Dear Medical Professionals

I want you to know your dedication, passion, and intelligence doesn’t go unnoticed. As a disabled young adult with complex conditions, I have had more interaction with you than my peers, my parents, and their parents. My life has been saved by you and your peers countless times and your knowledge, compassion, and care has given me the opportunity for a life outside of the hospital. For that and many other reasons I am grateful. In the many hours of I have spent interacting with all of you, I feel as though I get to know many of you well. From that, as well as my experience working in the medical field, I write to you this post in hopes that you hear me, the me that is uneffected by my social anxiety, acute medical condition, or time. I hope that some perspective is gained from this but at the very least I hope you read it and know that I am still here with the same appreciation for who you are and what you do.

I have several complex medical conditions, many which lack education and understanding within the medical community and some which are vague/hidden enough that by their clinical presentation could be any number of things. I have issues that present “atypically” “weird” or “just don’t fit” with the models you were trained on. It is very annoying by the way. I have been misdiagnosed, mistreated, and misinterpreted more times than I can count. (For a great article on that, read this!) I am thankful that over time, more knowledge and direction has come my way and we now have a decent understanding of what is “wrong” with me (though of course there are still plenty of mysteries). Due to my experiences, I struggle in how to approach new providers. Yes, I have anxiety but this is more than that. Ultimately, with each new interaction the thought that runs through my head, and many of my chronically ill friend’s heads, is how do I need to act/present things to be taken seriously but not be flagged as crazy, too knowledgable (yes, unfortunately thats a thing), or disrespectful of the professionals knowledge/training. Interacting with you comes in two forms for me, voluntary or involuntary (emergency situations) but both come automatically come with the same calculations.

How do I explain that my dystonia might not look like primary dystonia, because it’s not, but is caused by mast cell activation in the brain possibly tied with my connective tissue disorder also maybe my autonomic dysfunction and we can’t really test any of those to confirm them but this is not a new problem and from many months of trial and error we have found that treating it with xyz is most effective even though that contradicts the treatment for primary dystonia but yes, I know this its just not primary dystonia and I can’t prove it and I can’t show it to you but I have world renowned specialists helping me navigate this impossible situation and I don’t want it to seem like I am trying to undermine your knowledge and experience as a doctor but also know that it is likely your training and experience didn’t cover this because the human body is so complex and more and more diseases and processes are being discovered every day so how on earth could we train humans to know all that and be able to draw upon it at a moments notice in order to treat a patient quickly, safely and effectively?

In my mind, I try to judge who is open to the fact that they can be a great doctor and not know everything and that, in cases where people have weird, rare, or complex issues, your knowledge base might not cover what is needed to help that person and that is okay. I try and judge who might see my medical knowledge from starting nursing school, working in the medical field in many settings, managing my conditions, and just an interest as something negative or as a red flag for attention seeking, faking, or crazy. I try and judge if they might be able to see me beyond what I look like in that moment. I try and judge who might be having a bad day so that I can modulate myself as much as possible to make that day less bad. I try and judge who might get my sarcastic, dark sense of humor and who I need to be literal with. I try and judge how you will react when you get a test result back that is normal, even though things are clearly not normal. I try and judge who is reading this and thinking man, she is super anxious (yes, yes I am) or man, which doctor screwed her over that gave her this chip on her shoulder. It may suprise you that who I am today and how I approach this has been shaped by hundreds of experiences — good and bad — over more than 10 years of being sick.

I want you to know that I understand what its like to be in a stressful job where there are patterns to patient behavior. There are frequent flyers, red flags, abusers of the system. I can’t imagine how hard it would be to, especially in a setting like a emergency department, parse out who the abusers are and who aren’t. I know, especially if you’ve read this far, you care about your patients and do not want to do harm. I know the pressure to make the right decision is high and that is really hard. I hope that by sharing some of the things I got through, often before I even see you, it may help you understand patients like me.

-Your chronically ill patient

Me vs Gravity: Life with Dysautonomia

October is also Dysautonomia Awareness Month! Wahoo! Dysautonomia is an umbrella term for several conditions that result from a dysfunction of the autonomic nervous system (ANS). Many people know of the ANS from health class as being the system that is in charge of the “fight or flight” response, and you’d be mostly right. Yes, the ANS is in charge of “fight or flight” but more broadly, it is essentially in charge of regulating the automatic functions of your body. There are nine different types of dysautonomia: POTS, OI, AAG, Pandys, NMH, NCS, PAF, FD, and MSA. Learn more about them here. For this post I will only be talking about POTS and my experiences with POTS. I have secondary hyperadenergic POTS (hPOTS).

What is POTS?

As stated above, POTS is a neurological condition in which the ANS does not send the proper signals to the body to regulate blood pressure and heart rate (primarily, POTS affects the whole body). Normally, when a person stands, gravity pulls blood to the lower extremities. The nervous system senses this and sends a message to the blood vessels to constrict, sending more blood back to the heart and head. With POTS, this message to constrict does not get sent. Therefore, instead of the heart rate increasing by a normal 10 to 15 bpm upon standing, it can increase by more than 30 and can even double (when first diagnosed mine went from 68 bpm lying down to 189 bpm and remained that way for 10+ minutes). By affecting circulation, it also affects cerebral blood flow. Symptoms include orthostatic intolerance (dizziness), chest pain, headaches, GI cramps and dysmotility, inability to focus and concentrate for long periods of time, inability to read due to blurred vision, difficulty with recall, blood pooling, extreme fatigue, nausea, tremulousness, insomnia, loss of consciousness.

What causes POTS?

While there is some knowledge about comorbid conditions that are commonly seen with POTS and certain types of POTS have associated causes with the start of symptoms, it is unknown what is the true cause. For example, one type of POTS can occur post-concussion and we know that but not everyone who gets a concussion gets POTS. There is currently no cure and treatment is based on symptom management.

Common Misconceptions

POTS is caused by anxiety. POTS symptoms can mimic anxiety/panic disorders patients are often misdiagnosed or POTS is missed entirely because symptoms are deemed to be caused by anxiety. See research here.
POTS is caused by deconditioning. See research here. Exercise (for those allowed by their doctors) can be a crucial part of a POTS patient’s treatment plan but is not caused by deconditioning and cannot be cured by exercise alone.
POTS is just getting dizzy sometimes. POTS is a complex neurological condition that effects every patient different though almost all, if not all, have multiple organ systems effected.

Lingo

brain fog: cloudy feeling that hangs around and causes you to do stupid shit like flush the toilet three times, forget if you took your meds or just thought about taking your meds, and being unable to form a coherent sentence

What my POTS is like

***Disclaimer: This will by no means be an extensive list of symptoms or experiences and this is just how POTS effects me. There will also be crossover between EDS, GP, MCAD and possibly LQTS.***

I was formally diagnosed with POTS in 2015 though I had symptoms beginning in early middle school years. To save my fingers I am just going to talk about my current life with POTS and will probably do a more extensive post later, I just tired and lazy.

Remember the last time you had the flu and ached everywhere, slept all day and don’t remember half of what happened? Now imagine waking up feeling like that every day (and more! yaaay), this is one of my main struggles with POTS. Several factors contribute the fatigue including medication and adrenaline surges/crashes but on any given day my energy level is equal to or less than a sloth on Ambien. I take naps nearly daily, sometimes multiple times a day just to keep up with my peers. I have trouble filtering out stimuli, recalling things, producing speech, following multistep directions, and reading for comprehension.

Another big problem I have is blood pooling. POTS alone can cause bad pooling but with the stretchiness of my veins from EDS, it is much worse. I also have Raynaud’s syndrome so my hands and feet are always cold! The picture to the left is an example of blood pooling in my hands (on medication). This is what happens if I stand with one hand raised and one arm relaxed for two minutes. The white hand was raised and therefore has less pooling (gravity does all the work). After about a minute of sitting my legs look like my left hand. Now imagine a 11 hour car ride or a 3 hour lecture. This is why many POTSies wear compression stockings and socks to help our bodies circulate blood or why lying down with our legs up helps.

While POTS impacts many things in my life it does not mean I can’t do fun stuff, learn, and enjoy life I just need everything to slow down and take breaks. I have very limited energy and most is spent on school, existing, medical appointments, personal hygiene (showers are EXHAUSTING), and keeping myself alive. I have to worry about getting places without steps, lying down in the middle of the mall to keep myself from passing out, obsessing over hydration and medication schedules to maintain baseline and prevent things from spiraling out of control, and pretend to be a functioning adult.

Thanks for reading and make noise for turquoise (dysautonomia awareness color)!

Life Hacks: Spoonie College Edition

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So I’m actually starting my 5th year of college going straight (fall, spring and summer except one summer). I have attended three different universities and started out only minimally effected by health problems (mostly GI, migraines) and wound up here, a professional patient needing complex care and supports. While each college had different systems, strengths and difficulties, I learned some valuable things about being successful in an environment that is largely unsuited for those with chronic illnesses.

Here are some things I have learned along the way, in no particular order and not institution specific:

1. Disability services: The process towards getting accommodations is LONG, often repetitive, and stressful. Often, accommodations are generic, inflexible, and “base packaged” (you probably will get about (max) half the things you need to keep up and be successful and the rest is up to you. Here are some tips to get the most out of the services offered there (and your time and energy):
  1. Start paperwork ASAP, pester those overworked doctors to get their part in before the semester starts as accommodations will never be retroactive. Also, make copies/ scans of every form or piece of documentation that leaves your hands. Things get lost all the time.
  2. Know which battles to fight. Back to the max 50% of what you need thing, often times you will receive basic accommodation and get some pushback asking for more. Is that note taker necessary for you to succeed or can you work out a way to record lectures, ask a classmate to look at theirs, use assistive technology and save your fight for extended time on tests where you might fail without it.
  3. Send a personal note/make a personal introduction along with your formal accommodations sheet. In my experience, this has helped teachers relate to me, understand how my disabilities effect me and my learning/schooling, and also makes it seem a lot less like taking passes on things and more like “I expect this to happen, I don’t know when or where or how, but here’s a proactive heads up”. It isn’t necessary to name or intricately discuss your diagnoses to be effective.
  4. You’ll have to do a lot of accommodating for yourself/ working 1:1 with teachers.
  5. In most universities, students with disabilities have priority class registration. SUPER HELPFUL!!!
2. Housing: While living on campus may at first seem unappealing (again, varies in atmosphere by university), there can be a lot of benefits especially if you can’t drive.
  1. They are required to have ADA accessible rooms. My room has widened doors, a lower peephole, lower closet bars, grab bars in the bathroom and shower, a fold down shower bench, and lowered light switches.
  2. Accommodations for single rooms can be made for those with compromised immune systems, PCAs, MCAD, severe GI issues, and other medical reasons.
  3. You can have a quiet place to rest in between classes, are close to dining (if you eat), and have access to evening events such as clubs, performances, and hanging out with friends without being too far from home or living in the Student Union Building.
  4. DOWNSIDE #1: If you have problems that can be exacerbated by fire alarms… apparently no one knows how to cook MFing popcorn.
  5. DOWNSIDE #2: Germs spread fast and easy, may not be the safest place if you have a weak immune system without taking precautions.
3. Class Schedule Advice

1. 1. What you want isn’t always what is best. Sure, like nobody wants 9 AMs every day… or any day… but for me, the later in the day the more medication wears off, pain increases, spasticity increases, and overall deterioration occurs. Class is already hard enough to sit through, concentrate, learn and remember… don’t make it harder on yourself for a potential 2-3 more hours of sleep. Or flip all that if that’s how your body works.
  2. Register ASAP. Classes fill up, plans change.
  3. Schedule max number possible classes, attend all the first week and then drop as needed. That way you secure your seat, get to meet the professor, see the syllabus, see if there are major barriers in the class (i.e. Service dog you’re allergic to in a small classroom)
2. Medical care/ health safety

1. If you live on campus, tape a folder somewhere visible (wall, by light, dresser) and write EMERGENCY INFO on it super big and put in your medical emergency info, copy of your license/state ID card, insurance card (if you have it), and your school ID/student ID #
2. Start a file with on campus health. Even if they never care for you it is helpful for them to have your base information in case you need them in an urgent matter, have doctors far away, or just need something simple like a wound cleaned. Most student health offices will be able to do allergy shots, some will even help manage infusions.
3. Introduce yourself to the campus chief of police, especially if you have the potential for reoccurring EMS issues like seizures, anaphylaxis, diabetes etc. They are usually first on the scene and can inform EMS.
4. Wear a medical ID bracelet. Bonus if it has a way to see all your info. See my post on my system here.
5. If you have asthma, MCAD, or immune problems I highly suggest purchasing a high quality, relatively comfortable mask to wear outside around campus. I pass smokers, high perfumers, and other triggers CONSTANTLY on campus. I use these and love them (recommend the ones with 2 filters for comfort and breathability).
Miscellaneous
1. Join one club. Even if you only go twice a year, you may meet some people and you feel somewhat a part of things.
2. If you live on campus, get to know some people on your floor. They may be good for procrastination buddies, errand helpers, cards against humanity mates, or near family friends.
3. Don’t bring everything you own to move-in. Stuff accumulates anyways and it is a pain.

Hope this helps. It can be overwhelming but it IS manageable with the right supports.