Living with invisible disability – When friends and family gaslight you

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My friends and family have all been purged from my life, and all for the same reason.  Broadly put?

Gaslighting. Victim-blaming.  Bullying. 

Something my mother said to me as she was yelling once again about how right she was and how wrong I was, was that “EVERYONE says the same thing!  How can everyone be wrong?  You think you’re the only one who is right, and everyone else is wrong!  Majority rules!

That was probably one of her worst examples of gaslighting – where a person tries to convince you that you are wrong, that you are mentally deficient or mentally ill, that the problem is YOU, not them. 

In truth, they are the problem, and they are manipulating the situation. 

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“Majority rules” is a very flawed concept. But they were the majority and there were a lot of them and only one of me. “Majority rules” means bullying as far as I’m concerned.

Everyone in my life told me that I should:

Try harder.

Work harder

Stop taking these medications

Start taking this supplement

Try herbs and homeopathy

Lose some weight

Stop running to all those doctors!

Go see this naturopath

Stop wallowing in your illness.  If you didn’t think about it so often, you’d find you’re not sick at all

They all said:

Its all in my mind. 

I am mentally ill, not physically ill.

There’s nothing wrong with me that lifestyle changes and “better choices” couldn’t fix

That I my dogs deserve a better home and I’m a terrible person for not walking them enough.

That me using a wheelchair was attention seeking and me choosing to disable myself.

That I could eat much more than I said I could, because obviously, look at me, I’m obese!

And every other cliché that all of us invisibly disabled people who live with high impact chronic pain experience on the regular.   

They ridiculed my business.  They laughed and my bracelets and made fun of them. They treated it like a funny little thing I do, rather than a successful business that was keeping me and my two kids alive.

Every way they could belittle me, they did. For fun. 

I don’t need extra stress. No matter how I would tell myself to let it bounce off, I reached my limit. I’d had enough.  When my mother told me I hadn’t been there for her when my father died. That I’d only come once a week, when in fact I’d come to the hospital every second day, and for 11 weeks I destroyed myself going to and from the hospital. My life was nothing but visiting the hospital and then recovering from that effort. One day I’d go, the next day I’d recover.

My sister never went at all. She flew into the country for nine days and couldn’t even wait for my father to die before she flew out again.  THAT was OK with my mother.  But me? I hadn’t done enough.

I called her every day. I spoke to her every night, to let her talk if she needed.  I listened.  I was there in every way I could be. And it caused me a lot of pain and it made me much sicker. It took months for me to get back to where I was before my father was hospitalised.  Finally I realised that no matter what I did, I would always be the bad kid and my. ster would always be the good kid. And I had had enough of trying to please the unpleasable. 

It hurts when it comes from people who don’t know you very well.  It hurts much more when it comes from the people who are closest to you.

And the best part?  I am not like this. I am never like this. I’m sure I was when I was younger, I’m sure I did my share of nasty things and made my share of bitchy comments.

But I grew out of it. Long before I got sick.  I decided to be an empathetic, caring person somewhere around 30 years old, I think.  Long time ago. 

My friends and family never grew out of it.

My mother is very easily led. She has always favoured my sister, because they are similar people. My sister manipulates her, and my sister is a natural born bitch. My sister cares about no one but my sister.

My mother sees my sister as perfect and me as the problem child. Always has done.

So, it wasn’t hard for my sister to convince my mother that I’m mentally ill and not really sick at all.

This does not excuse my mother for treating me the way she treated me. 

Back to her comment:  EVERYONE believes these things, how can EVERYONE be wrong, but only you are right?

“Only you” meaning me.

Well, for a while it had the desired effect.  I questioned.  I wondered why all the people whom I’d loved and trusted had turned on me and were saying all the same things.  I wondered what I’d done wrong.  To deserve this horrific treatment. 

Was I the asshole?  Was I wrong?

I questioned. I meditated. 

And I realised that I am not wrong.  Its simple math.  Majority opinions only rule when ALL the people involved are equally educated and informed.  When the majority is uninformed and ignorant, their vote no longer carries any weight.

NONE of my 10 friends and family members even know what my list of diagnoses looks like, or how those diseases actually affect me, day to day.  They don’t know the symptoms; they don’t know the prognosis. They don’t know the seriousness, or otherwise. They couldn’t tell me which disease is most painful, which disease affects my mobility the most, which disease is most dangerous, which disease is most likely to be the one I die from. 

NONE of it. 

They don’t know this stuff because they don’t want to know this stuff.  They want to judge and preach.  They are 100% ignorant of the reality, because their belief system “If you eat right and exercise, you’ll always be healthy” is the most important thing to them.

More important that the medical facts. 

More important than me.

Some people cannot handle having their belief system questioned. They will respond with cruelty and spite if you question them.

I didn’t ask any of them for help or advice. I can tell quite easily who believes me and who empathises with me, and none of them did.

I can tell by the way they look at me, I can tell by the things they say to me, or don’t say. The tone of their voice. If they dismiss me when I’m talking about my disease, if they cut me off and change the subject back to themselves.  If they compete and play “my pain is bad TOO!”.  If they constantly offer unwanted advice which is quite honestly, completely ignorant claptrap.  (Try essential oils!  It’ll cure you!)

I never engaged with them, I never talked about my illness with them, unless they asked.

Even when they DID ask, it was only to provoke me. This is what happened when my sister DID ask one day.  She said, “How was your MRI?”

I told her the pituitary tumour was confirmed and hadn’t grown, which was great news.  That was all I said, and I always end on a positive. One sentence.

She sighs deeply and says “Oh my god the TUMOUR!  Do you have to be so DRAMATIC?  So it’s basically nothing, totally incidental finding”

(She’s trying to sound clever by using medical speak – incidental finding – and she is dismissing my very non-harmless, very non-nothing tumour as “nothing”.  More gaslighting.)

I shut up and wished she would leave.  Once she starts being bitchy, she does not stop. She has days like that, she’s mad at the world and she takes it out on everyone around her. I hate being around her when she’s like that, and when she’s in Australia she’s almost always like that.

I am not her punching bag.  I do not engage – it only takes one to start a fight, but  takes two to continue it. 

I ask her about safe topics like how her lunch the other day was.  She continues to make digs at me, because that’s who she is.  (‘Why don’t YOU get out of the house more?  Maybe get dressed into something other than track pants!  Put some make up on? No wonder you’re alone”).

An hour later she finally leaves, and I’m glad she’s leaving the country.

Rarely people asked questions, but usually that was used as an opportunity to give me judgement and advice.  I kept my answers short.  “Yes, I have an appointment with rheumatology next week. No neurology is not for two more weeks”

They feigned interest and rolled their eyes.  “Why do you see ALL THOSE DOCTORS?”

I could try to explain that automimmune diseases can affect almost any part of the body, and therefore someone with significant autoimmune disease(s) would cross specialties and need many specialists to manage various body systems. Its just the way medicine is organised, into silos of bod systems.  I could start a conversation on how there should be a speciality for autoimmune disease but they don’t care and don’t listen.

The openly called me a hypochondriac.  I fell into the trap of trying to “prove” how sick I am, which is the worst trap to fall into. The more they disbelieved, the more I would cite test results, scans, doctors’ consults, and the more than allowed them to say

“OMG, you see TOO MANY DOCTORS!”

Always dismissing me. Always demeaning.  Always saying “I’m just trying to help.”

People like this are committed to their beliefs, they will not change their point of view. They are like cult members or true believers, and they know they are right. And they are “helping” with their terrible advice.  When you don’t take this useless, or even harmful (drink your own urine) advice, they say you must WANT to be sick. You don’t WANT to get well.  You ENJOY the attention (what attention?  I spend all my time alone and I have no social life).  You ENJOY the medical drama.

That’s my family. That’s the people who were my friends.

But here’s the math.   They know nothing about my illness, diagnoses, or prognosis. Therefore, their opinions are not based on fact. They are based on their beliefs, which are wrong. 

Let’s say we’re talking about the life cycle of a gnat. You have 101 people in the room, one of whom is an expert on gnats the others are not experts. 

100 people say the gnat is green in its larval stage. 

One person says its blue. 

Your immediate response is to agree with what most people think, the larva must be green. Because the majority say so, it must be correct, right?

But wait. Those 100 people know nothing about gnats. They are guessing.

The ONE person is the expert. They know the facts.  They know the larva is blue.

And thus, majority does not always rule.  Just because MOST [people think a thing, does NOT make them right. 

When people judge me without knowing anything about my illnesses, they are wrong.  It doesn’t matter how many people judge you based on bad information or a lack of information. They are ALL wrong.

Even if it feels like everyone is against you, they must be right…they are not. They are ignorant. They are cold and judgemental and cruel. 

I’ve had people online send me nasty messages saying that if all my friends and family abandoned me I must be a truly horrible person. That is also not true.

I am the expert in me. I am the person who knows. I am the source of information.  People can only learn about me, from me. People who refuse to listen to me, learn from me, and respect me, have no place in my life.  

And that’s why I have no close friends and family. 

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1 COMMENT

  1. I think we are our own best advocates and our own best filters. I’m afraid I have to disagree with my sons on several issues. I tell them how I disagree with them, and then I let it stand. I love my sons no matter. I hope they love us as well. Disagreements warts and all.

    rick

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