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

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.

Physical Therapy

I have been in and out of physical therapy for about 11 years now. For the first five years, PT for me was limited to various joints after injury and was addressed from an purely reparative orthopedic perspective AKA they were only concerned with one joint at a time and repairing whatever injury I was currently recovering from. While this probably works for most people, with someone with a systemic musculoskeletal disorder, it wound up doing more harm than good. Because I was constantly pushing my joints without knowing it, occurring lots of damage and injuries and just overall having no idea what was going on. After dropping out my freshman year, I stumbled upon amazing PT #1. She was a rehab PT and helped answer the critical question of the time: “why, after years of PT, was I still getting worse?”. It was one of the first times anyone had looked at all of me as a functioning system that needed to be connected. I worked intensely with her for almost two years before she went on maternity leave and her practice switched to out of network. It took me a couple months to find the practice I am at now and I am forever thankful for everyone there, especially Gavin, my PT.

Younger athlete me would laugh at the seemingly stagnant pace of progress that I operate in now. She would laugh at how simple the exercises were, how slow they must be done to protect from injury, and how many little things knock me out. When I look back to all the sports, climbs, hikes, and runs I did it is almost as if it is a different person. Now I get high fives for rolling over, standing up without falling or passing out, and walking without assistance. It is almost silly to compare but at the same time, I believe it is important to know where you came from. I am making progress. I am getting stronger. I am working hard. It just looks different now.

The importance of having a PT that supports you, listens to you, and believes in you CANNOT be understated. For EDSers especially, this isn’t an area you should compromise in, trust me I have seen the damage it can do. Deconditioning, spasticity, injury, depression, general fuckitness. My PT and I have toughed it out through some major obstacles, setbacks, and flares. So heres to you, Sir Gavin the Brave for taking me on as a challenge and helping me learn to protect the function I have left and be patient with my body and mind. Seriously, I don’t know what I would do without you.

Where’s that Flintstones Chewable Morphine at?

I know I literally just said I don’t like talking about my pain and now here I am doing a post on pain. I decided I felt like it was an important enough aspect of me and EDS and since I don’t often talk about it, awareness month might be a good time for that. So here goes!

#spoonielife

I can not remember not being in pain, there may have been times where that has been the case but I thought I was normal until middle school (diagnosis backstory here). Nowadays, most of my chronic pain comes in one or all of the following forms: muscular (spasms, tears, fatigue and irritation from subluxations and dislocations), joint movements (subluxations and dislocations), mostly constant dull all over pain (I’m sure its a sign of being a demi-zebracorn?!), migraines (light sensistivity, eye strain, post-concussive issues, cervical spine subluxations, cerebrospinal fluid blockages, Chiari, position of the earth and sun, stress, lack of “good” sleep), GI pain (digestive tract paralysis, gastroparesis, mast cell activation in gut (MCAD) ), and other. Between allergies, MCAD sensitivities and Long QT Syndrome restrictions the only pain medication I can take is morphine and it gives me a lot of strange symptoms so I avoid it unless absolutely necessary. Pain management in EDS is almost always complicated due to the varying types of pain, comorbid conditions (including other pain disorders such as fibromyalgia), and severity and chronic nature of the pain. Because every case of EDS is different, what works for one might not work for another. I have zebra friends who manage pain with essential oils, some with opiates, some with PT and yoga, some with sheer willpower… everyone is different.

As EDS is a mostly invisible illness, people I meet and befriend are often shocked that I am in pain. I have learned to hide it well and have learned exactly how far I can push myself before the pain becomes too bad (though sometimes I totally disregard that knowledge). I really dislike that pain scale but on a good day I usually average a 5-6 and bad days a 8-9.5 for people who that means something to. Even well managed, pain effects your whole body, mind, and life. It does not have to control it, but it is a huge part of it.

Another thing I find people have a hard time understanding is the fluctuations or flare ups of chronic illnesses/chronic pain. This runs many into questions like “I saw you walking yesterday…why are you in a wheelchair now?” or “But last week you could unload the dishwasher, I saw you do it…are you just trying to get out of doing it?”. These questions can be prefaced either judgmentally or curiosity but are hard to deal with over and over again, especially on high pain days. Additionally, many of us face invalidation from medical professionals that impact our reactions and instincts, further complicating things. In my experience, leading a comment or question with “I want to understand but I’m confused…” usually gets a better reaction. Pain can be very isolating and can make us say or do things we don’t like. Pain sucks guys. DUH.

May the forth be with you all and beware of the revenge of the sixth!