The Corona virus has been on the loose for seven months now and, in that time, has infected millions of people. Throughout the pandemic, certain key statistics have been reported, around the numbers of deaths and the numbers of recoveries. However, these statistics miss out a large group of people, who after months of having recurring symptoms, are still sick – and unfortunately are struggling with medical gaslighting.
I am seeing more and more stories coming from these ‘corona virus long haulers’, as they call themselves, who are facing many of the challenges familiar to those of us with chronic invisible illnesses – including medical gas lighting. Having been through, and processed many of these experiences, I feel it is important to share what I have learned from my experience of dealing with doctors, in the hope that it might help someone in a similar position.
Medical gaslighting
Gaslighting is the repeated denial of someone’s reality, in an attempt to invalidate them. Medical gaslighting is when a medical professional downplays or denies a person’s symptoms and tries to fob them off as something else. They attempt to re-frame your experience of your body in order to fit into the diagnosis they think you should have. For example, many people with chronic fatigue syndrome or fibromyalgia are repeatedly told that they have depression or anxiety, when in reality they have a physical illness. And, given that this involves a lack of trust in the patient, it is frequently trans people, people of colour and women who suffer from medical gaslighting.
This invalidation or misdiagnosis can be traumatic or even abusive, leading people to be given treatments that do not fit their actual illness. By being told an illness is ‘all in your head’ it delays a proper diagnosis, which can be crucial in managing an illness or delaying deterioration. And, in the case of invisible illnesses, it takes an average of five years to get an accurate diagnosis. It also completely invalidates your personal experience and causes you endless confusion as to why you are struggling.
My experiences with medical gaslighting
A previous post explores my experiences of being sick and undiagnosed, should you want more detail on this issue. But I too have spent the entire time I’ve been sick being gas lit by medical professionals. Just a couple of examples: there was the time when I went to my GP and asked about Postural Orthostatatic Tachychardia Syndrome (POTS) because I felt like testing my body for this would give me some more insight into why I felt so dizzy standing in the same spot. My doctor sneered at me and told me to stand up and after about ten seconds said “well you didn’t faint!”and told me I didn’t have it.
Two years later at a private chronic fatigue clinic in the Netherlands they finally did the proper test, a tilt table test with proper equipment. Turns out I did have it, and after further measurements with a heart monitor I found that my heart rate went to 178 bpm in the shower just from standing upright. Had I known that far earlier I could have had access to the few things that help me to deal with POTS, but my GP chose not to believe me and told me it was all in my head, so I felt like my dizziness was craziness and hyperchondria, not the very physiological condition that it actually is. I, and every other chronically ill person have thousands more stories like this which is heartbreaking.
Post-corona medical gaslighting
From the stories that I have read online, it seems that many corona long haulers are being told by doctors that there is no way they can still be sick. They are being told that they have anxiety or other mental health issues. They are being given the advice to exercise and recondition, which, if they have ended up getting a long-term illness can be very damaging.
All of this goes directly against the fact that we know, categorically, that a virus such as the corona virus is highly likely to cause long term health effects. The ebola epidemic and the SARS epidemic both caused many people to have long term health effects, and even further back, many polio outbreaks subsequently caused outbreaks of ME.
Besides that, there is sufficient evidence that viral infections in general lead to many long term autoimmune illnesses. So, it should come as no surprise to doctors that people are suffering long term effects from the Corona virus. Yet, despite all of this, many corona long haulers are now being gaslit. Being told they have anxiety when in reality they probably have a long list of illnesses included ME/CFS.
Top tips for dealing with doctors
As I said before, medical gaslighting is nothing new. I have experienced it many times over several years and have built up some key techniques to help me find the right medical help. So here are some top tips for dealing with doctors:
1. Trust yourself
You know your body better than anyone else. You have lived in your body for your whole life. If you think that there is something wrong, and something unusual happening, you are probably right. Trust yourself and your experiences; you know how you are feeling better than your friends and family, and certainly your doctor.
2. Start a symptom journal
As soon as you start realising that your body is not working quite as it should, start keeping a symptom journal. It doesn’t have to be anything fancy but note down a few basic things such as what and where the symptom is, how long it lasts, and its severity. This is very helpful evidence to bring to a doctor’s appointment. If you have proof of how regular your symptoms are, and when and how they occur, it all helps to build a case towards a diagnosis. The more you can show your doctor, the more likely they are to believe you.
3. Find the right doctor
Find a doctor who listens to you. They don’t have to know everything about every illness, because realistically that is not possible. But you need to find a doctor who is willing to listen to your experiences and take them seriously. Even if the GP you are seeing has been a family doctor for years, if they tell you that you are making up symptoms, it is not worth staying with them.
You need and deserve someone who will do everything they can to help you, and research what they don’t know. It isn’t always easy to find these doctors, but they definitely exist. I would also advise you to limit talking about your mental health at these appointments, as doctors often like to pinpoint any misunderstood illness on your mental health and not look any further into potential illnesses. This is a terrible reflection, but sadly it is the reality, in many cases.
4. Find yourself a community
Find people in a similar situation to you, talk with them and share advice. There are thriving communities of disabled people and people who have long term illnesses, all over the internet, in forums and on social media. Sharing experiences is really useful, and these places have been far more informative for me than any doctor I have ever seen. People in similar situations know what you are going through and are often going through it too, so they will be able to empathise in a way that others cannot. Corona long hauler groups already exist, as do chronic fatigue, and chronic pain support groups. In these spaces you don’t have to have a diagnosis to get support.
5. Research research research
There is a stigma – and sometimes, quite rightly – against researching illnesses and symptoms online. However, for many illnesses, it is the only way forwards. Of course, you should never assume the worst – we have probably all discovered, through internet research, that we have all the symptoms of something that will lead us to certain death! However, instead of panicking, fully research every symptom, as well as the autoimmune and other illnesses (such as ME/CFS) that often follow pandemics and epidemics. That way you are informed about the potential illnesses you could have, and are able to tactfully steer a conversation with the doctor.
Don’t be afraid to use this information to ask questions, make suggestions about potential treatments and referrals, and generally show that you have a good understanding of your situation and will not be fobbed off.
Thorough research also allows you to understand the process and the difficulties of getting a diagnosis of a long term invisible illness – so that you are not disappointed when, in all probability, you do not get what you need on the first attempt.
6. Allow yourself to hope and allow yourself to grieve
When you became sick with corona virus (or whichever illness it was) you probably didn’t expect to be sick months later, or to have your life turned upside down by illness. I don’t think any of us really ever do expect that. In which case, it is only natural that, after a few months of being sick, you feel strong emotions.
It is okay to grieve for lost health; it has a huge impact on your life, and it is healthy to recognise and process that. At the same time, there isn’t so much research into the corona virus, that you can’t allow yourself to have hope and to believe that you could get better again and that it might not necessarily be a chronic, or long term illness that you now have. Both of these emotions are important as they allow you to cope in the present and project positively into the future.
I want to end this article with the remark that my inbox is open, on any of my social media accounts, or through email, or my contact form, if you ever need someone to reach out to because you are in this position. Medical gaslighting is traumatic and can make you second guess everything and lose all confidence in yourself. Having a supportive ear to bend when you need it is always nice, and I am happy to be that supportive ear for people who need it. I’ve been through this and I know how much value there is in talking.
Links
- An article with personal stories from “Corona long haulers”.
- Long term affects of ebola virus
- An article about medical gaslighting
