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Let’s talk about medical gaslighting

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I was talking to a colleague about some new treatment options the other day which is super exciting and I can’t wait to share with you when I’ve done some more background on it. Anyhoo, we got onto the topic of trust and safety with trying emerging treatment options. Inevitably we got onto medical gaslighting and trauma and how it can create a real barrier to future care. Some of the things we hear from CRPS Warriors is absolutely heartbreaking. God knows I experienced a massive amount of my own medical trauma and gaslighting in just 5 years of living with CRPS.

The people living with the condition are the experts.

Hell, breaking my ankle morphed into CRPS and re-learning how to live with dynamic disability at times has been made unnecessarily hard. The surgeons and doctors spent months telling me, what I now know to that start of the CRPS, was just the body healing and it was normal, to basically telling me I was being dramatic, to then it’s in my head, to then realising something was really wrong. By then the damage was done.

The last five years has taught me a lot of myself. It’s also taught me to trust my gut instinct. If something doesn’t feel right, it’s probably not. I’m in a different place now and a different person. I don’t trust as easily. But I’ve never lost hope.

I think Michael J Fox said it best. “The people living with the condition are the experts.” I hope this post helps other CRPS Warriors embrace this fact. And help reshaped conversations with clinical teams to more openly embrace patient-led care.

Medical gaslighting is as real as the pain

Medical gaslighting is as real as the painI’ve come to realise that medical gaslighting is a big issue for most people living with CRPS. For me, after what felt like an eternity of trying to get someone to believe that something was indeed wrong and it wasn’t normal for a body to be doing what mine was, the surgeon dropped me like a hot potato. The next two years were complete hell on earth.

There were countless times when I was starting to doubt my own sanity from all the times I was told what I was feeling wasn’t real. Between my rather toxic family and doctors, I felt like I was going insane. In case you were wondering, yoga and mediation and positive thinking didn’t help. And it didn’t matter how many times my amazing condensing family said it, it didn’t make is less true. (And no, I don’t have a relationship with them anymore for this and many other reasons. CRPS was the boundary I needed to start to heal from that particular toxicity).

Care plans in partnership

I worked in clinical IT for most of my career in and around hospitals, with doctors, nurses, and other health care workers. The concept of patient-centered care is EVERYWHERE. CRPS taught me that there is a very big difference in talking the talk and walking the walk. Sadly, a majority of my experiences, particularly early in my initial recovery and first few years of formal CRPS diagnosis were not collaborative or overly supportive.

The only saving grace in my first year that ultimately resulted in my CRPS diagnosis was that my GP believed me. And continued to research together. They continued to look at and prescribe pharmacological relief while we searched for answers. I went on meds. I went off meds. My dosing was adjusted. All based on my feedback. We kept trying and kept looking for answers together.

Patient-centered care, patient-led care, patient empowerment all mean the same thing. The patient is at the centre of what’s happening. Not the diagnosis. Not the treatment. The person that everything is happening to. There is endless research to show that patient-centered care has better clinical outcomes. Full stop. End of story. But it’s not.

Over the years, I’ve built my own care team. I am incredibly privileged that I have had the option of choosing the individuals who help me manage my CRPS. I’ve fired a significant number of clinicians because their treatments aren’t right for me. Probably that bigger reason has been their approach to clinical practice is not patient centric and I am not a lab rat for them to play with while they discover more about a rare condition. I know that this isn’t always an option for us and it breaks my heart hearing about some of the experiences CPRS warriors have with specialists.

CRPS makes us vulnerable.

The never ending pain gnaws away at our sanity and strength. The drive to have any relief from the death metal concert with the pyrotechnic spectacular exploding through our bodies makes us extremely vulnerable. It makes us extremely suggestible. While I often feel like the term psychological safety gets abused, it’s absolutely applicable in this context. And again, the research tells us that when we feel safe, and trust our care team, there is a higher correlation with positive clinical outcomes.

Whether the connection between positive clinical outcomes and psychological safety is placebo or not, the fact remains that our brains are powerful. And our perception (conscious and subconscious) shapes our reality. We have the right to feel safe. And when our pain has our flight and fight responses in hyperdrive, that need to feel safe in our own skin, in the environments we are in, the people around us becomes even more imperative.

The fear we feel about doctors appointments, procedures, routine rehabilitation sessions, medication changes and everything else in between is real. The anxiety of not knowing how you will feel after a rehabilitation session is real. The anxiety of changing doses, being taken off a medication, being put on a new medication is real. Working with a care team that we can trust and feel safe with doesn’t make that fear less real. It doesn’t even take those fears away in a lot of cases. But it does open up our ability to talk frankly about what is causing us anxiety or fear or discomfort and gives our care team that opportunity to give us support as we navigate through the fear as changes to our care plans and protocols change and evolve.

The pain can make it difficult to listen and comprehend information.

The pain physically makes it difficult to listen and concentrate. You’re not loosing your mind. It’s our brains kicking into survival mode.

Pain, particularly persistent pain, triggers our body’s fight or flight response. It is acute stress response, is a physiological reaction that occurs in response to a perceived threat or danger. It creates physiological and psychological changes. It prioritises our immediate survival, our brains switches gears and reduces certain cognitive and perceptual processes. Active listening and communication tends to be one of those cognitive functions that can become affected.

When you add the stress of being in an unfamiliar environment, the sensory stimulation of hospital noises and smells, being faced with uncertainty of what will happen before, during or after an appointment it can make it really difficult to process what’s happening around you and the information you are being given. I talk through some things that I find really helpful managing this further in the posts. For the moment, I will leave the point on having a care team that you trust and feel safe with it is crucial to being able to help regulate our natural stress response.

Being bullied into treatments and medical gaslighting

I had no idea was allodynia was before 2020. All I knew was the lightest puff of air felt like a category 5 cyclone, showers felt like hundreds of medieval mace were being catapulted onto my foot, the burning and pins and needles wouldn’t stop. I thought my foot was going to split open from the extreme swelling. I needed it to stop. I needed answers to what was causing it. I needed to be believed. I needed to not be dismissed as being dramatic or worse yet being treated like a drug seeker.

There is a lot more awareness around gaslighting. It is a term that can be misused and abused (which ironically is gaslighting in itself). A disagreement or difference of opinion is not gaslighting.

Gaslighting is a form of psychological manipulation in which a person or entity seeks to sow seeds of doubt in a targeted individual or group, making them question their own memory, perception, or sanity. This manipulation often involves the perpetrator denying facts, events, or their own actions, and may involve withholding information, trivialising the other person’s experiences, or presenting false information with the intent to confuse or deceive.

What medical gaslighting looks like

More specifically, medical gaslighting can look like:

  • Dismissing symptoms as being “all in their head” without conducting thorough investigations.
  • Minimising the severity of a patient’s symptoms, leading them to believe that their concerns are unwarranted.
  • Attributing symptoms to psychological factors without considering potential underlying physical causes.
  • Providing inadequate explanations or withhold information, leaving the patient feeling confused or uncertain about their health.
  • Dismissing or ignoring concerns about their treatment plan or medication side effects.

I can tick every single one of those examples. Some of them multiple times from multiple clinicians and specialists.

I know I am not alone.

It’s just a broken ankle

Medical gaslighting can lead to delays in diagnosis and treatment which in itself has negative impacts on mental and physical health. While I was diagnosed a lot earlier than most CRPS Warriors, the mental toll it took was significant. While a part of me likes to believe that COVID and the various stages of lockdowns were a part of it, the number of stories I’ve heard from before COVID and post COVID don’t give me much hope.

The surgeon that was dealing with the broken ankle dismissed a lot of anything I had to say. I remember being told that I would only need to stay overnight after my initial surgery. My pain was so extreme that I was held for another night. They gave me more meds and told it was normal post operative pain and it would settle down.

When my cast finally came off and I was put in a moon boot, I was told the tingling was normal and it would settle down. At my next follow-up, I mentioned the tingling again and I was told that once the bolt holding by tibia and fibula together came out, it would get better.

The beginning of the endWhen I was in pre-op to have the bolt removed, I pushed hard on the tingling and that it felt like something sharp was stabbing and grinding inside my ankle. I begged them to remove that plate along with the bold and put me back into a cast. Again, I was told that it would all go away after the bolt was removed. I remember quietly crying in pre-op and the anesthesiologist gave me a sedative to “calm me down”. I woke up in recovery feeling like I’d been hit by a truck. Even through the anesthetic I could feel the intensity of pins and needles and burning. It had gone from being maddening before surgery to being crushed a mosh pit at a death metal concert. Again I was told my nerves would settle down in a few days and to just take the meds.

A few days turned into a week. I couldn’t sleep, I couldn’t concentrate and the meds did nothing. I felt like I was going insane. I called the hospital and the nursed fobbed me off telling me it was nothing and to talk to my GP for more medication because I had been discharged (first I’d heard of that because I still thought I had post surgical follow-ups).

Getting a diagnosis

A month went by and it was getting worse. I was hardly sleeping. I couldn’t tolerate anything touching on it. I couldn’t wear shoes. And I was only leaving the house for medical appointments. Not knowing what the issues was I couldn’t find any answers online and kept cycling through the different medications my GP was trying to help get a grip on the pain. I became like a dog to a bone about getting the metal plate removed. I waited the six months I was told was required before anyone would consider removing the plate. I swear to God, it was my sheer stubborn nature that got me through.

After a lengthy process and a lot of arm wrestling the system, I saw an ankle specialist who removed the plate, did a full clean out of my ankle and determined that there was nothing mechanically wrong. More likely than not there was scar tissue irritating the nerve which can’t be fixed and to get my GP to refer to a pain clinic for management.

The first specialist was in private practice who formalised the diagnosis, changed some meds and started flogging a spinal cord stimulate. I was going to have to self-fund it. He strongly recommended that I get health insurance to get it done. I paid over $500 for a script and a sales pitch for “the only hope of treating CRPS”.

The next was a multidisciplinary pain clinic in the public health system. They danced around it being CRPS and I remember leaving my first appointment dumbfounded, belittled, completely dismissed and angry. They would also not provide me any of treatment options unless I went jumped through hoops, come off medication that was working but they didn’t agree with it use, and try a series of therapies and treatments most of which I had already tried in multiple forms and funnily enough did not believe them that this would different and better. They also wanted me to do a pysch consultation because CRPS patients are a suicide risk (even though I had no mental health symptoms nor otherwise presenting with concerning behaviours other than being in pain) and they would stick me in a hydro pool multiple times a week, completely ignoring my concerns about the water pressure and my body’s inability to regulate its temperature.

I was gutted and feeling abandoned. It was at that point a family member said to me, “well they will give you really good drugs for pain, I don’t understand the problem. It not like my PCOS where they won’t do anything”. Things deteriorated further from there, to the point when I needed to separate myself altogether. CRPS results in dynamic disability. It’s not easy to understand. It’s not a choice. And “the really good drugs” are in fact not really good. For me, they hardly touched the sides and the side effects were almost worse than the pain.

One experience that I will never forget

I was in year 2 of my battle with the beast. I had seen two different pain specialists at this point. Yet another specialist had confirmed Type 2 and I was getting regular lignocaine infusions.

I was self-funding the procedures at a private pain clinic but didn’t care because I felt like I was finally getting somewhere. I was getting a few months of peace from the infusions. Until I wasn’t. It stopped working.

Day 1 of the two day outpatient session and I felt off. Normally I would start to feel like the pain was starting to turn down, kind of like music fading into the background. I remember the infusion feeling like ice through my veins. I remember mentioning to my nurse, who I’d gotten quite chumming with over the past months. She called the specialist who just told her to slow the rate of the infusion. At the end of the infusion when the specialist popped their head in to check pain levels, I felt no change in my baseline. This was shrugged off and was told it happens and we should see a change the next day.

Day 2. Even with the slower infusion rate, it still felt ice cold flowing into body. At the end of the session I was doped off my face and still in agony (and several thousand dollars lighter for the courtesy). This is when she started pushing nerve ablation hard. Wrote me a script for more pain medications, an anti-depressant and a referral to a psychiatrist because my mental state was impacting my treatment. Let’s be clear here, I was not depressed. I was not struggling with mental illness. I was in fact coping remarkably well, working full time and living independently alone in my apartment. She sat there gaslighting me that the medication that had previously worked, was not working because it was in my head. She also inferred that my nausea and dizziness was more likely caused by my ketogenic diet than the known medication side effects. I was furious.

Now what?!

After licking my wounds from the failed infusion, I asked my GP to put me back on the medications that had previously worked really well. Pain Specialist #3 didn’t like what I was on, so had gaslit me until I came off them and go onto some other stuff that made me absolutely miserable with side effects and no pain relief.

I came off all the other meds that were making me miserable and doing nothing for my pain. Basically, I hit reset. I figured it couldn’t be any worse than everything the specialists had tried, and failed. At least I wasn’t frying my liver and kidneys for the sake of their egos and being seen to doing some f0rm of treatment for the outrageous consultation fees they charged.

At no point am I anti-medication. I would like be very clear on that point. I still take one medication daily and I have flare medications for when I need them. I am anti “being on medications for the sake of it or because they don’t know what else to do”. Pharmacology is an extremely valid treatment option for CRPS. I think informed consent with any type of treatment is essential, and in my experience, most specialists fail to take the time to explain why they’re prescribing what they do and the possible side effects including the less common ones. I got a lot of the less common side effects which also added to my sense of helplessness because I didn’t understand what was causing new symptoms and issues. This is one of the many reasons I have trust issues with doctors.

I continued with acupuncture which was giving me some relief and worked hard on trying to calm down my central nervous system. I learned more about how the meridians work and more about traditional Chinese medicine and natural medicines. How food is nature’s pharmacy and is a very valid and under-valued approach to healing.

I went strict clean keto for a while to try to eliminate anything and everything inflammatory from my diet. I even tried carnivore which I think lasted maybe all of two weeks before I cracked and needed to eat something green. I continued to lose all my medication weight. I read everything I could about refining my diet and supplementation to better manage my pain. Once I quickly exhausted the very limited literature on CRPS, I started looking at other inflammatory conditions and how diet would help or hinder baseline pain.

And I joined a stack of online communities for CRPS on Facebook determined to find answers. It was almost a year before I found my what’s next and a new pain specialist. From there, I haven’t looked back. I got onto Scrambler (Calmare Therapy), Oska Pulse, reduced my medication, continue to refine my supplements and continue with a keto lifestyle to manage my pain (which my pain specialist advocates).

How to navigate medical gaslighting

Trust your instincts

If something feels wrong, trust your instincts. We know our bodies best. Your concerns are valid, and you have the right to seek answers and appropriate care.

Whether you’re feeling off since starting a new medication. Or your pain is different. My pain was dismissed again and again by surgeons and specialists for months before I got any response. It sucks. It’s exhausting. But trusting my gut and perusing it ultimately led to getting treatment.

I remember the same thing happening with my reflux. A pharmacist dismissed me, saying I was too young for anything to be wrong. A locum GP laughed it off and gave me an anti-avid to shut me up because I’d paid for a private appointment. Eventually another GP put me on medication and just kept increasing the doses. I was on this medication for three years before a new GP asked what testing was done. Nothing of course was done previously. They ordered some specific tests, got the bottom of it and I was able to stop the medication and treat the root cause of the issue. I’m sure we all know dozens of similar cases.

Educate yourself and seek support

Granted a lot of information available online is centered around CRPS being the “suicide disease” which makes it’s extremely off putting to go searching for more information. Or it’s the same things over and over about the same half dozen medications and physio and pain psychology. Even since my diagnosis, I’ve seen this change. I don’t know if it’s that I’m more aware and know what to search for, or if there is a genuine shift in understanding.

The online support groups on Facebook continue to be a valuable source of information and support for me (I list some of my favourite groups here). I have asked hundreds of questions about treatments, medications and different things that have or have not worked. They’re also a safe place when you just want to feel heard. I spent the first few years of my CRPS as a single woman, and I certainly had zero family support. Thankfully I have amazing friends who are my family that helped me a lot. But the online communities also became a fundamental part of my support system and I now have friends across the world that I have connected with because of this beast.

  • NPS MedicineWise is an Australian government website with a variety of health information
  • Healthdirect Australia is the national virtual public health information service. We work towards the health priorities of our Commonwealth and state and territory funders to improve the health of Australians.
  • PubMed is a research database if you want to dive deeper in to treatments and research. I use it a lot but we know I’m a nerd. I also use Google Scholar.

Google is our friend and can be our worst enemy. Look for information on trusted sources and/or contains references. There are many claims made, not all of them are based in fact or science.

Keep detailed records

Pain brain is real. And it’s infuriating not being able to trust your memory sometimes. But the first year of living with CRPS is a lot of take in. Your senses are overloaded from pain, there is generally a lot of information to take in and there’s a lot of big feelings to feel throughout the way. Keeping a journal/diary of your symptoms, medical appointments, treatments, and any interactions with healthcare providers helps take the pressure of your memory. It’s also really useful in appointments to help you make sure you’ve asked all your questions and that you are comfortable with the answers and recommendations. Having thorough records can help you track your health, identify patterns as well as provide evidence to support your concerns.

Writing down your questions before appointments is amazingly helpful. I found sometimes I would get so overloaded with information in appointments I would forget to ask questions. Also being able to write down notes gives you something to look back on when information is being thrown at you. Do not be afraid to ask a doctor to slow down or to read back your notes for clarity and your understanding. They work for you.

I still periodically keep a journal, particularly if I’m changing something big in my care plan. I tend to also include what I’m eating because I’ve found a lot of less obvious things come to the surface that have been impacted positively and negatively from what I’m eating.

Seek a second opinion

If you’re unsure about a diagnosis or treatment plan, consider seeking a second opinion from another healthcare provider. A fresh perspective can offer valuable insights and help validate your concerns.

Or a third, or a fourth. I was terrified I was going to be accused of doctor shopping, particularly with the S8 medications used to treat CRPS. But for me, trusting my instincts and pushing for different answers has ultimately lead me to finding a pain specialist who would work with me and ultimately get control of my pain and regain quality of life.

You are worth. You deserve quality care. You deserve peace of mind when making potentially life altering decisions.

Communicate assertively and know your rights

Clearly express your concerns, symptoms, and preferences to your healthcare providers. Be assertive in advocating for the care you need and deserve.

I know that this is easier said than done sometimes. Again, I strongly recommend keeping a list of questions for your appointments helps with making sure you get the information and support you need. Something to consider is that doctors have a legal obligation to ensure that they have satisfied the requirements of informed consent before they prescribe medications or undertake treatments or procedures.

Informed consent means that you understand what and why a recommendation is happening and any possible side effects or impacts. It is our responsibility as a patient to ask the questions to ensure we are informed before we consent to the recommendation. By taking medications prescribed, we have consented to the treatment.

In my experience specialists are amazingly talented at brushing over the details and handing out scripts with little to no explanation.

Bring a trusted advocate

I know better than most that this isn’t always possible. I’ll skip over my family but often my friends couldn’t come to appointments because of work and a lot of the scarier appointments happened during COVID which meant no one could join you for anything. It was 2023 before I ever had anyone come to any appointment or treatment with me. My partner asked a million questions which my specialist happily answered. They loved that my partner was interested and that I had support at home, knowing that I had be single and alone for most of my CRPS journey. My partner also chimed in with things that either I’d forgotten or didn’t think was worth mentioning, which actually did matter.

So, consider bringing a trusted friend, family member, or patient advocate to medical appointments to provide support, ask questions, and help ensure your concerns are addressed.

Learn about Ryan’s Rule. And don’t be afraid to use it!

“Ryan’s Rule” is a patient safety initiative that originated in Queensland, Australia, named after Ryan Saunders, a young boy who died due to a failure to recognise and respond to his deteriorating condition while in hospital. It empowers patients and their families to escalate concerns about a patient’s care if they feel their concerns are not being addressed adequately.

While the initiative is primarily known as “Ryan’s Rule” in Queensland, similar processes and initiatives exist in other Australian states and territories under different names.

  1. New South Wales: In New South Wales, a similar initiative is known as the “Clinical Excellence Commission Rapid Response System.”
  2. Victoria: In Victoria, it’s referred to as the “Rapid Response System” or “RRS.”
  3. South Australia: In South Australia, a similar initiative is known as the “SA Health Rapid Response Service.”
  4. Western Australia: In Western Australia, it’s referred to as the “Recognising and Responding to Clinical Deterioration” (RRCD) program.
  5. Tasmania: In Tasmania, it may be known as the “Tasmanian Patient First Response” or similar.
  6. Northern Territory: In the Northern Territory, it might be known under a similar name or as part of broader patient safety initiatives.
  7. Australian Capital Territory: In the Australian Capital Territory, it could be part of broader patient safety protocols or initiatives.

These initiatives vary slightly in their implementation details and specific processes, but they all aim to empower patients and their families to escalate concerns about patient care when they feel it’s necessary.

Being an Aussie, I really don’t know a huge amount about the workings of international healthcare systems. But the concept of Patient Advocacy Programs and Patient Safety Reporting Systems are universal. I know we have seen the horror stories of the system failing CRPS Warriors. Maya’s story is one of the best known. But we can’t let that stop us from advocating for ourselves and our family if and when we need it.

What’s next

As I’ve been writing this, it’s occurred to me that I probably needed to write this as much for myself; to reflect and articulate my own trauma as part of my own healing process. And to acknowledge how far I have come since I was first diagnosed.

If you’re still reading, thank you. I hope you found something useful that you can take away from, even if it’s feeling less alone in your experiences.

The longer I live with CRPS the more I realise it’s like a Japanese Finger Trap. The more you pull against it, the worse it gets.

The more I work in rhythm with my body and my brain, the more of my life I regain. CRPS is neurological dysfunction. To ignore the brain’s neuroplasticity closes so many doors on being able to manage pain. Learning how pain affects our neuro pathways, how it interacts with and can over excite hormones, its impacts on the gut-brain axis and developing a better understanding of the science has opened up different treatment approaches. Being able to make connections with the gut biome and its impact on neurological function has been profound for me. All of this has changed the way I work with my clinical care team. It’s changed the way I interact with myself and my CRPS.

As I’m finalising my initial accreditations and clinical registrations to work as a nutritionist, my client experience is front of mind. How can I empower my clients to take positive and sustainable steps to better manage their health and their pain through their nutrition. How can I work with other clinicians to educate them on CRPS. How can we increase awareness about the need for multi-disciplinary treatment approaches for CRPS that are patient-led. My CRPS put me on this path. I need for there to better solutions. I need for there to be a better quality of life in spite of pain. I need this for me. I need this for our community of CRPS warriors. I need this for my friends and my family who are in the fight with me, everyday. To quote Michael J Fox again, “the people living with the condition are the experts”. Treating CRPS will never be theorical for me, it’s my life. The one thing CRPS will never steal from me is hope.

No Spoons to Cook will remain a free resource and will hopefully help people reclaim control of their health in a way that works for them. There is no single answer to treating CRPS. For me, this is my way of giving back to our community of Warriors that help me every day in my fight and so selflessly share their experiences with the hope it will help someone else. It’s their bravery that gave me the courage to start this. And I hope it helps grow awareness in our community and takes us one step closer to better treatment options.

Disclaimer: No Spoons to Cook is based on our own experience and research, and what we know works best for us. It is not medical advice. Our recipes focus on low inflammatory ingredients, whole foods and are founded in ketogenic and low carb ways of eating. We encourage spoonies to stay curious, ask questions, do your own research, listen to your body and to work with a Registered Dietitian or Medical Professional when appropriate to tailor your nutritional needs to support your care plan and goals.

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