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When I Experienced Medical Gaslighting During an Asthma Attack

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Having a chronic illness can be tough. You can’t even begin to explain to anyone what it’s like to have something looming over your head all the time — like a cloud hanging out over your head or like having a shadow following you. You think of all those things you love to and get reminded very quickly that you often can’t do them anymore. Then you have the attitudes of other people to contend with.

Seeing memes where people overcome a disability aren’t always empowering.

Yeah, it’s wonderful that a person can overcome something and do a sport or job they love. But not everyone has that kind of luck. Before my asthma became as bad as it is now, we’re talking over 10 years ago, my life was totally different. I had asthma but it was easily controlled and only got bad occasionally. I used to cycle five miles to and from work or college. I was a typical-looking young woman who loved going out with her friends and shopping. I was living in my first ever home (an attic conversion, two flights of stairs; no chance of that now!) and should have had my whole life ahead of me. It all changed after getting a bilateral pneumonia — that was the start of the descent.

I’m not the kind to moan about how things are; I am grateful that my younger years could be filled with those wonderful experiences. I wasn’t always the healthiest and have had medical problems since childhood (they thought I’d be in a wheelchair before I was 21 thanks to medical issues, spinal deformity and HSP). As a kid, I couldn’t run and had problems walking. The school used to gaslight me and say it wasn’t anything but me being difficult. They convinced me that I was just useless and lazy. One teacher used to tell my mum I was just doing it for attention or to get out of hard work. I’m lucky as my mum fought in my corner and got me out of there, but the damage to my mental health was done.

When you get a diagnosis of any mental health issues, soon enough that becomes the root of everything and the doctors often won’t see past it until they decide it’s not “in your head.” Sometimes I have presented to the Accident and Emergency department with asthma attacks but been triaged as having panic attacks, left to “calm down” and then found seriously ill. One of the worst experiences in a hospital occurred because a consultant was so convinced I was just “crazy.”

I was 26 years old and had been admitted to the Respiratory High Care ward with a bad chest infection which triggered my asthma. I was so tired and my body ached. The consultant strode in with his team, completely ignoring all the notes. He pulled my oxygen off and stood talking to his team about me like I wasn’t there. “This woman regularly presents to us with what she says is asthma. My personal view and looking at her lung function tests is that her asthma is mild and this is a psychological problem. Stop all her medication and see how she goes.” He then left me. Within half an hour I was struggling to breathe, but I wouldn’t let the nurse put my oxygen back on until I was unable to fight. Another doctor came and restarted everything, but I was shaken up.

A few days later, I saw the consultant again. This time he spoke to me. “Why did you reinstate your oxygen? You don’t need any treatment, you just need to stop this attention seeking behavior.” I explained that the nurses had reinstated the oxygen and got another doctor to look at me (because in his mind, I had apparently only done so because I didn’t like what he’d said!) This was in front of everyone on the ward, nurses, HCAs and patients. He then said he was throwing me out and that if I “showed up on [his] ward again, [I] would get sent straight to psych.” He stormed off after this and I broke down.

I’m not one to cry for no reason, but I felt so bullied and cornered. My mental health almost made it open season to ridicule me in front of others. Everyone in the ward came in and hugged me, but I felt so low. The letter they sent to the GP following an admission was full of lies. My CT scan had been “misplaced” by the consultant and the new LFTs were dismissed as well (I got a copy of those myself so it couldn’t “vanish”). I felt so low, demoralized. Once again, my mental health was used as a way to make me feel like my illness was in some way my own fault. I’ll be honest, as soon as I got home, my then flatmate caught me attempting suicide. He held me as I sobbed and screamed. Without him, I’ve no doubt that I wouldn’t have looked back or stopped.

At that moment it dawned on me — none of this was my fault. And if you’ve been put through similar, none of it was yours either.

Our disabilities as diverse as we are. Some are “overcome;” others are harder to get through. We aren’t failures for not being able to do exactly the same as the people in those memes. We should be kind to ourselves and other people, remembering we don’t always know what they’re going through but we sure as anything know our own bodies and limits. What makes us strong is physical endurance, but what makes us mighty is our mental ability to keep going, even on those bad days or to stand up and tell someone who has tried to gaslight us that they are wrong.

Oh and if you’re wondering, I put a formal complaint against the consultant; he’s no longer practicing. My friends and family supported me through the whole process and I am thankful for them.

Getty image by Liderina.

Originally published: November 11, 2018
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