Changing Course • This past week was Match week for medical students across the country. It has been a difficult week for me. When I Matched to my
#1
Neurology Residency Program at the University of Washington in 2021, I felt like my dreams were falling into place. 1/7
Neurosurgery: Don't sleep on your stomach. It raises your ICP.
Sleep Medicine: Don't sleep on your back. It worsens sleep apnea.
Me: How in the world am I supposed to sleep then?!
to my work. I now plan to apply for Physical Medicine and Rehabilitation residency. I am going to be one of the doctors who helps people get back to their dreams while managing their disability.
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This has been a difficult chapter, but it is not the end of my story.
@DocsWith
It's been a while since I've reintroduced myself. • Hi, I'm Jamie Wright, MD, PhD. I am a PGY2 in neurology at the University of Washington. I also have congenital hydrocephalus, chronic pain, and multiple other chronic health conditions. 1/n
A lack of disability accommodation has completely changed the course of my life.
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But that is not the end of my journey as a doctor. Instead it has given me the opportunity to pursue a specialty where I can thrive and where I can bring my whole self, disability and all, 6/7
Spending National Doctor's Day on the patient side. I'm frustrated with my brain and hydrocephalus, but thankful for my team of doctors working on a plan to get me back to residency. 1/2
I am also passionate about advocating for acceptance and better accommodations for physicians with disabilities. Disability is diversity. Physicians with disabilities have not only their knowledge and skills to bring to the table but also valuable lived experience. DMs are open.
This week is Invisible Disabilities Week, and October is Autonomic Dysfunction Awareness Month. I don't talk much about having autonomic dysfunction. Honestly, until recently, it felt like the least of my problems. I was diagnosed with autonomic dysfunction in August 2019. 1/4
Then that 6 months turned into 12 months, and now an end to my neurology residency.
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Why? Because I am a physician with disabilities and my neurology program says they can not provide the accommodations my doctors say I need. 5/7
I'm realizing more and more every day just how little the majority of doctors know about the realities of living with a disability. Even things technically within their area of "expertise". 1/2
All the hard work while fighting through hydrocephalus, daily headaches, and 11 brain surgeries to earn my MD and PhD had finally paid off. Then came 2023. 2/7
I am VP shunt dependent and I've had 18 neurosurgeries to date and live with chronic pain. I started sharing my experiences with hydrocephalus to give hope to others with hydrocephalus, chronic pain, and other chronic medical conditions. 2/n
This is the real face of hydrocephalus. This is from December 2016, when my shunt blocked suddenly, leaving me in unimaginable pain, losing my vision when I moved, shaking uncontrollably, and eventually starting to pass out any time I tried to move. 1/3
That month long medical leave turned into 6 months upon the recommendation of my neurosurgical team. It felt like a devastating blow to have to take those 6 months of leave, but I had hope that things would improve and I’d come back better than ever. 4/7
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When I left work on March 17, 2023, I thought I would be back in a month. I did not realize it would be my last day as a neurology resident on the neurology service. There were so many lasts I did not realize would be my last. 3/7
Healthcare is so clueless about the experiences of patients. This is why we desperately need more physicians with disabilities and yet medical training does everything it can to exclude them.
#docswithdisabilities
#NEISvoid
#MedTwitter
I was diagnosed with hydrocephalus at 4 months old and had my first brain surgery at 20 months old to place a ventriculoperitoneal shunt. My shunt saves my life and has allowed me to become a doctor, earning both my MD and PhD, but it is far from a cure. I have had 18 1/2
New (to me) Dr: I read over your chart. Wow, you are dealing with a lot!
Me: Yeah, it's been a long year.
Dr: More like, long life.
I am so thankful for doctors who recognize how hard it is to be a patient.
What has a doctor said to you that made you feel seen?
I once had a colleague comment about how nice it must be to have to lay in bed all day (due to intracranial hypotension). As someone currently in this situation due to overdrainage, let me tell you, it is not "nice". You just lay there thinking about your to-do list.
I will soon get to go back to residency and continue to train in helping others like my doctors continue to help me. For that, I am forever grateful.
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Be kind, always, because you never know what someone is going through. 4/4
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#invisibledisabilityweek
#autonomicdysfunction
@purplemamabear
I have multiple chronic medical conditions, including a rare disease and a life-threatening neurosurgical condition. I have about 12 different specialists, so I understand all too well.
A device with the highest failure rate of any other implanted medical device. My shunt gives me life, but it also comes with a lifetime of uncertainty. We can do better for those with hydrocephalus. 3/3
I was made to feel like a liability that could not be accommodated in my residency rather than an asset for my knowledge combined with lived experience. Medicine will not be an equal opportunity space until every doctor has an opportunity to train and participate fully.
Medical Students with Disability & Chronic Illness
Forgot to add alt text! Photo is a side by side collage, the photo on the left of me in scrubs with a doctor's badge. The photo on the right of me in a hospital gown with an external ventricular drain coming out of my head.
@DocsWith
These memories are painful to look back on, but the start of September means the start of Hydrocephalus Awareness Month. It is important that others see behind the smiling face to the realities of being dependent on a man-made device to live. 2/3
@mbulance1
This is something I've thought about a lot over the years. I struggle with trying to help my own patients navigate the healthcare system and get what they need. It is hard enough a baseline and doctors who don't listen make it so much harder.
@DGlaucomflecken
@aspiringicarus
Urgent care told me to go to the ER at 11 PM to get my eyes checked for what turned out to be a corneal abrasion. My response, "Like ophthalmology would actually come in!" I showed up at the ophthalmology clinic first thing the next morning, and they fit me in.
@Laura52872w
I don't feel like they are necessarily gas lighting me, just that they aren't listening or recognizing that I know my body and I know my conditioning more than even most other patients. They say they respect my knowledge as a patient and a doctor but they aren't acting like it.
For me, it manifests in a higher than normal heart rate, excessive sweating, getting lightheaded when standing, pre-syncope (almost passing out), and more recently, exercise intolerance. It also affects my gastrointestinal tract, causing my stomach to have trouble digesting 2/4
food the way it should, gastroparesis (also diagnosed in 2019).
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For a long time, I blamed myself for these symptoms, and I still do at times. I thought it was my fault for being out of shape, stress, etc. But with autonomic dysfunction, it isn't that simple. 3/4
I am a doctor, training to be a neurologist, and this is the device keeping me alive. I learned during ICP monitoring in March that if it were to block or stop working the pressure inside my brain would increase to over 100 cm H20 in a matter of less than 2 hours 1/n
All went well today with surgery
#23
. They got the IV in just two sticks and the additional blood draw in 2-3. Just ran late because we had to repeat my BMP. I woke up more nauseous than ever before, but they got my pain and nausea under control. Now to rest and recharge.
At the end of my hospitalization for ICP monitoring last week, my neurologist (hydrocephalus specialist) and neurosurgeon recommended I take a more extended medical leave from residency (6 months) to focus on stabilizing my symptoms. 1/n
@BaszkoM
This is heartbreaking. This is something I already stress to my own patients, but now I will try to be better about it. Just because I don't have a clear answer yet does not mean we are giving up.
@DrNicoleC
I told my residency leadership I was concerned about what I'd do if I was on call and had an "unforeseeable life-threatening medical emergency" (i.e. shunt failure). They essentially told me to plan better. 🙄🤦♀️
Me: "I'm kind of nervous about tomorrow." [i.e. having another hole drilled in my head.]
Friend: "For your doctors it is just another Tuesday."
An important reminder that when I'm working, my regular day is often one of the most difficult days of my patients' lives.
#MedTwitter
I'm finally learning to trust my knowledge of my body and my intuition, and no one listens. I'm a doctor, and still, it took over a week, multiple messages, and phone calls and getting almost downright ugly to be taken seriously. And it turns out there was something wrong.
It can be so frustrating working with people, doctors, with no clue what it means to live with disability and chronic illness. Being a doctor while living with chronic illness and disability is hard. People don't have to make it even harder!
My CSF specialist doesn't know what to do with me anymore. I spent a night in the hospital just to be told to re-start diamox (a horrible med) & to fly across the country to see a specialist
@HopkinsNsurg
for more ideas. I'm so over being a patient. Can I just be a doctor?
Last night I spun out on the highway going 60 mph. My brakes locked up and my engine stalled. I did at least one full 360 spin. It's a miracle my car doesn't have a scratch on it, and I'm in one piece. Thanking God and my guardian angel because Jesus definitely had the wheel.
I'm struggling to find the words for this past week. I'm home but not with the answers and solutions I was hoping for. I am not "fixed" or "better". So many people are telling me, "get well soon" and "I hope you have a smooth recovery". Unfortunately, when it comes to chronic 1/3
I literally have disability accommodations to have bathroom and meal breaks. Today I worked 11 hrs straight without so much as a bathroom break. And I still am not done with my work for the day. And this is a "light" inpatient rotation.
#residency
#docswithdisabilities
I disclosed having hydrocephalus in my personal statement because it is an integral part of why I chose MD/PhD. I didn't know when I applied that it would come to such a forefront in my life, that I'd go on to have 14 more brain surgeries, or that I'd require accommodations.
Are you a student or health professional with a story about deciding to disclose a disability? What influenced your decision? What should the disclosure process look like?
The
#DocsWithDisabilities
Podcast wants to hear from you!
Deadline: June 15th
I feel so incredibly lonely. It's so hard to find others who can relate to managing complex chronic illness and neurosurgeries during residency, and to make matters worse stigma makes it even harder to connect.
#MedTwitter
#docswithdisabilities
@DocsWith
#NEISvoid
@OGdukeneurosurg
Severe and/or untreated hydrocephalus. Sadly, I saw many children with heads this size during medical mission trips to Haiti with my neurosurgeon in medical school. It is truly heartbreaking. I'm so thankful for my access to care as someone with congenital hydrocephalus.
Another day, another shunt setting. To think this would have required neurosurgery a couple decades ago. Instead, I saw patients, got my shunt adjusted, then went back to work and finished my notes. Progress for hydrocephalus treatment feels so slow, but there has been progress.
I don't think people realize how hard it is to have your brain adjust to a new ICP and all you can do is hope it is the right fit for you. All while trying to live my life, despite the pain, despite the nausea, despite the unknown. Just trying to be the best doctor I can be.
Wow, thank you all so much for the massive show of support! I'm grateful for this amazing community of people who have shared my story, liked, left comments, and even reached out through DMs. Thank you for helping spread awareness of what many doctors with disabilities face! 💙
@SamariBlair
I had 12 surgeries and multiple hospitalizations during my MD and PhD years. Chronic illness wasn't new to me but having it impact my life so much was. I then had 2 more neurosurgeries during intern year. I won't say it gets easier but you can get through it! Build your team!
I miss taking care of patients. It is hard work, but this, spending most of my days in pain, wondering what the next step will be, is worse. I'm thankful for my amazing medical team, but I'm tired of living in fear that they will give up on me. 1/2
@Tuite002
I have congenital hydrocephalus with severe brain noncompliance, so even the act of turning my head or moving can cause my ICP to go up 50 cm H2O. And that's with a working shunt. But yay, neurology! I'm a neurology resident!
@bff_koo
No "just" about it! We need more representation of people with disabilities in all areas of healthcare. I'm sure you will be a great pharmacist for your patients, no matter in what setting you practice. Feel free to DM me. You got this!
I got a letter denying insurance coverage for Ubrelvy, citing that I haven't tried enough preventative meds. Someone didn't get the memo because I've tried >40 headache treatments to date...
My amazing neurosurgeon, Dr. Ellenbogen! Thank you for helping troubleshoot my recent shunt issues and for being such a great advocate as I navigate neurology residency with hydrocephalus!
@UWNeurosurgery
@UWNeurology
Doctors, imagine you are in residency, and your attending asks you a difficult question. Every time you give an answer they just say, "wrong". No feedback, no hint. You try and you try to answer, but every time, "wrong".🧵 1/4
The patient next to me when I was in the hospital needed surgery for a fracture. I was jealous. As someone with a lifelong, incurable condition, what I wouldn't give to have something plates and screws could fix.
I'm getting increasingly stressed about how I am going to pay my bills during this medical leave. Having chronic medical issues and a disability is expensive.
@garveysha
@DGlaucomflecken
I am still a bit traumatized by a surgeon during MS3 who had me be a human tourniquet during a BKA on an awake patient. He kept yelling, "squeeze tighter or he'll bleed to death" while the patient was groaning.
I'm tired of constantly having to fight for my quality of life. I'm tired of being a patient. In case you have ever wondered, no one signs up for this. 2/2
Sometimes my hand brushes against the tubing under my skin and I think, "Wow, I have a tube keeping me alive." And that is just wild to me. I'm so incredibly thankful for all I'm able to do.
#thankful
#neurosurgery
#shunt
#hydrocephalus
@Gabby_Brauner27
@andreamendez92
This is a great question, especially for someone with disability/chronic illness. The difference between how the internal medicine program intern year and how my neurology program now has managed things through 3 hospitalizations and 3 brain surgeries has been noticeable.
@GrobieLauren
@OMStoOBGYN
So very true! I don't think they always realize how much of an impact such a simple act of kindness makes. Yes, they are saving my life, but they are also doing it while recognizing my humanity.
I'm not even 40 yo and I'm close to having a doctor for every organ in my body (several for my brain alone). Is this just adulthood?
I got two new diagnoses (in two different organ systems) just in the past week alone. 😩
@ThePOTSPostman
Talk about contradictions...I'm constantly volume down due to autonomic dysfunction, so I have to constantly drink water/electrolytes. But I'm also on a diuretic for intracranial hypertension. 🤦♀️
Looks like I'm officially having my 20th surgery on Monday (neurosurgery
#16
) to externalize my shunt. Please send prayers, positive vibes, etc that we get good data and find a better shunt system for me.
I'll be moderating a talk on emergency preparedness when you have a rare disease (or any chronic medical condition for that matter). The talk will be Tuesday, February 28th at 6 PM CST/9 PM EST. It will also be recorded.
Did not expect today's appointment with my autonomic neurologist to result in a theory on why my ICP is weird having to do with POTS and abdominal pressure. I love having doctors as inquisitive as me (or more so)! 😂
Abigail Bagel is my official emotional support animal (ESA), and she is very good at her job. Every time I lay down in bed (usually due to pain), she stops what she is doing and comes over to lay beside me or lay in my arms to cuddle. Do you have an official or unofficial ESA?
hydrocephalus-related neurosurgeries to date and deal with daily intracranial pressure related headaches. I live every day wondering when my next shunt failure and brain surgery might be. 2/2
It took 5 months for my disability accommodations to finally get setup, and in the same week I am told attendings are concerned about my "pace". I'm thankful for the support I've gotten so far. But medicine is not disability friendly.
#docswithdisabilities
#NEISvoid
#MedTwitter
@LilyCrue
@ManijehAssar
I've never had the guts to break off and take the elevator. Now that I'm recovering from my neurosurgery and my POTS has gotten worse I may have to. Medicine is not friendly to disability or chronic illness.
Well, it looks like I'm going to be starting Diamox... I'm trying hard to stay positive and hopeful that this will help. I'll try to post an explanation/update soon.
Today, I'm wearing blue for
#WorldHydrocephalusDay
! • I am one of the estimated one million Americans living with hydrocephalus, a life-threatening, incurable neurological condition. The only treatment for hydrocephalus is brain surgery.
I have an excellent medical team supporting me. It is going to be hard stepping away from residency for so long. But I will be back, hopefully healthier, and better than ever!
@PeriwinkleWink
@Elzine21
As a new doctor with multiple chronic health issues, I'd argue that many disabled people have unrealistic expectations of medicine due to media portrayals as well. Far too many people expect to get answers after a single visit to the ER or doctor's office.
@itsmetheHBIC
I was standing at the foot of a patient's bed, talking to them with the team, when I looked down and realized I'd bled through my pad and scrubs. I was humiliated. No one said anything, but I had to wait until we were done to go change.