Gaslit & Dismissed: The Truth for Chronically Ill and Neurodivergent Patients

Content note: this post includes references to suicide

I have never truly been a ‘well’ person. Since early childhood, I remember either waiting to be seen by a doctor at home when I couldn’t get to a surgery, or waiting for an appointment to attend the GP surgery – most of all I remember the nauseating feeling in the pit of my stomach and the worry I felt. Why was this?

I knew, even from such a young age, that I was being unheard – misdiagnosed and dismissed. By the age of around twelve I had completely lost faith in GPs after a doctor told me and my Mother that the reason I was struggling with my mental health so much was because I wore too much black and didn’t get enough sun. I was a pre-teen, Scottish female, beginning my rebellious stage, of course I was wearing black and didn’t get enough sun!

Sadly, now that I am in my mid-thirties, the feeling of nausea and anxiety have only magnified. This is a very common feeling amongst the chronically ill and neurodivergent communities.

Let’s begin at chronic illness

I started my diagnosis journey for my plethora of chronic illnesses in February 2013 when I was only twenty-five. I collapsed at the top of my staircase and hit my head on the top stairs while trying to force myself to get ready for work. It was my labrador who saved me that day. I never went back to work after this.

I was living in Kidderminster at this time as that was where my partner – now husband – was from so I was under NHS England. For three months I was passed back and forth, never seeing the same doctor twice, moving from doctor to hospital to nurse back to doctor. I was in severe pain, couldn’t stand, drink, move, even breathe at times without help from my husband. When I wasn’t asleep, I wasor having some kind of seizure. We were terrified.

I was diagnosed in late April of 2013 with Myalgic Encephalomyelitis (M.E) and Fibromyalgia. Since then, I have added extra comorbidities to the list including but not limited to Endometriosis, hyper-mobility and asthma. The diagnosis for M.E and Fibromyalgia, in a nutshell, is made to rule out everything else; when they can’t figure out what is going on and when the information needed to diagnose does not exist.

When I began asking questions, the doctor who made the diagnosis pulled up Google on her computer and started looking for the answers. I knew then and there that I was going to have a very long and lonely road ahead, and I was right. We moved back to Scotland after my diagnosis so that my husband didn’t have to carry the weight of care for me on his twenty-three-year-old shoulders.

In my ten years of being chronically ill, I have only had one GP who took me seriously and supported me; a locum doctor who eventually left the practice. I grieved heavily when I had to part with her as these kinds of doctors are golden needles in a compacted and tangled haystack.

Gaslighting in the medical profession

The term ‘Gaslighting’ — a manipulation tactic planting seeds of doubt in a person’s mind causing the individual to question their reality — has in recent years become topical and used, mostly, in reference to abusive relationships. More recently, and particularly in light of the COVID-19 pandemic, the relationship between doctor and patient is being more publicly interrogated as having the potential for abuse.

Individuals with M.E. have long named the medical gaslighting present in the history of the diagnosis, with evidence of the its use dating from at least the 1960s (although there is possibility that a similar illness dates to 1750). The illness has been called the “The Disease of a Thousand Names” due to the vast number of names given to it over the years and its controversial nature in the medical field. Up until the late 2010s it was still considered to be a psychosomatic illness.

Listicle – 9 personal examples of being gaslit by the medical profession

1. “I don’t really believe in M.E./Fibromyalgia” – a neurologist 
2. “Let me just check Google about this as I’m not aware of the illness you are talking to me about.” – a GP
3. “You have a very attractive husband and you need to stop this nonsense now because you are lucky that someone of his calibre has stuck around for you; he could get a number of other women and will if you don’t stop this.” – a psychiatrist
4. *Laughing* “Just don’t look and get on the scale.” – a nurse after me asking not to be weighed due to severe body dysmorphia
5. “Oh, you have tattoos. How many non-prescribed drugs do you take in a month?” – a GP (even though I have been Straight Edge most of my teenage and adult life)
6. “Yes, I see you’ve gained quite a bit of weight; you were quite slim before COVID and I last saw you.” – a GP after I cried to her about my struggle with body dysmorphia & PMDD
7. “What exactly is it that you want me to do? What is it that you think I can help you with?” – a Gynaecologist
8. “It’s just sciatica, there’s nothing more we can do other than give you pain medication that you don’t want to take. You’ve been to us six times in the last three months with this; you’re lucky we saw you again today really.” – a GP (the next day I was rushed to hospital and diagnosed with prolapsed discs and S1 root damage.)
9. “You’re just depressed, anxiety is part of this.” – a GP (every time I went to see them in my teenage years, now I’ve been diagnosed with AuDHD).

As you can see, my experiences of medical gaslighting are not isolated events. This is the kind of treatment I have come to prepare myself to endure when I must attend any kind of medical appointment. This is usually after waiting months, sometimes up to a year for an appointment with a specialist or hospital in the first place. This is the treatment we receive when we are struggling day in, day out with all our symptoms and need medical support.

With chronic illness increasing the likelihood of people having suicidal thoughts and struggling with mental health this treatment then adds fuel to the ‘feeling isolated and alone’ fire. When not even your medical professional helps you, it is difficult to know where to turn, and hope is lost.

Now comes neurodivergence

I was diagnosed in adulthood — at thirty-four to be precise —with AuDHD, and when I went to seek guidance from my GP after realising I may be neurodivergent, she nonchalantly said:

“Yes, that makes sense especially with your history of depression, PMDD, anxiety and of course having hyper-mobility.”

These comorbidities were news to me, especially the relationship between hyper-mobility, PMDD and neurodivergence. I have more recently discovered that Body Dysmorphic Disorder is also a common occurrence in people with ADHD.

There has been a lot of media attention around ADHD and Autism in the last year or two, with social media platforms making individual peoples’ experiences more publicly available. This has led to many people, myself included, realising that the struggle to ‘keep up’ and ‘fit In’ in is actually because we aren’t neurotypical.

The reason so many people are now coming forward, especially those who identify as women, is due to medical gaslighting and misdiagnosis for the majority of their lives. ADHD has historically been seen as something that only young boys can have, and many young girls have been overlooked because they did not conform to the stereotypes depicted.

Unfortunately, this comes at a heavy toll, with up to 66% of autistic adults having contemplated suicide themselves and 28 times more neurodivergent children to neurotypical children attempting suicide. 1 in 4 women with undiagnosed ADHD attempt suicide.

Conclusion

I believe that a lot of this treatment by doctors could be rectified with more intensive training; a lack of updated knowledge and capacity for compassion as a result of staffing shortages and funding cuts is a huge factor in medical gaslighting. Many doctors have been practising for years and yet, repeat the same practices without question. The NHS promotes mental health for both its staff and patients but there seems to be a huge disconnect between their promotion and their practice. If they promote respect in the workplace, a patient should be respected in their vulnerability.

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This blog is part of our series on safety and care in healthcare settings. You can find the other pieces in the series here.