suffered from chronic pain. It started with an injury. That injury just never went away. Then more injuries stacked on top of the first. They kept building until suddenly I realized that I didn’t remember what it was like to be pain-free. I didn’t understand why I was so prone to injury either. My whole childhood I thought I was so lucky to be the most flexible in my class. Party tricks like doing the splits and dislocating your hips at will make the kids on the playground think you’re cool. I grew up in the 90’s, so conditions like Ehlers-Danlos Syndrome were hardly understood, let alone pursued by doctors for diagnosis. I started pursuing my diagnosis in 2016 and didn’t get it until mid-2018 at the age of 27. My choices for sports and extracurriculars leading up to this would have been different had I been given the opportunity to understand my body before now.

Receiving my diagnosis brought me catharsis and remorse. I finally felt validated that my pain was real and I wasn’t crazy or seeking attention. I also had to mourn the life I thought I was going to live and come to terms with the fact that my daily life would always include pain. Suffering from tons of joint-related injuries, many doctors had felt I was just “a slow healer” and all these years of aches and pains would eventually go away. I lived believing there was a silver lining and all the debt from physical therapy would be rewarded with a pain-free existence. But my diagnosis shattered that dream. Waking up one day to realize you don’t remember the last day you weren’t in pain is one thing, but receiving confirmation that you’re going to wake up in pain every day for the foreseeable future is much worse. Now my doctor and I have a treatment plan to help combat the pain. My doctor says that keeping my body strong should help so that’s been my personal plan of attack.

Apart from the obvious aspects of being in pain like modifying my activities to protect my joints, keeping a donut cushion in my car in case my coccydynia becomes debilitating, keeping braces for various joint issues around, and generally running out of spoons by the end of the day, my daily life is affected as one would expect for someone who suffers from chronic pain. When it comes to my physical limitations I’m stubborn, I don’t ask for help when I need it and push myself past limits I probably shouldn’t. I think I’m still somewhat in denial about the permanence of my situation. As time goes on it sinks in, but I am still chasing the dream of rehab. Slowly, I’m realizing my ‘fake it until you make it’ model is faulty. However, in light of pain awareness month, I want to focus on a less obvious topic and that’s how the chronic pain inevitably affects my mental health.

Invisible illnesses and society don’t mix well in my experience. Add my Obsessive Compulsive Disorder into the mix and I really, really don’t handle it well, try as I might. When my symptoms progressed, everyone around me seemed to turn into a doctor. Everyone has a cousin or a friend who recommends doing this or cured themselves by doing that. It wears on my mental health to constantly be told by acquaintances I should work out more, go vegan, try these essential oils, etc. Trust me, I want relief or a cure as much as the next person, and I don’t mean to be negative, but there is no cure for faulty connective tissue. No cure for your own DNA. What they don’t know is that despite how well-meaning they are it isn’t helpful, it’s stressful. It reinforces the idea I have in my head that I’m a burden and should be doing more to “fix myself”. Generally, people seem to have a lack of understanding of my condition or chronic pain because they don’t personally have to deal with it. Which is fine, I’m glad they don’t have this. I have probably naively tried most of the things people have suggested at some point, too. But this kind of chronic pain just doesn’t have a quick fix as much as I want it to. I would prefer people’s empathy and an ear if I need it more than their suggestions.

After politely entertaining suggestions on how to cure myself, the next mental stressor and bringer of anxiety for me is the chronic pain denier. Being scoffed at because I don’t “look sick” and being told I’m weak or have a low pain tolerance if I let my guard down wears upon my positivity and confidence. If I casually bring up my pain in the company of an individual who is older than a millennial, it’s with almost absolute certainty that they will discount my pain due to my age. The popular phrase seems to be “You’re too young to feel that way, wait until you’re my age”. I try not to bring it up because then I feel the need to justify myself and explain what’s going on but it’s really no one’s business unless I decide to share.

I’m a glass-half-full person so I don’t like to focus on something that sucks. But I’m at a stage where my pain is noticeable to those around me, even strangers, because of the way I move and modifications I have to make. Even though my core support system is pretty great, it doesn’t erase my feelings of needing to hide my truth and disguise my pain. At work, I’m afraid to ask for modified equipment because I’m worried they will think I’m faking. Like, “if you didn’t need it before, why are you whining about it now?” Mostly, people are great, but there are enough doubters and naysayers in my life that reinforce these fears.

It’s emotionally draining having to defend my invisible illness and chronic pain to people. People just say some really insensitive things sometimes. I shouldn’t care, but I do because I’m human. On the flip side, I also feel insane guilt when it comes to my loved ones. It’s a major inconvenience to reach my physical limits when it comes to commitments and chores. Then I have to explain to my spouse why the dishes are in the sink even though it’s my turn to do them but I can’t because my body decided it’s done for the day or when I cancel plans with friends because I’m too exhausted to function, to drive, or be fun. Thankfully, most of my loved ones understand, but I’m always worried they won’t. It’s not convenient and I worry they will get sick of me. I’m sure it’s my anxiety but it’s a constant fear I have. I fear my condition progressing and becoming more of a burden than I already am to the people that I love. I fear that I can’t add to their lives in a positive way and the scales will tip out of my favor. That they will eventually decide I’m not worth dealing with or worth the hassle. These fears are what lead me to push my limits farther than I should.

I’m not a hypochondriac, I don’t want drugs, and I’m not a big baby. My hope is to raise awareness and be a voice for people suffering from chronic pain and to share my perspective and help others understand what it’s like to cope with this issue. Maybe to help and encourage acquaintances to think before they speak sometimes, too. It’s easy to let your pain win, but for me. I choose to fight. I struggle with pain and exhaustion every day. But I will forever choose to live and strive for joy and positivity. I cope with art. I make films, do photography, train in circus aerial arts, read books, and paint. I enjoy spending time with my spouse and our pets and families and I want to travel the world. My pain will follow me through all of this. This journey that I walk will always have a shadow.