Is it really that bad? Maybe I’m just overreacting? Medical gaslighting and self-gaslighting – how do we end up here?

*I want to preface this  article by noting that there are many many excellent health professionals out there (my current GP included), and that this issue is very complex and multi-faceted. I am absolutely not trying to create an anti-medical narrative, on the contrary, a lot of my work as a psychologist is about helping patients and medical professionals understand each other better, so that they can work together in a more healthy and helpful way.

Have you found yourself second guessing the severity of your symptoms? Perhaps putting off going to the doctor longer than you should? Or getting there and then leaving feeling that you didn’t really get across how bad things were? You are not alone. Have you been told that your symptoms are “just stress/anxiety” and offered anti-depressants? Or perhaps you’ve been told that “this is normal” (especially in relation to pelvic pain) when your pain is anything but normal? You are not alone. You are not alone.

Put your hand up if you have been to the doctor about period related symptoms, like heavy bleeding, pain, fatigue, or nausea, and been told “that’s normal”. How many years did it take to get someone to take you seriously, and for you to receive a diagnosis? I had terrible heavy bleeding for at least a decade, before I discovered by myself that I had a pelvic mass (no one had ever requested an ultrasound scan in all those years). It turned out to be a grapefruit sized fibroid, and once removed my bleeding reduced by easily 40%. Sound familiar?

Being repeatedly dismissed by medical professionals – being medically gaslit - can lead to self-gaslighting, where we then start to question ourselves and our own reality. This is incredibly anxiety provoking and causes significant distress, which over time lead to avoidance of treatment. So while initial delays in accessing treatment can be due to dismissal by a medical professional, over time this then leads to people delaying or not accessing treatment at all, due to 1) their lack of confidence in their own experience and 2) the expectation that they will be dismissed again.

Multiple studies that show that women’s health concerns are more frequently dismissed or minimized by health professionals; up to 84% of women have had pain or other symptoms dismissed at least once.  Did you do a double take reading that statistic? Me too. This is a very real problem, with very serious consequences, the most severe of these being delayed or missed diagnosis of life-threatening conditions like cancer.

 So why do women end up feeling dismissed or invalidated by health professionals?

There are a number of societal and historical issues that contribute to this issue. This first is the impact of the *ahem* patriarchy. Women have historically been framed as “the weaker sex”, and “hysterical” (wandering uterus anyone?), which has led to an underlying belief that women’s opinion or experience can’t be trusted.

In NZ, the medical workforce is now 48.9% female, however 25 years ago in 2000, that percentage was only 32.6%. Whilst the improving balance of genders in medicine is excellent, the legacy of a mainly male medical profession remains, in the unspoken patriarchal biases and attitudes held by senior medical professionals, who are often mentoring and leading departments of more junior doctors.  

Women are often socialized to be “good girls”, which can have a range of meanings but is likely to generally encompass being well behaved, quiet, submissive, following instructions, and certainly not arguing back or being “bossy”. Depending on your upbringing and life experiences, you may also feel fearful of men, or people in authority, and standing up to these people may feel at best difficult, and at worst, completely impossible.

There is also the issue of medical research bias. This refers to the tendency for scientific and medical research data to be collected from males – women have historically been excluded due to concerns about harming women’s fertility, researcher bias from male researchers, and the perception of men being representative of the entire species (*cough* patriarchy *cough*). One recent study analyzed 86 randomized controlled trials (the gold standard of research) and found that females represented only 37% of the participants, despite females making up more than 50% of the population. Sigh. Did you think we were further ahead than this? Think again!

But wait, there’s more. If you add in being non-european and/or gender-diverse, then the medical, societal, and racial bias can be far more severe. These groups – think Māori, Pasifika, trans, non-binary – have some truly horrific health statistics that are directly related to either avoidance of medical settings (historical trauma thanks to colonization), western/colonial medical models not being appropriate, or outright discrimination and bias within the medical setting. This is a whole separate article topic to be honest, and deserving of much more than a paragraph here.

So what can we do about this?

How do we move out of this self-gaslighting state, and back into our confident and assertive selves? One of the most important things to be aware of when going into a medical appointment is that depending on our life experiences, attachment style, and level of emotional regulation skills, we can often end up feeling upset and distressed – just because we are feeling both unwell and vulnerable, in a situation where we are asking for help from someone who is in a position of power and authority. Add in some invalidation and dismissal, and we can end up so distressed that we shut down, cry, or get completely derailed and end up leaving feeling like we didn’t get to communicate effectively.

Here are some strategies to manage:

· WRITE EVERYTHING DOWN. If I’m going to the doctor with a complex or challenging issue, I go with a list of bullet points, and I refer to it during the appointment. If you have it on your phone, you can make it a checklist, and tick the items off as you go. If your doctor has a problem with this, you need a new doctor.

· Use the STOP strategy to get yourself back on track.

Stop, Take a breath, Observe what is happening, Proceed mindfully. So in an appointment where you’re starting to get upset, this might look like: stopping talking, and taking a calm slow breath in through your nose and out through your mouth. Once you’ve given yourself this moment, try to notice what is happening, both in the room, and for you e.g. the doctor is telling me to just try paracetamol again and I know that doesn’t work, I’m starting to feel really frustrated. Then proceed mindfully, which might look like saying “I’m hearing you tell me to use paracetamol again, and I’ve tried this a lot and know it doesn’t work for me, can we work together to find another option?”

· Use emotion regulation strategies to help ground yourself, either before or during the appointment. Have a google of: paced breathing, TIPP skills, 5 Senses Technique, or take along something physical you can use to help maintain focus like a stress ball or fidget toy.

· Have a conversation with your doctor about how you are feeling. A good doctor will not want you to feel invalidated or dismissed, and will want to work together with you to improve the doctor/patient relationship. A good doctor/patient relationship can actually heal medical trauma, rather than causing it.

· Take a support person or advocate with you to your appointments, they can help to ensure that you are heard.

· If a doctor refuses to provide a referral, access a second opinion, or provide treatment that you think is necessary, you can ask them to ensure that they have noted this in the documentation, including reasoning for the decision.

· If your doctor continues to invalidate or dismiss you, either change doctors or ask for a second opinion about your issue. My current GP is a very kind human who has absolutely mastered the art of explaining things to me in a way that help me understand clearly why he is or isn’t doing something, whilst being super validating of my experience. They do exist!

· If you have experienced severe medical trauma that is impacting your ability to access healthcare, then seeing a therapist can be really helpful, both in terms of giving you coping strategies to manage in the moment, and also processing genuinely traumatic interactions so that you aren’t so triggered in medical settings.

· Accessing support groups can be helpful, although social media support groups (especially if not well moderated) can be a mixed bag in terms of being biased or outright traumatic depending on the content of the posts.

· Finally – remember that your experience is valid, your pain is valid, and your emotions are valid.