So you've just been diagnosed with Dysautonomia...

One of the things that's difficult about getting a Dysautonomia diagnosis is the lack of information available. After being sick for a few years, I realized that I went a really long time without knowing some pretty basic things. Dysautonomia resources are scattered and can be difficult to find, and while I'm not sure how much a random blog post is going to help, I thought I'd share what I've learned in the 5+ years I've been sick.

Everyone has different experiences with Dys and the following advice is based on mine (please don’t hesitate to add to, question, or contradict any of this in the comments!), but I hope this is useful for some people.  Without further ado, some Dysautonomia advice for the newly diagnosed:

1) Educate yourself about Dysautonomia, POTS, and/or whatever else you’ve been diagnosed with.  You don’t have to know the intricate details of how your body is functioning, but people are going to ask you about it, so it’s good to know the basics.  (I usually tell people that Dysautonomia is a malfunction of the autonomic nervous system, which controls involuntary functions.  They don’t know what that means, but it sounds like I do.)  Additionally, know the names of the meds you’re on and the dosages.  If this is an impossible task (I have been known to write messily on forms to cover up such forgetfulness), have it written down somewhere and bring the list when you see a doctor.

2) If you’re in school, get yourself some accommodations.  If you’re K-12, this will be a 504 plan.  Depending on your symptoms, you might need to arrange for home-hospital (if your school system does this).  There are a whole host of accommodations that Dys kids require, but here are some of the more common ones: extended time, flexibility with deadlines, ability to eat/drink in class, permission to take breaks as needed.

3) Carry a water bottle everywhere.  Do you have a reusable water bottle?  Fantastic, meet your new best friend.  For taking meds and keeping yourself hydrated, you never want to be without a water bottle.  I have various sizes to fit in various bags (and various bags to accommodate the size of water bottle I want to bring.  It’s a whole system.)

4) Get compression stockings.  Yeah, they’re a pain in the ass to put on, but they help with blood pooling and will make you more energetic/less prone to passing out.  You can usually get prescriptions for medical stockings, like Jobst, which insurance will cover.  I also like Spanx for shorts wearing/warmer weather.  Make sure to get some that cover your stomach, which is prime territory for blood pooling.

5) See a physical therapist who knows how to help Dys patients.  In addition to the deconditioning that you want to counteract, your nerves are likely all kinds of tight and doing PT will help loosen them up.  Granted, not everyone has the stamina for this.  If that’s the case, doing even just the tiniest bit of exercise will still help.  Walk around your house a few times a day or to the end of the block and back, if you can.

6) Sleep!  Also known as don’t stay up late on the internet every night.  It’s super tempting to do so, especially when you can sleep in the next day, but having some semblance of a normal sleep schedule will help you feel better.  If you sleep in late every day, you won’t get meds/food/water into your system until later, which will generally make your day shittier.  If getting up by 9 or 10 isn’t an option, wake up around then, eat a few crackers, take your meds, and go back to sleep.

7) Attend to your emotional health.  Being sick can be incredibly lonely, and sometimes it feels like they’re nothing you can do to fix that.  But there are small steps you can take to boost your happiness, whether it be rewatching your favorite TV show or creating the perfect driving-to-doctor’s-appointments playlist or devising semi-elaborate pranks to pull on your family members.  During bad stretches in high school, I would try to do little things that felt productive, like writing letters or knitting a scarf.  Even on the worst days, I always open my blinds because natural light really does make a difference.  As for friends, some will split at the first sign of trouble, but others will stick around.  Ideally, they will reach out to you, but good intentioned healthy people don’t always know what they should be doing, so you may need to ask them to hang out.  And finally, depression is a real factor here for a number of people, sometimes as a side effect of meds, sometimes as a result of isolation, and sometimes as a pre-existing condition that is exacerbated by the loneliness of Dys.  Don’t be afraid to reach out if you need help.

8) Pay attention to what you eat, and how your body responds.  Some Dys kids develop allergies along with their other symptoms.  I'm gluten and dairy free, myself.  It’s incredibly annoying to close-read every label, but I have more energy now that I’ve cut those foods out of my diet.

9) WRITE EVERYTHING DOWN.  This is basically me yelling at myself here, because I’m so bad at doing this.  But seriously.  Take your BP and pulse every day, and write them down.  At the end of each day on a new medication, record how you’re feeling.  If you’re having trouble sleeping, keep a sleep journal.  Your doctor will ask you how often you get headaches/stay up past two/what your BP was last Sunday and you think you’ll remember but you (or at least I) never, ever do.  The more carefully you keep a record of how you’re feeling/what your body is doing, the better your doctors will be able to help you.

That’s it!  I’m sure I’m forgetting things (let’s have a round of applause for brain fog, shall we?), but these are some basics.  I know lots of people have been dealing with Dys for a while and know all of this, but new people are diagnosed every day, so I hope this is helpful for someone out there!

Why I Hate Person-First Language

There are a lot of people, usually able-bodied, who use person-first language (i.e. "person with a disability" instead of "disabled person") because they think it's progressive. It seems especially common with parents of disabled children, occupational therapists, and others who interact regularly with disabled people but are not disabled themselves. It's unfortunate, because person-first language is actually incredibly ableist.

Person-first language perpetuates the idea that disability is bad, by suggesting that disability can and must be separated from someone’s humanity. Disability doesn't work like that, though. When I say I’m disabled, I’m saying that my disability is part of who I am. It’s part of my identity. Calling someone a disabled person isn’t saying that their only identifying factor is that they’re disabled, any more than describing someone as a woman or as queer would indicate that those identities encompassed their whole self. 

Disabled people are always warned not to “become” our disabilities, but it’s really a warning against embracing that part of our identity. What they’re actually saying is that they don’t understand how disability could be positive. They’re saying that disability is bad, that it’s not really part of who we are, that it’s a separate entity keeping us from our real selves. And that is not true.

I know there are some disabled people out there who prefer person-first language, and I will of course respect what people want to be called, but before able-bodied people go around patting themselves on the back for using person-first language, they should consider what their words imply.   

Traveling

I've been in New York this week, first staying with a friend from home in her itty bitty Bushwick apartment and now visiting a friend from school at his house in Park Slope.  I've had a decent amount of energy, but the thing about traveling, especially in a group, is that everyone wants to do everything all the time.  There are five of us staying at Arthur's place, and while they are wonderful friends who are very understanding about my illness, it's still difficult to constantly have to be the one to ask if we can sit down for a bit or grab some food because I'm feeling lightheaded.  Spending all day running around the city has also underscored the problems with being far from a bed/couch/other space to lie down.  I nodded off in a bookstore chair the other day, but with orthostatic intolerance, the quality of rest is tremendously better lying down than sitting up.

It's also been a little stressful dealing with symptoms at Arthur's house.  At home, in my dorm room, or at the house of a good friend or relative, people know the deal.  They understand why I need to rest, and I don't feel awkward taking a nap on the couch or taking a break to lie down.  I only met Arthur's mom a few days ago, though, and I hadn't gotten a chance to explain the whole chronic illness thing before I found myself wiped out and needing to spend the day in bed yesterday.  I was actually able to talk to her about my Dysautonomia last night, but that was after I had been resting all day.

I go back and forth on the judgement thing. On the one hand, if I don't jump to give up my seat on the bus and get dirty looks, I've gotten to the point where I am prepared to accept people's ignorance without launching into an explanation.  But when it's a friend of a friend, or a parent of a friend, or a classmate, or someone else I might see again, I feel an overwhelming need to make sure they don't think I'm lazy or selfish.  If it's a situation like the one yesterday, I feel pressure to act better than I feel.  Even if I had been feeling terribly last night I wouldn't have asked to eat in bed, because that would have been too awkward.

The other worry this trip has caused is that traveling in Europe will be incredibly stressful.  I'm studying abroad in Italy next semester, and I've been looking forward to taking weekend trips, but my experience this week is making me anxious.  Traveling without a plan seems like the thing to do for young college students, but is that going to leave me exhausted in the middle of a city where I don't speak the language?  What if my travel companions (who I'm assuming will be people on my program, none of whom I know well now) want to do more than I am able?  Will I hold them back?  Will they pull me along when I'm feeling miserable?  I am choosing to remain optimistic, but there are concerns.  There is one thing I can bring to the table as a travel buddy, though: I will make sure we never skip a meal, because if we did I would basically collapse into a puddle of goo. 

Hello out there

The thing is, I've been thinking and talking about disability for a while now, and I don't have a singular place to keep these thoughts in order.  So, hello.  Welcome to that place.  I'm Maddy, I'm 20, I'm from the DC area and attend college outside of LA, and I have a chronic illness called Dysautonomia.  I came to the online disability community through tumblr, but I don't want to use that as a public blog because people who are interested in disability and/or Dysautonomia may not also want to know how much I appreciate the Bel/Freddie relationship on The Hour or share my significant enjoyment of hedgehogs.  I also help run the Young People with Dysautonomia tumblr, but that is not a personal space.  I have a twitter, but I've been jonesing to do some actual writing lately, so that is no longer sufficient.  Thus, this blog.

I've been sick for over five years now, since the beginning of my sophomore year of high school.  I didn't really go to high school after I got sick, taking classes at home for the most part and spending most of my days in the basement watching tv.  I started college part time, eventually going to full time as my health improved.  I've certainly gotten a lot better over the past five years, but Dysautonomia and its accompanying gifts (fatigue, brain fog, orthostatic intolerance, etc.) are still a very big part of my life.  I started a student organization called the Disability, Illness, and Difference Alliance (DIDA) last spring with some friends, and have spearheaded that effort ever since, facilitating discussions, meeting with administrators, and generally doing whatever I can to make disabled students and our concerns more visible on campus.  I also did an independent study in Disability Studies last semester, which was an incredible experience that only increased my desire to fight for disability justice.  Disability advocacy is looking more and more like what I want to do as a career, which is an exciting prospect.  I feel so much better about myself and my circumstances since I started learning about disability in a social, rather than purely medical, context, and I want to both extend that empowering feeling to others with disabilities and raise awareness in the general population.

I'm not quite sure what this blog is going to look like yet.  Right now I'm imagining a smorgasbord of my personal experiences with illness, thoughts about disability issues generally, and maybe some chronic illness advice.  Having begun to study the systems of oppression behind disability, I'm not really a "doctors always know what's best for you" or a "just talk to your professors, and everything will be ok in class" type of a person, but I'm committed to finding a balance between healthy anger at the way disabled people are treated and overall happiness in my life.  I guess we'll see how it goes!