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Coping Mechanisms

During Jessi Connolly’s InfluenceNet class Tuesday night on “surviving + thriving in transition”, she mentioned the difference between Coping Mechanisms and Escape Routes: one God-given, the other dangerous. That entire class really got me thinking, but this section stood out the most and has been on my mind ever since, so I started to identify some of my coping mechanisms during this season of transition.

What is this season of transition? There are a lot of things that cause this part of the year to be so hectic, but this year feels more like I’m turning over a new leaf than just going with the flow of the school year, the weather, the homework, and I think the Lord has put it on my heart to be aware of that. For instance, I went into Tuesday’s online class thinking I would take notes and shore up Jessi’s wisdom for next year, when I’ll be moving on to graduate school, but I left with a whole lot of clarity about just how entrenched in transition I am (thank you, God!). Here are the transitions I recognized:

  • applying to graduate school starts this summer- you’ll find me in a library studying for the GRE, learning medieval Latin and brushing up on my Biblical Greek and Hebrew, and working full-time as a nanny. Yikes!
  • transition of leadership in the non-profit organization I am involved with–and of which I’m now president!
  • moving from one dorm to the next, all without stopping home for more than a weekend to visit and hug my family (and cats!). I love hugs from my family. Oh boy do I miss those.
  • a shift in thinking about my future. I visited a very special place on Monday and Tuesday that has me thinking in a different way about where I feel called to in life.

And through all this, I started to pinpoint my coping mechanisms. In thinking about this, I wanted to make sure that everything that I am doing or using during this season is life-giving and productive to my own self-care. It’s very easy for me to get overwhelmed by stress and eat all the things instead of taking a beat, thinking about what would contribute to my overall wellness, and doing that. I turn to food a lot as an escape route, and I’m praying that the Lord would help me look at my choices more carefully to figure out where I’m escaping and how to use the tools He’s given me to cope instead.

A very lovely blogger Pint-Sized Mama asked the class what their coping mechanisms were, and I found everyone’s responses very helpful in identifying my own, so I wanted to share mine here!

My Coping Mechanisms

saucony

running

I have an on-again, off-again relationship with running, but today I did a crazy thing and I came home from work, about ready to burst into tears, and instead of ripping into that bag of popcorn before dinner, I put on my running shoes and went for a jog. It was nothing to call home about, but the fact is that I chose running over a few other way less healthy and less satisfying options and felt much better for it. I’m so thankful that my body allows me to do this, even if it’s only for 30 minutes! I’ll take it.

ytcu_suncare_bundle

yes to… skin care line

Y’all, I am in no way associated with this genius company, I promise. But there is nothing like sitting down at my desk after a long day and hitting my face with one of their cleansing wipes. It is incredible. I feel instantly refreshed, and since I’m too lazy to reapply my makeup, it means I go get dinner, my evening coffee, and even make a library run without any makeup on, which is never a bad thing! I’m learning how to be less self-critical without makeup. It’s a journey, but I’m taking steps. Anyhow, I can’t even tell you how wonderful my skin feels when I’ve taken my makeup off–without even leaving my desk! It’s become a major comfort factor for me and helps me focus.

taking walks + bookstore stops

This is a spot in the garden of one of my favorite campus buildings. It’s so glorious in the spring, and I like to walk there to think. It doesn’t hurt that one block over is also my favorite bookstore, where I love to browse for inspiration. One of my favorite sections is the cooking section–I can’t wait until I have a kitchen next year!

doodling

Fun fact: I love drawing…on my tablet! I got this for my birthday after eyeing my mom’s for years (she’s a watercolorist), and I love to doodle on it when I’m feeling stressed. I get so self-conscious about my drawing skills on paper, but somehow the computer makes me feel free to do whatever I want. If you do like to doodle on paper, I would highly recommend Zentangles–their method completely freed my controlling left-brain and let my creative right-brain take over on some rainy days this summer.

P.S. Speaking of doodling, I’m in the midst of a blog overhaul! I registered a new domain and am getting to work on the design little by little, so I probably won’t roll it out for a few weeks, but I wanted to tell you now because I’m so excited!! Stay tuned! 🙂

What are your coping mechanisms? How do you make sure they don’t turn into escape routes? 

The Self-Tracker Inside

On Saturday, I received this little beauty in the mail:

Garmin

A GARMIN! Don’t worry: I’m the last one to call myself an honest-to-goodness runner (yet…!). However, as I was doing my third day of Couch-to-5k last week (more on this later), I noticed that I was going at a 7min/mi pace, which is NOT ideal for a beginner runner, and certainly not for me! So I decided to invest in a training tool that will help me keep my pace a steady, manageable (and super slow) level so I can avoid injury at all costs! I love gadgets, and this one seemed like a wise investment that could grow with my abilities. It even has a walk/run feature–see? Perfect!

Sunday morning I was feeling really weighty. I felt something pressing down on my heart, but couldn’t figure out what it was, so I decided to go for a run. I ditched my Couch-to-5k app on my phone for the peace and quiet of running down by the Charles River so I could let my brain do some communicating with my heart, and just ran with abandon.

________

Let me digress: In January when I returned to campus after the holidays, I was feeling really, really good, so I decided to start the Couch-to-5k running app and see how far I got. Real talk? I was inspired by the Biggest Loser. Anyhow, I didn’t sign up for a 5k that go-round, and I stopped two weeks in because I didn’t have a tangible goal. This time, I’m signed up for my very first 5k (!) on June 22nd, and I’m determined to make it through! This will be my second week back on the program, and everything is going smoothly! I can’t wait to share how I’ve been recovering from each run (hint: lots and lots of self-care).

________

What happened when I let go and let my mind turn upwards to God? I ran 4 whole minutes without stopping! I couldn’t believe it. I walked for 3 minutes, then repeated the cycle twice more for a 21-minute workout, minus warmup and cool down.

You know something? I don’t care how unimaginative this is, but the verse I always, always turn to when I don’t think I can make it through something is Philippians 4:13: “I can do all things through Christ who strengthens me.” As a child, we used to play the Hide ‘Em in Your Heart series in the car, and the song that runs through my head most often is the one set to this verse. So today, I ran to the beat of the verse, and for the first time ever, I prayed while running. It felt so organic, so freeing, so beautiful.

I have a sin issue I am working through: pride. I am perpetually afraid of what other people will think about me, and it has been holding me back from so many things. In particular, it has affected my spiritual life. I have always searched for “the right way” to pray, the tactful, cheery, put-together way to pray because I don’t want to be messy, even in my conversations with God.

Well guess what? I am messy. I am not put together. I am a soul in need of guidance and truth, and that is what was on my heart this morning before I set out on my run. So really, God was helping me run toward humility: “When pride comes, then comes disgrace, but with humility comes wisdom.” (Proverbs 11:2). And so tonight I’m continuing that prayer, asking that God for wisdom and thanking Him for His grace.

So even with all the self-trackers in the world, I still need to remember to follow Jesus, the Self-Tracker in my heart.

My Heart’s Spring Cleaning

This morning I looked outside my window at the rowers on the Charles River and sighed contently: spring is finally here. The birds know it, the trees know it, and my heart knows it. It’s time for a spring cleaning of my perspective–and how I write this blog.

Since I primarily tweet about being a student with chronic illness, I found myself with less and less to post here this semester. Why? For a while, my EDS went into remission. It. was. glorious. It was the best I have felt since my freshman year of high school, and I tried to relish every second. That meant spending a lot more time with friends, singing till the sun came up, and really, truly enjoying academics. This left me conflicted, and silent: if I claimed to discuss being a student with a chronic illness when I didn’t feel like I had a chronic illness, where did that leave me?

I am so often tempted to shed layers of myself in order to squish into a certain mold; in this case, that mold is the chronic illness blogosphere, and the layers I shed to avoid hurting anyone’s feelings left me a shadow of the life-loving, vibrant person I am in real life, and left my blog silent for months.

I love reading faith blogs, but am not a “faith blogger”, I love reading chronic illness blogs but am less and less a “chronic illness blogger” (though my EDS has returned with a vengeance). I go through phases, but truthfully, writing about what is on my heart helps me stay sane in the crazy competitive environment I live in, and helps me stay grounded to what I truly believe and care about.

So I’m back here! But with a new heart-perpective. I don’t want to shed any more layers of myself, and instead will begin adding them back in to my online presence, and I’m excited! I can’t wait to share more authentically with you. I miss this space, and I miss hearing from you.

So what will I be talking more about?

  • faith, and my struggles with it. I hope that fellowship with others in the online faith-blogging community will deepen my understanding of God, and I hope that I can create a safe space to discuss fears, doubts, and, ultimately, hope in God. 
  • fitness. One of the things doctors always say to me when I first see them is, “Just exercise! It’ll solve all of your problems!” Well, no. I’ve had to learn how to exercise safely, without causing permanent or even temporary damage to my joints, and I’d like to share my strategies here. I signed up for a 5k on June 22nd, 2013, to keep me motivated, but there’s a cushion built in for injuries in my training plan. Everything I write about will be what my physical therapist and I have worked on together, so you EDS folks don’t have to worry about me!! That said, just because I can do it doesn’t mean you shouldn’t talk to your doctor–everyone has varying strengths and weaknesses with EDS (and in general!). I’ve realized that exercise helps me feel whole, and I don’t want to hide that anymore!
  • food (maybe). I’ve been playing around with how to eat right for my body in a dorm setting, and it has been quite the experiment! This summer I’ll be living on campus without a kitchen or dining hall services, so this might have to wait until the fall, when I have a kitchen in my dorm (!!).

Long story short: expect some changes up in here. Thanks for sticking with me, and I hope we can connect more this way!

{NHBPM Day 8} Come on, Eileen: A Letter to My EDS

I’ve recently decided that giving my EDS a name will help me focus my energy on combatting it in any way I can. Instead of being frustrated at the vast array of symptoms I experience in a vague, unproductive way, I’ve been able to sigh and say, “Come on, Eileen! Cut me some slack!” in an exasperated tone of voice, and even if the symptoms don’t let up, I’ve emotionally separated my disease from my self. As this flare rolls on and on, I’m finding it ever more helpful to give Eileen a good talking to, and then getting on with my life–leaving her by the wayside. Thus, a letter to my friend (frenemy) Eileen, my Ehlers Danlos Syndrome.

Dear Eileen,

It’s been a long road for the two of us. I’m not quite sure how to say this, but Eileen, my dear, I’m breaking things off. You should understand that it’s me, not you–I feel like I’ve grown up enough to go along on this road without you, and you’ve begun to hold me back.

When we first met 11 years ago, I don’t think anyone could have predicted the way things would go between us. I wasn’t quite sure what kind of friend you’d be, but you seemed persistent in trying to get to know me, and I couldn’t say no. I have to tell you that you’re kind of clingy (don’t take it personally). You started off only mildly annoying, I’ll give you that; you only made me stop writing every few minutes in class throughout middle school to snap my wrists back in place, but the only other option was to fuse those tiny bones together so I didn’t mind terribly much.

It was only until I hadn’t grown for two years but was still getting growing pains at night, crying as my mom smoothed Sore Muscle Rub over my aching body, that I began to understand just how attached to me you really were. Now that you’re threatening to take even more of my mobility and freedom, it’s time to get off my back.

You and I both know that this is a destructive relationship, and things just aren’t working out between us. You’re keeping me from living my life to the fullest, and I think it’s time you moved on.

What I’m about to tell you is so sixty years ago, but humor me for a sec: I think what you really need is a man. Yeah, that’s right, I’ve said it. You need a man who understands you, who completes you! This man– let’s call him Trey for short (though one day we’ll all know him not as Treatment but as Cure)– this Trey will suit you much better than I ever could. You don’t just need a friend to cling to for support, you need a rock who will be there for you when I never could.

Trey has to be strong and comprehensive, much more sophisticated and understanding than the 5% management kind of friendship I can give you. At any given time, I can only really help you about 5%: I can get up to 30% with pain medications, then another 5% with a heating pad, maybe 10% more with some magical Biofreeze or Tiger Balm, and if I have to move any body part I can help you another 25% of the way by adding some armor! But you deserve more. You deserve a man who can take you by the hand and make you completely satisfied–and I mean really satisfied: this Trey would give you effective collagen.

I know, I know, you don’t believe it can happen, but I do! I have faith that in our lifetime, the power of science will discover a way to give you exactly what you want and precisely what you need, and you won’t need me anymore.

So that’s it, Eileen. I’m declaring our 11-year frenemy-ship over, though I imagine you’ll try to hang around for a while, at least. It’s ok, I’m patient.

All my love,

Rachel

{NHBPM Day 7} Redesign a Doctor’s Office (sort of)

I’m trying not to feel guilty for being 5 days behind on National Health Blog Post Month, but things happen! In my case, a never-ending flare has me still catching up on last week’s prompts. 

 

I have to admit that I don’t pay much attention to the waiting room in my doctor’s office, because whenever I’m there I’m usually desperately trying to focus on the reading I need to catch up on, or emailing my professors to let them know that a note from the health services desk will be attached to the homework that I’ll have to leave in their mailbox, or trying not to succumb to the ever-increasing fatigue that attacks at the worst of times.

The waiting room is on the third floor of the tallest building in Harvard Square; its cement façade is out of place among the brick and cobblestone of the tourist-trafficked Square, but it provides one of the best views of our small part of Cambridge. The sunlight streaming in through the large bay windows does nothing to suppress my fatigue, and I often have to remove several layers as I sit in front of those windows, soaking up the sun.

Needless to say, the last thing I’m thinking about in the waiting room is how to redesign it to make it suit my needs better, but I suppose I have some ideas. First of all, I would love to have a clock in this waiting room. Right where a clock should go, there is a sign saying, “If you have waited more than ten minutes past your scheduled appointment time, please see the front desk”, as if to taunt patients with the fact that they will never know how long they’ve waited unless they repeatedly check their own watches or phones. Secondly, those chairs should be reclinable, or at the very least comfortableThere is just no way to get comfortable when you’re crowded in with sick patients who are sweating from the hot sun just as much as you are.

The most important addition I would like to see in the waiting room: tablets complete with software that would provide a likely list of questions your doctor will ask at your visit based upon your presenting symptoms. Does software like this exist? If so, it would go a long way in making each visit as productive as possible. If I didn’t have to stop and think up answers to questions I wasn’t prepared for, I would be better able to articulate myself and make sure I wasn’t missing a key part of my history or symptoms. With a chronic illness, it can be really difficult to remember which symptom goes with which diagnosis, or even to know which symptoms are relevant and worth mentioning. The more doctor’s visits I have, the better I can predict the questions that will be asked, but sometimes brain fog sets in and I need to rely on an external memory device for prompting. Usually, that device takes the form of a scrap paper I scribbled on in the waiting room as I tried to remember what to bring up, or even why I was there in the first place.

If a waiting room had docking stations for tablets that would sync to the doctor’s own tablet or computer, patients could prepare answers to commonly-asked questions (or even not-so-commonly asked questions, so nothing would be left out) as they waited, and then would be able to verbally add more depth to their answers with the doctor’s prompting during the visit. The software could even help the doctor identify rare or forgotten causes of a range of symptoms without stigmatizing the doctor’s lack of knowledge–any red flags would be subtle, and it would still be up to the doctor to decide to pursue more tests or information on anything suggested by the software.

I’m a huge fan of informing doctors of rare or under-diagnosed conditions because conditions like mine often remain undiagnosed–and untreated–until it’s too late to make any preventative treatment decisions. I know we’re probably a long way from using any type of software like this in making health care decisions, but at the very least a check list of commonly-asked questions available in the waiting room could help focus the patient’s mind and provide her with extra time to present a litany of symptoms.

 

{NHBPM Day 6} A Time I Took the High Road

Still playing catch up with these NHBPM Posts…

As a chronically ill college student, I have had to make many adjustments to my school schedule and course load. I dropped my fourth class this semester, and am very much behind in my other three classes. Luckily I have very understanding professors and, of course, a registered disability, but the feeling of guilt refuses to dissolve each day I am late turning in an assignment or can’t make it to class.

I do feel guilty when I simply can’t push through the pain, knowing that there are people out there who don’t have the option to put off doing work or completing other obligations, but I know that if I “buck up” and ignore the pain in my hands, or my migraine, or my subluxed SI joint, I could be putting myself at risk for a more serious problem or permanent damage. And yet the guilt persists: I look like a healthy 21-year old, I should be able to finish this paper. If Barbie goes to class with the flu, then I should be able to get out of bed too!

These thoughts do nothing for my self-esteem, and they make acknowledging my illness quite difficult, but it’s becoming harder and harder to shake them.

Unfortunately, some people assume that I do not feel guilty at all for missing an entire week of class, or postponing a midterm until my flare subsides, and I have conversations like this:

Friend: How are things going? You’ve been looking a little fragile lately, for lack of a better word.

Me: Fragile pretty much sums it up! I feel like I’ll fall apart completely if I step on this cobblestone sidewalk wrong. Luckily my professors have been really wonderful recently.

Friend: That’s great! What do you tell them?

Me: The truth. I don’t mind explaining my illness, and they’re often more willing to provide accommodations if I explain the extent to which it affects my life and my studying.

Friend: Have you registered with the Disability Office?

Me: Yup, and they’ve given me a letter detailing the necessary accommodations.

Friend: So what kinds of things do they let you do?

Me: Well, when I can’t make it to class, they’ll email the class notes with a brief summary, and I get help taking notes. I can use a laptop for my final exams if necessary that day, so I don’t have to worry. Also, my professors have been great about extending deadlines and things like that.

Friend: Wow, so you can just turn things in late without any repercussions?

Me: That’s not exactly how it works…

Friend: Well, I mean, I’m glad you have great professors, but when I hurt my leg they weren’t so accommodating. I had to sit through entire lectures nearly in tears it was so bad, and they didn’t care.

Me: You should have stood up for yourself! My experience has been relatively positive with the Disability Office, but it does take a certain amount of self-advocacy. I’m really sorry though.

Friend: Well, as long as you’re getting extra help, that’s all that matters.

___

This conversation may seem innocuous upon first glance, but the tone of my friend’s voice was accusatory and defensive. A temporary injury can be jarring while in college, but it certainly doesn’t compare to the emotional and physical strain of a chronic illness, and although I am sorry that the DO didn’t address her pain adequately, there are reasons why they are taking my case much more seriously. Additionally, the idea that I’m getting “extra” help is not helpful for my unrepentant feelings of guilt, but my good friend reminded me that the University system is designed to support its students in any way possible. Pre-med students get special advisors, pre-law students get pre-law societies and teas, and there is no reason that I shouldn’t be receiving the kind of support I needed to put me on a level playing field with my peers.

Truly, that is what disability services offers: they even out the playing field so I can play, work, and learn with the same ease of my classmates. Other students get to choose their hardships: they pull all-nighters and get to complain about being miserable for the next two days, they pile on the course load, knowing that come midterm season they will be a bundle of nerves and raw energy. Disabled students don’t get to choose their hardships. We have hardships thrust upon us, and there is no reason that we shouldn’t get the leg up so that we have the opportunity to make our lives difficult–on our own terms.

{NHBPM Day 5} #ListOf3 Things I’m Thankful For

  1. Friends who care. Whether online or in real life, I have been blessed by incredibly caring friends who make sure I’m ok. While sometimes they don’t exactly say the most appropriate things, their caring is genuine and I appreciate that more than I can express in words.
  2. The abilities I have. I may be slowly becoming disabled in my body, but my mind is fully intact. I am thankful for the ability to talk, write, and eat on my own. I can still sing, and although I have to schedule hanging out with my friends strategically because it’s so draining, I have friends to hang out with.
  3. My family. Although my family can be frustrating, I love them to bits and wouldn’t trade them for anything.

{NHBPM Day 4} What’s in your backpack every day?

Last week I went to the library with my adviser to grab some books on the woman I’m studying, and she remarked that I was carrying quite a heavy-looking backpack. I laughed and sort of sighed, not ready to go into why I have to carry my backpack with me everywhere (I didn’t bother to mention that it actually isn’t that heavy, and that actually if it were heavy I wouldn’t be able to lift and/or wear it).

But now I get to tell you all what’s in my backpack! And I’ve added pictures!

Tiger Balm pain patches, Joint Relief gel with arnica, and my all-time favorite Badger Arnica blend Sore Joint Rub

Arnica is my hero. If something says Arnica on it, I will snatch it up because it is magical. I first discovered arnica when I had my wisdom teeth extracted, and when we applied a salve to my cheeks they didn’t even begin to bruise. I kid you not. If I’m too achy to go to sleep, I reach for whatever arnica-containing magic is closest to my bed and smooth it over my joints (fingers first, so they get taken care of while they’re taking care of the other joints). It reminds me of the eucalyptus spearmint muscle-soothing lotion my mom used to rub on my aching joints every night when we thought it was just growing pains (note to future parents: growing pains should stop at around age 10. My “growing pains” brought me to tears every night for 18 years, and now we finally know the cause).

Tiger Balm is very similar, and just as magical. I put a patch on my most troublesome shoulder when the salve combined with pain meds just won’t cut it so I can go out into the world and be mobile. The only downside to these patches is the price, but I splurge because they stay on better than the store brand equivalent (although to be fair, even the stickage on these could use a little work).

Two pairs of compression gloves and a roll of waterproof Nexcare tape for fingers.

I recently started wearing compression gloves almost constantly and they have made a world of difference. The problem with EDS is that once you brace one joint, the joints around it tend to overcompensate and then they start to need bracing. That’s what has been happening with my wrists: I immobilize them, and my fingers have to do all the work and have moved from simply hyperextending as overcompensation to subluxing and then, as of this morning, to dislocating.

These gloves provide compression and warmth to my finicky fingers and apparently make me look tough. I’ll take it.

Unfortunately, they only go up just past the second knuckle, and my first knuckles are the ones that are typically the least stable. To help with those, I keep a roll of waterproof bandage tape in my backpack and wrap it a few times around the joint to help support it. This kind of tape doesn’t bother my skin because it’s latex-free (I have a latex allergy. Didn’t I tell you? Right, right, I can’t keep track of my mounting allergies either) and since it’s meant to go over wounds, it peels off easily from my stretchy skin.

Elbow brace, neutral compression arm sleeve, and a variety of wrist braces.

I’m usually wearing some or all of these items, and usually on both sides, but I do like to carry extras if I can just in case something happens (like that time I spilled hot chocolate all over my wrist brace… Seriously though, for klutzes like me these things are incredible life-savers like that!). The blue compression sleeve is wonderful for days when my elbow isn’t bothering me very much, because it provides neutral warmth, which is actually magical. Neutral warmth (as explained to me by my incredible mother) dampens hyper-irritation caused by chronic inflammation of nerve endings, thereby reducing pain! It also is generally quite soothing and provides your nerves with a sense of stability, regardless of how much stability garments like this sleeve provide. It’s essentially the same phenomenon as babies who like to be swaddled really tightly, only on a smaller scale. In addition, light compression found in things like socks helps maintain your body’s resting temperature which prevents the exacerbation of aches and pains. Love it.

A selection of knee braces and an always-ready emergency sling.

Last but not least, I give you a few of the knee braces I wear and carry with me, depending on the day. I do have some bulkier ones, but my kneecaps are so hypermobile that I really only use braces for that neutral warmth phenomenon since anything that restricts my patella’s range of motion will actually cause morepain than it does when it subluxes.

I also make sure to always carry a sling with me, because my shoulders have recently been acting up. I’m so ready for this upper-body flare to be over, especially since today I dislocated my shoulder just standing at a crosswalk, and a block later my right patella subluxed, and then my right ankle subluxed. At any rate, I was glad to have my sling so that I could temporarily fix that problem before attending to my right leg, and that prevented me from causing any more pain to my shoulder! Excellent!

 

So that is why I carry around my backpack everywhere: the front pocket is for bracing and other supplies, and the back holds my books and laptop. I haven’t included my ankle braces because I wear them all the time, and my meds are sort of a given so I didn’t bother taking a picture of those (though I have seen some rather artful pictures on Instagram of all the meds you spoonies are on and I may have to give that a go one of these days!). I’ve turned into an armed warrior lately, and although the braces put people off (especially the hand/wrist ones) I’m slowly learning to reshape my self-image to include the braces so that I can carry on as usual and forget the stares.   I haven’t seen anyone from back home since my “transformation” (in high school things weren’t this bad; I’ve only had to include my armor as part of my daily wardrobe for the last two months or so), and I don’t really want to. I don’t want to explain. I’m ready for this to be my norm, for me to stop having to answer questions from classmates, professors, or even strangers. Do they ever stop? I’m crossing my fingers (not literally).

 

{NHBPM Day 3} A Conversation with a Doctor

I have already written about a very disappointing sequence of conversations with my doctor(s) here, so today instead of copping out and just giving you that link to read a very long, very winding, very stream-of-consciousness post that I needed to get off my chest one day, I will instead write about a magical, imaginary doctor’s appointment that I hope to have one day.

The scenario I always imagine in my head plays out like this: I’ve spent a good hour or two a few days before the appointment brushing up on my research on EDS and other conditions that have the same symptoms I’ve been experiencing, and I’ve compiled a packet with all the relevant information highlighted and annotated (I really do this. Overkill? Potentially.). The day of the appointment, I am sure to get there at least 15 minutes early on the off-chance they are running ahead of schedule and I can get an extra few minutes with my doctor.

I hand over my packet to my doctor when she asks for my oral history, as a way to supplement and complement the disjointed narrative flowing from my mouth that never sounds the way I’ve rehearsed. This time, though, I hit all of my major points: new developments since my last appointment (new areas of pain, dislocation, or hyperextension; recent dislocations or subluxations), improvements, and medication updates. Even though I’ve been thorough in my oral history, the doctor takes a moment to read a few of the highlighted pages I have pointed out to her that might help us as our conversation progresses.

The doctor then asks me how my life is going. How am I feeling? How am I handling any new changes or alterations to my lifestyle? Am I satisfied with our current treatment plan?

And then.

WAIT FOR IT.

And then the doctor listens to my responses.

Ah, yes. Listens.

The doctor listens, possibly jots down some notes when she has an idea for how to fix a problem I have named, and then takes a deep breath before responding.

That deep breath will enable her to clear her mind from the day’s appointments, and focus on the problems at hand. I don’t mind being a puzzle, I really don’t, but I don’t like being a puzzle piece. Think of me and my symptoms as its own separate puzzle; don’t approach my case as one of all the other puzzle pieces from the day’s–or week’s–giant puzzle that is the life of a doctor.

So after this breath, the doctor will propose some solutions to my problems, and together we will pick the one that works best for me at that time. Maybe that will involve more tests, maybe a new specialist, or maybe just a new brace, but we will have decided together.

And then I would like to schedule a follow-up as soon as is reasonable to make sure that this new solution is working or to share progress updates.

What a crazy, incredible dream that appointment would be.