As I wrote in my previous post, my rheumatologist had to take unexpected medical leave and cancelled all of his appointments suddenly – which he could not help – but he left WITHOUT providing another physician to cover for him. As my medications ran out from what was to have been my June 29th appointment, I descended into an ungodly pain-related CRPS crisis as well as my RA flaring and dealing with the “discomfort” of walking on my feet with their chronic stress fractures in each and every metatarsal. This has been an absolute nightmare scenario for an autoimmune patient who needs to avoid stress and medication changes to prevent flares of my conditions.
I have so much to report on this since my last post, both about the specifics of how I have been treated as well as my thoughts on how this affects the spoonie community as a whole – and I will share them shortly.
First, though, this is especially on my heart because we have had a terrible loss in the disability community – that is directly related to someone unable to get appropriate treatment for her pain as well as proper healthcare in general with her disability. It is just heartbreaking and we must talk about her life as well as her untimely death on July 7th.
(I feel deeply that these are all related issues – and oh so important.)
Erin Gilmer was a prominent disability advocate. She was an attorney who eventually became unable to work due to her many health problems, which included Type 1 diabetes, rheumatoid arthritis, celiac disease, neuropathy, occipital neuralgia, migraines, endometriosis, and severe chronic pain resulting from injuries from having been hit by a car. She also dealt with depression and diabulimia that she had a great deal of difficulty getting treatment for (more on that in a bit as well).
Before we talk about the circumstances leading up to her death at only 38, to understand more about her life and work in the disability community, here is the New York Times obituary written for her:
Another lovely article about her life and work is here, from Healthcare IT Today – and it also has a link to her Stanford Medicine X talk – but her talk is so honest and heart wrenching that I am going to link it separately as well:
Lessons Learned from a Fierce Patient Advocate, Erin Gilmer
Please do take a moment – literally three and a half minutes – to listen to her talk here. Her story is painful and powerful – and it will help to better understand the rest of this post:
I am just sick over her loss – and even more so with my experiences in the past weeks. Her suffering was completely unnecessary and her death was preventable – as she struggled so greatly with the medical community, wrestling with intractable pain and no relief in sight, something I’ve borne witness to firsthand as of late.
First understand that Erin was a survivor of trauma, initially related to her family life, to the extent that she severed her relationship with them at age 19, also the same age at which she would be diagnosed with Type 1 Diabetes.
Because of her own history with trauma, she was a fierce advocate for what she called “trauma informed care” for chronic illness patients – which I can certainly attest to the desperate need for – as well as dealing with “betrayal trauma,” where the chronically ill patient is completely failed by the healthcare system meant to help him or her. These issues are rampant in the spoonie community, as Erin fought them constantly, I have been in hell dealing with them these past weeks, and all of the chronically ill patients in the rheumatology department at a local hospital have essentially been abandoned to them as well.
After her diagnosis with diabetes, she began developing other physical health issues as well as mental health issues. She already had a history of disordered eating and the insulin induced weight gain lead her to a condition commonly called diabulimia – but classified as an ED-NOS (eating disorder not otherwise specified) until recently. With diabulimia, the sufferer does not take their insulin, leading to weight loss, but also incredibly high blood glucose and a host of other complications (and it is immediately life-threatening). As a result, she suffered neuropathy – contributing further to her pain – and was still fighting her eating disorder at the time of her death, as she mentioned on July 3rd on Twitter the difficulty she was having getting treatment.
(For more complete information on diabulimia, here is the link to the fact sheet she created on her blog: https://healthasahumanright.wordpress.com/2017/03/03/diabulimia-primer/ )
She experienced multiple suicide attempts related both to her pain and the incredibly difficult circumstances she was facing as she became unable to work and had no family support.
Here she wrote about her year of homelessness:
Even when a friend helped her obtain housing, she was living on $800 per month and $150 of SNAP food benefits with no health coverage – as a diabetic needing insulin. She was truly in an ungodly situation.
(Yet, still, whenever she was able, she continued to advocate and work on behalf of the disabled. Bless.)
Reading through her Twitter feed is devastating. There are many advocacy posts – with a very long suicide note interwoven through it.
Though she is transparent about her mental health struggles and her suffering throughout the feed, there are several posts that I would point to in the weeks and months leading up to her death that are particularly painfully telling.
Beginning with Celiac Awareness Month, on May 10th, in response to someone posting that celiac disease basically did not have to be a major life obstacle, Erin posted that she did consider it to be “tragic and life limiting” in the way it had affected her. She was struggling with its requirements – as one of her many diagnosis. (Especially on a fixed income, celiac disease is a challenge – and yet another expense.)
Then on May 12th, she would post that what she was living was “not a life,” and that she wished she lived in the Netherlands or Belgium – where assisted suicide is both legal and common among the chronically ill.
These types of brutally honest posts were not unusual for her at this point as she was suffering terribly. However, on May 16th, she decided to just spill – for lack of a better way to say it – and write a long thread, venting as to what she was experiencing. Rather than summarize, I want to let her speak for herself:
I’d rather focus on so many other things than myself. Pain turns you inward and it’s so hard to get out.
None of this is okay. And I’m not sure what good sharing any of it will do, but something in me told me to write, so here we are.
There’s no way through any of this and no way out of it. I’m trapped in a mind and body that feel like literal hell. And nothing I do or try can make it better. In fact, the more I try, the worse things seem to get.
So much of this never had to be. There were cruel PCPs who made me too afraid to seek care. There were cruel surgeons who judged me and lectured me about my diabetes and trauma. There were cruel hospitals and administrators. So much cruelty in health care.
The future for me is: losing my cats (one to the brain tumor, the other is getting older), losing my teeth (to be reminded of horrific abuse every time I look in the mirror), losing my ability to function without excruciating pain, losing more people who find it all too much.
And none of it is going to get better. I’ll be losing my tooth to a rare disease process that’s caused an infection in my head. No one can stop it. The trauma related to my dental care is unique and tied to the very earliest abuse I knew. It’s devastating.
I’m so alone. Doctors hate me for being too difficult for my defensive reactions triggered by trauma they refuse to understand. I’ve lost friends because over time, I’ve become the worst version of myself imaginable. I am empty and a shell and so very broken.
And I don’t have any help. I don’t have family. I don’t have any friends who live near who can help. No one to check in and bring a meal or help me take out the trash. No one to offer a shoulder to cry on when it gets too much. I’m alone.
There are the low level things like eczema flairs and allergies that add to the nonsense. There’s the hip pain and tinnitus and undiagnosed GI issues that would make life hell even if everything else were fine.
There’s the torn meniscus in one knee as well as the strained ACLs in both. There’s the occipital neuralgia and the cervicogenic headaches that never go away – they’ve been around for over a decade every. single. day. There’s my untreated asthma and protruding discs in my lumbar spine.
These are just the truly awful things but there’s so much more. There are the endometriosis days where I would gladly cut out my insides, the pain is so intense. There’s the arthritis pain in my hands and feet and elbows that’s never been properly treated.
In the midst of this, one of my cats has a brain tumor. He has had 2 grand mal seizures and I’m told he could go at any moment. There’s nothing I can do to stop it or make life better. I was told we might have 2 months, we’ve had 6. Every day I’m terrified will be our last.
Things have only gotten worse since then. But the latest surgeon told me my case is too complex and they can’t help me. I’d gone to them hoping to avoid an ER but their advice was to go to the ER if my pain was so bad. So I did.
The ER did nothing to help me. Pretty sure they labelled me as drug seeking and wrote me off. They did run another MRI but the radiology report doesn’t match up to any of my previous imaging. It was all just more trauma for nothing.
As my arms have gotten worse, I went to see a spine surgeon. I was supposed to have surgery in 2018. That surgery was cancelled with horrible cruelty b/c I asked for trauma-informed care (or as the hospital cited: they didn’t have the fiber gummies I sometimes take). . .
But as I’ve reached out, more and more in despair, I’m told I’m too “taxing” – as if this is so hard on *her* and not completely devastating for me. Because, as always, it’s the doctor’s emotions and wellbeing that matters most. . .
The neurologist has tried hard to help. She’s tried different med cocktails and now we’ve ordered specialized tests and genetic tests. She tried to order at home PT for me (which failed) & she did get me back on some meds I’ve missed for lack of PCP.
The rheumatologist who dismisses my pain at every turn. When I developed adhesive capsulitis, he said I was wrong. Took me months to finally get the imaging I needed that proved I do in fact have adhesive capsulitis and months more trusting finding someone to help –
By then, I couldn’t have the procedure needed to address it and my other issues started to get worse. The rheum did run MRIs. But then slung me back to the neurologist. It’s clear he doesn’t believe this pain either. – Erin Gilmer, 5.16.21
She was in excruciating pain, alone, and disbelieved by the doctors who were supposed to help her.
Through the remainder of May and throughout the month of June, she expressed great loneliness and pain, writing that she needed “in person people” and stating several times that her pain was “unsustainable.”
On July 7th, she wrote again, among other things, that her pain was “not survivable.”
She also again expressed unbearable suffering that was not believed or helped by the medical community.
Then she posted this, her goodbye note:
And she was gone.
This did not have to happen.
There already existed a terrible problem with chronic pain patients being undertreated and not being believed. Then the new misguided “war on opioids” came along – and hell broke loose for so many.
I would encourage all of you to read this article from Scientific American:
One point it makes well is that chronic pain patients are NOT being treated appropriately – with dire consequences – while the primary actual overdose problem – street fentanyl – is still running rampant. So this policy has only caused further harm.
Losing Erin would have been terribly painful no matter what – but it has hit me especially hard as I have been fighting my own battle in the past weeks, seeing total disregard for ongoing care, for management of my illnesses and pain, and a total lack of concern for my general wellbeing. This was not directed at me personally, but rather also involved every single patient in the rheumatology department of a large clinic in my town when the rheumatologist became ill with no one on call.
We were left to fend for ourselves.
And since I last wrote about it?
Something more infuriating came to my attention. Something I just CANNOT believe.
See, as I wrote, our entire group of patients were left without a physician, at the mercy of a medical assistant and a receptionist. As my meds ran out, I was truly in crisis – and I started calling every day, leaving messages for this medical assistant – because I had to have some kind of help.
(Despite the attitude of some of the medical community, we spoonies CANNOT abruptly stop our medications and just somehow manage. . . )
On a Monday, I left a message with no response.
On Tuesday, I called and left a message with no response by lunch so I called and talked to the receptionist – who told me the medical assistant was covering for another physician whose nurse was out – but she would call me back as soon as possible. (Of note, the receptionist was pretty damn rude about this.)
On Wednesday morning, I left yet another message – and finally got a call back at 9AM.
I explained everything AGAIN to this medical assistant and told her that I understood that my doctor did not have an on-call but that I was in a terrible situation and I found it hard to believe that there was not a physician there who could help in an emergency. She began reviewing my medications and then decided I should have another month’s worth of refills left from my last visit. Of course, I did not – she was miscounting. Still, she said she was going to call my pharmacy to verify this and call me RIGHT BACK.
By lunch, I had not heard back – so I called my pharmacy. They never heard from her.
Again, I left her a message to please call me. No word on Wednesday afternoon.
No response to the message I left on Thursday or Friday either.
Clearly, once she got me off the phone Wednesday morning, she was done.
Still, to document that I had tried, I left another message on Monday – and, lo and behold, this medical assistant was off – and someone was covering for her. Someone who was returning calls and actually trying to help. Someone who listened to everything that had happened to me. Someone who was willing to TRY to help.
And this person?
Jumped through many hoops – and obtained my most urgent meds to get me through until the physician returns.
Oh. My. Word.
Of course I am profoundly grateful – and will report to everyone I can find just how much this person helped me.
I am also so so pissed off. I am still in a full flare, collapsing and sleeping for hours and hours at a time, my face throbbing with CRPS pain, having no idea when this will end – all because the medical assistant who spent a week screening my calls COULD have helped me in the first place and chose not to.
Why I don’t know.
What I DO know is that it has caused real harm to me – and is causing real harm to other patients as well.
The attitudes all the way from the very top – administration at this clinic – to the office staff, indicating that they are not concerned with the extreme distress and severe pain of their chronically ill patients is beyond upsetting.
Treating patients this way has terrible consequences both for their physical and mental health. It is not ethical. It is not fair. It is not decent.
Seeing what has happened to Erin and knowing what I – and other patients – have been through these past weeks at our clinic, I am so damn TIRED of begging for appropriate care. It should never be this way.
A cardiologist would never tell a patient to sort out congestive heart failure on their own.
A nephrologist wouldn’t suggest someone dialyze themselves at home.
And those of us who suffer from debilitating autoimmune conditions and chronic pain sure as hell don’t deserve to be left to plead for help and fend for ourselves either.
It’s time to do better. This is literally costing lives.
Be well, everybody. Take care of yourselves and each other.
Grace and Blessings.
*Also, as this has been a heavy, heavy post – if you are struggling with chronic pain (or anything else for that matter) – help is available. Please reach out. As always, a list of resources is available here on my resources page:
And a big P.S. . .
What keeps me going, even during these crazy crummy doctor weeks is this. . . ❤