If You're Newly Disabled... It's Time to Learn About Gaslighting
Whatever the disability or chronic illness - gaslighting will be something you have to endure. A discussion on how and why gaslighting happens, how to cope with losing friends & finding your tribe.
If you’re newly disabled - whether by Long Covid or any other chronic illness - you need to prepare yourself for gaslighting. Doctors, healthcare workers, friends, family…. You will be surprised how much it’ll happen. Let’s look at why it happens, how to cope and how to find your tribe.
I will be honest - before becoming disabled I barely knew what gaslighting was. It had happened to me but it wasn’t something I was acutely aware of. That changed in a hurry when I lost my health.
People who are temporarily abled always seem to think they won’t become sick - or if they do they will be surrounded by love & support, by easy answers and “fixes”. They believe they will be the exception. Unfortunately that’s rarely the case & this realization can be quite jarring for people.
The reality is people will gaslight you. They will doubt you, disbelieve you & talk down to you. They will offer “suggestions” under the guise of helping - but those suggestions are generally twinged with an attitude of ‘I don’t believe it’s as bad as you say.’
You will be told to try harder, asked repeatedly if you’ve considered this fix or that potion. You will waste tons of energy defending yourself and explaining why whatever solution being proposed won’t actually work for you. It’s exhausting and drains you of precious spoons.
When it comes from doctors and healthcare workers it’s normal to feel frustration and deep despair. After all - these are the people you’re relying on to make you better. If they don’t believe there’s anything wrong with you then you aren’t going to get much help.
That said I find it easier to steel myself against various professionals - it’s much harder when it comes from friends and family. From people who should love and support me unconditionally and have my back.
I’ve found there’s generally two ways to cope. You can pretend it’s not happening and apologize. You can placate people by telling them you value their suggestions and will consider them - even when you know they won’t work. You can tiptoe around their feelings. This MAY keep the peace for awhile - but will more than likely take a huge toll on you.
The alternative is you can push back. You can remind them that your illness is very real & that you’ve already tried and/or ruled out what they’re suggesting. You can stand up for yourself & make it clear you understand your health better than anyone. You can thank them for their advice but ask them to respect you when you say something won’t work.
This is (in my opinion) the healthier way to approach the situation. But be prepared - you will lose people this way. You may lose everyone. It will feel like a horrible choice between preserving your mental health or preserving relationships. We often can’t have both.
The sad truth is people do not want to face the realities of chronic illness. The vast majority would rather write us off as liars, fakes or failures than accept that some illnesses have no fix. They would rather us pretend their behaviour is acceptable & suffer in silence. Plaster a smile on our faces and make them feel better so we don’t challenge their faulty assumption that all illnesses have a fix.
Doing this ends up compounding the pain of living with chronic illness. We already have to sacrifice so much - our ability to work, socialize and exist in a pain free body. We deal with daily grief & loss. When we also have to sacrifice relationships it causes deep sorrow.
It’s not fair and it’ll never be fair. But until temporarily abled people are willing to genuinely listen to us and accept that we are trying as hard as humanly possible - relationships will continue to fracture.
If this is happening to you please know this - it’s OK to set boundaries. You don’t have to make yourself small just because you’re sick. You aren’t failing and you aren’t “less than”. Please don’t ever doubt that.
If someone is making you feel that way I always recommend trying to talk to them - some people will surprise you. Sometimes the gaslighting is unintentional and the person well meaning. Occasionally when you explain your conditions & boundaries people will respect them.
Unfortunately those people are often in the minority - but when you find them you cherish them. One open minded ally will ease the pain of losing so many other people. Nurture those relationships and bonds and thank allies for being willing to listen and support you.
If you’re experiencing this - please know you’re not alone. Many others have fought these battles & continue to fight them everyday. Digital connection becomes invaluable because you will find your “tribe”. People who get & understand the realities of being disabled.
At first it may not feel like a worthwhile substitute for in person connection - but I promise that with time you will come to love and cherish the friends you make in the digital realm. They will truly GET you & you will support each other.
I share this from personal experience. I’ve spent alot of my life apologizing for my illness, hiding the true extent of it and being afraid to advocate or speak up in the face of mistreatment. And it made me sicker. It made me start to resent myself and the people around me. It made me small.
Once I stopped hiding and started being my authentic self - my body thanked me. I’ve lost people but I’ve also found allies. I’ve found my tribe and I’m better off for knowing my worth and being willing to advocate for myself and others like me.
So hang in there. Stand tall and proud and remember your worth is NOT dependent on your health, economic status or anything else. We all have value and unique perspectives and we can all help and support each other. Look for the helpers, the allies and the empathetic souls. Do this and you will also find your tribe.
Snaps, claps and empathetic tribe-member here. You've neatly described what every caregiver goes through, too - I hope you don't mind me extending your reflections to include carers here. We're given solutions/advice /suggestions/ 'have-you-tried this' thoughts all the time. It's rationalised by saying 'they mean well' - I get that but fielding everyone's opinion is exhausting! Using our limited/no energy to explain why it won't work/that it's been tried before feels like a non-stop job! So, I agree it's important to set boundaries early. The good supporters, friends & family are the ones who meld into your routine AS IT IS; they ask how we want things done or say, 'I don't know or understand, so you tell me what you need.'
The trouble is that a lot of people gaslight, think they know a 'better way', or want to be the one with a 'hero' idea that 'saves' you, perhaps so they can tell others what a good deed they did. These folks just can't sit in the difficult discomfort / challenging times with us because it's too uncomfortable.
So, lots of resonance, hugs, and I hear you!
100% to all of this. I’ve been disabled my whole life but I never knew what gaslighting was or how much it applied in my life until the last few years. Thanks for writing about such an important topic. Wish it wasn’t something any of us had to deal with but at least knowing about it, having some tools to help deal with it and knowing we’re not alone can help.