Medical trauma: a shared experience within the disabled community

I took a deep breath, put my mask on, and limped into the office.

My fingers shifted, tightening so my fingertips touched my palm, squeezing, relaxing. They shot out, stretched to their fullest extent. Some stayed that way, others shifted.

I was aware of this, but not consciously telling them to do so.

My teeth had been slamming together earlier in the day, so I already had a piece of gum in my mouth.

I chew it so that I don’t injure myself from the force of my jaw trying to slam. Just writing this, my mouth is opening and closing, but I take a deep breath and regain control.

That’s how Functional Neurological Disorder (FND) works in my case.

My limping also wasn’t due to an injury, but just another FND symptom.

I was stepping into the oncologic gynocologist’s office for a colposcopy, a biannual event for me now, and one with bad associations and memories.

This event is loaded with memories of traumatic(lower-case ‘t’) experiences.

This is how my body works: I am extremely sensitive to trauma and the potential for it.

What is trauma?

There are a few different ways trauma is described, and there is both a medical definition and a more common-usage definition. At it’s most basic, trauma is damage generally wrought by an outside force. It’s also used as a descriptor: a disordered psychic or behavioral state resulting from severe mental or emotional stress or physical injury.

Digging into it specifically from a psychological standpoint, there is a general recognition that while there are the things we generally consider Traumatic- like a severe accident, losing a child, rape, or diagnosis of a life-threatening condition, there are also many things that a traumatic(lower-case t) that can add up to cause similar damage over the long-term.

Trauma isn’t just the big flashy things that we tend to think of, it’s also caused by repeated exposure to emotionally draining or upsetting events.

My traumatic associations with the appointment

Several years ago, I tested positive for HPV and eventually developed precancerous cells that my gynocologist removed through a cold cone biopsy– the only surgery I’ve had in my life.

Pap smears(which all women should be getting regularly) were hard for me due to how reactive my body can be under stress, and the fact that I cannot prevent my movement symptoms.

The colposcopy that found the precancerous cells was very challenging for both me and the gynecologist(and poor Al(my partner), who held my hand through the whole thing).

My FND symptoms were also why I had the cone biopsy in the first place, rather than a LEEP biopsy, which was my other option(and the more standard one). My gynecologist and I were in firm agreement that I needed to be unconscious for the procedure.

When I needed the follow-up colposcopy post-surgery, my gynecologist referred me to the oncological gynecologist because she felt he’d be more likely to be able to give me the exam, given how challenging it had been prior.

I ended up seeing his colleague instead, and the appointment didn’t go well.

When I came in the first day, already nervous and mildly symptomatic, the office kept insisting that they couldn’t confirm my insurance coverage and wouldn’t let me see the doctor until they could.

It took over two hours and a lot of back-and-forths before things were resolved – greatly increasing my discomfort, anxiety, and symptoms.

Between my emotional upset and the way FND works I was extremely symptomatic(ie rocking back and forth, all the movements listed above, and likely shaking a bit too) and the doctor decided that she couldn’t give me a colposcopy then and there, and instead ordered me to do it under sedation.

This meant going to the hospital where the surgery had happened and basically scheduling as if I had another operation for her to do a procedure that most people do in the office.

Six months later, I returned to that office, but was now seeing the doctor who ran the program. Without being held up, I was much calmer when I saw him, and he was able to do the colposcopy in the office.

This appointment was a follow-up to that.

By definition, most of us are dealing with trauma

Becoming chronically ill is traumatic.

Becoming disabled is traumatic(or Traumatic in many cases).

All too often, we also face ableism or other forms of discrimination – and that alone is also traumatic(especially if you are also a minority).

Medical trauma is defined as a set of psychological and physiological responses to pain, injury, serious illness, medical procedures, and frightening treatment experiences.

The story I’ve been sharing is about a collection of relatively minor medical traumas.

I happen to have a condition that in my case is visibly reactive to stress and the symptoms are unavoidably obvious.

It’s forced me to be more aware, and I don’t really have the option that many people may have of ignoring or avoiding their trauma.

Ignoring trauma isn’t emotionally healthy, but it is very commonly attempted(with varying degrees of success). That’s part of why I want to dig into this with you.

It’s hard to not have trauma in your life when you’re disabled or chronically ill.

It comes with the territory.

Way too many of us are specifically dealing with a variety of medical traumas(and Traumas), and to make matters worse, we usually have to go back to see more doctors and receive more care before we’ve had a chance to process, let alone recover from, the prior traumas.

The medical traumas that I had to manage

Before getting diagnosed, I saw multiple urologists and had multiple catheterizations, as one of my worst symptoms at the time was urinary issues, primarily urgency, retention, and mild incontinence.

Thinking about it, I had a lot of trauma around my urinary and reproductive systems.

A urogynecologist misdiagnosed me as having interstitial cystitis, using very dubious(and painful) methods.

I had a multi-year menstrual issue, where my period lasted two weeks, with the intervening weeks full of breakthrough bleeding.

The only person I could find who might take my bleeding issue seriously after my regular ob-gyn ran out of ideas was an endocrinologist who specialized in fertility treatments.

To make matters worse, seeing him was just one trauma after another, with no actual help.

He instructed me to shove estrogen pills in my vagina(after I found that taking the estrogen orally severely increased my FND symptoms), then had me come in for an ultrasound that was excruciatingly painful(the tech refused to complete it due to my response), and after I complained of my experiences at the third appointment, he kicked me out of the office and refused to treat me.

I also had an extremely unpleasant hospital stay prior to finding the doctor who diagnosed my FND.

The worst of it was having medication pumped into my arm due to a nonfunctional IV the nurse didn’t bother to check(and getting no response on the ‘call button’ as I writhed in pain).

That medication was prescribed by a psychiatrist who decided that I was hysterical.

That week, I also was sleep-deprived, had an EEG immediately followed by an MRI with anesthesia, then had a bit of a meltdown upon awakening.

I was obsessively stuck on how nasty my hair was, thanks to the goo from the EEG.

The week ended with a nurse assuming I was suicidal and trying to put me on a psych hold the day I was supposed to leave.

I don’t have great luck with psychiatrists, as the next one I saw stacked my medications and overprescribed inappropriate medications, leading to my developing tardive dyskenesia.

Granted, these issues occurred over several years, but each to them had multiple traumatic events directly related to my medical care.

The silver linings and healing opportunities I found in these experiences

Fortunately, I was able to cope, and usually find some healing in the process.

The interstitial cystitis(IC) misdiagnosis led me to an amazing urologist who tested me appropriately.

Not only did she prove I didn’t have IC, she also taught me about biofeedback and pelvic floor physical therapy, the treatment that helped me most with managing my urinary issues.

While the reproductive endocrinologist I saw was a nightmare, his kicking me out meant that I didn’t have to see him ever again.

He mostly did fertility treatments so I suspect he didn’t like that he had a patient who wasn’t willing to suffer and who didn’t view him with awe.

Eventually, that issue sorted itself out with the combination of time and experimenting with forms of birth control.

It also reinforced that doctors aren’t always the answer.

I was able to resolve a lot of the residual pain from that nightmare hospital stay a few years ago, when I went to Louisville Kentucky for the MoRe(Motor Reprogramming) program.

It was an inpatient intensive PT/OT program with psychological support. I was apprehensive about the hospital stay aspect, but it turned out to be an incredibly healing experience on a lot of levels.

During that week, I’d adjusted my mindset around my symptoms – they were warnings and attempts at protection, something to work with, not through.

I stopped trying to move despite my symptoms and learned to pause and regain control over my body.

The staff there were exceptionally nice(it’s also possible that one piece of that was the whole living in New Jersey and being treated in Kentucky thing), and when I ended up triggering some acute anxiety in myself, the staff were just amazing to me and really helped reassure and support me as I healed.

As for the tardive dyskinesia(TD) – that was the final straw that led me to dropping the psychiatrist.

My neurologist advised a different strategy for weaning off of the drug in hopes of reversing the TD, and it did work.

I spent over a year very very slowly reducing my dosage, but I maintained muscle control in my face, so it was well worth the effort.

Since then, my neurologists have managed my medication – finding a good psychiatrist can be incredibly challenging and my mental health diagnoses are relatively simple to treat anyway.

The healthy conclusion of my appointment

Going to and staying with the oncologic gynecologist, despite the struggles and traumas I had, was the best choice for me.

Al held my hand through the procedure as the very nice and gentle doctor joked about my symptoms being worse because of the scary things he does. He was able to give me the exam without incident.

Fortunately, Al’s hand also survives the encounter, as I was squeezing very tightly- a coping mechanism that he’s willing to tolerate, though we’ve joked about the possibility of my breaking bones, now that we know how fragile he is, thanks to his osteoporosis.

It’s all good-natured joking, but there is an undercurrent there acknowledging the reality behind the jokes.

The doctor knows I’ve been traumatized and does his best to be comforting.

My partner is loving and supportive, by my side(allowed even during Covid-19 after I reminded the office about my symptoms), and I know that while my experiences have been traumatic, I am healing and the appointment is a healthy and necessary part of my own self-care.

Recognizing and managing your own traumas

If you are struggling, often psychologists can be a great help in talking through medical trauma and figuring out how to manage it.

It also helps a lot to minimize additional traumas by finding better, more helpful doctors, and going to hospitals or offices that have a better reputation. Also, sometimes the first impression really is just the result of a bad day or unfortunate timing.

I know that my experiences are relatively mild, and mostly those ‘lower-case t’ traumas. That doesn’t make them any less real, valid, or impactful.

If you’re hurt, you’re hurt, and that hurt is valid because you experience it.

Nothing else is needed in terms of it being real or your need to heal from it.

When severely traumatized, our brains and bodies can have a variety of reactions, including shutting down.

With repeated traumas, sometimes we try to force our way through it: stop listening to our bodies, push our reactions down tight, where they can’t get out.

While this can work in the short-term, it rarely helps us long-term, and often our bodies are still impacted and our minds become less and less attuned to our own bodily needs.

To get through the trauma, we need to let it out – let ourselves acknowledge it, feel it a little, express the pain and fear and hurt that we experienced, so it doesn’t haunt us as badly anymore.

Creative expression can help, like poems or art or writing in general. It doesn’t need to be for public consumption, it can be just for you so that you can process through it and help yourself move forward.

Part of why I blog is the very specific desire to spare others from the traumas I’ve had – especially when it comes to medical care and the social welfare system, both of which can be major emotional traps for us.

You can also use meditation and mindfulness as tools to help you rediscover and reconnect with your own body.

Take time to recognize and respect the traumas you have experienced, so you can heal, and learn from them.

Learn what you can, so you don’t keep being injured the same way, but recognize that nothing’s perfect and there’s always some risk in life.

With medical trauma, you may need to take some time with minimal appointments to help yourself heal, but do what you can to ensure that you are taking care of yourself, and don’t neglect wellness visits or regular checkups if you need them.

You deserve to heal, but there still are times when the doctors are the better option.

My goal in this blog is to give you the tools you need to minimize your traumas, get the most out of each appointment, and to guide you towards the best strategies you can find to help yourself heal.

For more on medical trauma, read Nicole Neer’s guest post, where she shares her experiences, with more advice on managing your traumas.