© Illustration by INJECTION - Mollie Sprigg
The importance of advocacy to make ourselves heard by medical professionals.
Medical gaslighting is when a medical professional dismisses or trivializes a patient’s symptoms. Often, they claim what the patient is feeling is not real, and is in their head which can not only severely delay a proper diagnosis but can also have a great impact on one’s mental health. As a Lupus patient for almost eight years, I have been gaslit more times than I could count. Doctors have told me my symptoms are in my head, it’s just anxiety. Doctors have told me my pain ‘isn’t that bad,' or ‘it doesn’t look like [I’m] in pain’ because I don’t flinch to show indications of pain during check-ups when this would be due to my high pain tolerance. I have to constantly fight for months, sometimes years for something to be done about something that could be more serious than they take it for. Many doctors gaslight their patients and it happens more than you think.
INJECTION interviewed several amazing individuals within the chronic illness and disabled community. All of them have had both mentally and physically exhausting times with doctors. All have stated medical gaslighting in their lives. Doctors often fail to realise patients are not guinea pigs in experiments, a page out of their textbook, and our symptoms are not generalisable. Whilst one might go through similar symptoms to another, that doesn’t mean it’s the same diagnosis or the same degree to which somebody else experiences something. It can lead to a delay in diagnosis, misdiagnosis, mistreatment, and of course medical gaslighting. And it just makes patients feel at constant loss, where they feel like nobody wants to help them and they lose all faith in doctors who are meant to handle our situations with extreme care and concern.
Every individual who was asked has been medically gaslit in different ways. Iman was diagnosed with POTS (Postural Tachycardia Syndrome) after enduring years of tests and waiting, and also has other conditions which took way longer to diagnose, some not written down or even acknowledged. It took a while for her to find professionals who believed her, who were helpful and made her feel heard and seen.
“It is frustrating and can be very invalidating. I know my pain is real now and medical gaslighting, misdiagnosis, and ill-treatment are unfortunately a big part of the diagnosis” ~ Iman
Although feeling fortunate to have access to a worldwide specialist in gastroparesis, Allie feels the general medical system gives her a lot of anxiety. She remembers of a time she had a flare in GI symptoms, where her GI doctor didn’t want to test or treat her because he assumed she just wanted to lose weight. Lauren speaks about how she “constantly feels ignored and that [her] symptoms aren’t serious.” Being brushed off countless times, she’s suffered from wrong prescriptions, wrong results, and being told the ER wouldn’t help [her]. Hayley speaks of how she’s “been called a drug addict, dramatic, not sick enough, too sick, lazy, overweight, too young, trying too hard, too happy to be sick, not having enough symptoms, doesn’t meet criteria, results are normal, probably just gas and so much more.”. Nia reports she has had more negative than positive experiences, where advice given by professionals was that she needed to “exercise more, drink more water and get more sleep” because they didn’t believe her symptoms were that serious.
When medical gaslighting happens to an individual, it becomes very difficult for them to place trust in medical professionals. Eli in general now feels anxious going to see new doctors for fear the process will be tedious, unhelpful, and at worst, ‘gaslighty’ and dismissive. Several people within the community express the concern that once you have been gaslighted once, you often fear it will happen again. The trauma that comes with medical gaslighting can also make us not trust those who are supposed to help us and even makes us doubt ourselves. It is extremely easy to be gaslighted and it just means they have to do more in order to be seen properly. Being misdiagnosed several times, Nia only managed to find out what was truly wrong when she pushed or advocated for more tests. And it’s rather sad that she even has to do that in the first place.
Advocating for our health is something many people within the chronic illness and disabled community have had to learn to do and frankly, it’s exhausting. Nia now only feels comfortable expressing concerns with doctors because she now has the confidence in standing up for herself when she’s being dismissed. It can sometimes be hard to advocate for ourselves, to express our concerns, and to feel heard by professionals because of how poorly we have been treated before. But many of us have learned the importance of saying how we feel, to let medical professionals know what we need as we know ourselves best. Many of us are expert patients, meaning we have significant knowledge of our disease and additionally, what treatment we would need and/or seek to help make our lives even slightly more manageable.
“I have learned to be my own advocate because if I am not, who else will be?” ~ Lauren
Hayley states medical gaslighting is a never-ending cycle that makes the disabled community scared to reach out and are overly traumatised by it. Not many people realise how prominent it is in the process of going in and out of the hospital, dreading going to appointments in fear of being gaslit and just how it will impact our mental health. It is a serious problem that needs to be acknowledged and addressed because it happens way too often and makes patients feel awful when we already have to endure so much pain and have to live our lives with such serious conditions which prohibit us from living our lives to the fullest.
We deserve good quality care and we owe it to ourselves to bring up things we’re worried about. ~ Nia