Living with an Invisible Disability 101: Being Yourself, Speaking Up, Being Judged, Being Hurt

 

We cannot be anything but ourselves.

I know some incredible people. Having a chronic, painful, and lifelong disability, I am at home a lot, so I use social media as a tool for thinking, discussing, and throwing ideas around, especially ideas I want to write about. I have met some great people who also live with and write about disability, who remind me I am not alone. My social media friends help me to clarify my own positions, point out aspects of issues being discussed I may not have thought about, and show me where I can do better. I am grateful to them, especially as my diagnosis came a long time before the internet, so I know what real isolation feels like.

As I’ve re-entered the writing space (after some years away) and become more comfortable talking about my lived experience of disability I have, disappointingly, lost several ‘friends’. It has been hurtful and painful. Invariably these were non-disabled people who I suddenly became aware had expected me to play a ‘role’ they felt comfortable with. In one case, it was the role of the poor sick woman – then they could show largesse, give me castoff clothes and possessions, or sometimes treat to an outing I couldn’t otherwise afford. I was not ungrateful, but what I actually wanted from them was equality and respect – they were unable to give me this, instead becoming offended when I pointed out how disempowering and infantilising their attitudes felt to me.

They also criticised my social media use, claiming that in speaking with others about issues close to my heart instead of simply sharing lame jokes and cat photos I was ‘making myself vulnerable’. To what? My friends knowing who I am and how I think and feel? I don’t have thousands of facebook friends, only people I feel safe with. I use this blog to talk to the wider world.

Amongst fellow people with disabilities, I’ve battled the assumption that because I have a husband and some security (very hard won, incidentally) I am ‘better off than them’ and should therefore be available to them whenever they need to vent, or have a problem. On one recent occasion, one even demanded I send my partner over to fix their plumbing (and no, he is not skilled in this area. And has been quite busy this past eighteen years acting as my carer and building our house).

One way I try to support others is to try not to make assumptions, to talk about myself and MY experience in the hope it might help, rather than giving ‘advice’. But that gets me into trouble too. Recently I suggested someone talk to their doctor about a pain management plan. (I have a lot of experience with this, both as a chronic pain patient of almost four decades, and, previously, as a nurse with some training in anatomy, physiology, and pharmacology.) My ‘friend’ became angry, and accused me of ‘gaslighting’ them, which astonished me. I responded, ‘No, I am just having an honest conversation with you’. Bottom line: they didn’t want to hear about possible solutions, they just wanted a sounding board for endless complaining that achieved nothing besides creating more distress for both them, and those of us watching on.

It’s okay to want to vent occasionally, and chronic illness is a hard call and we DO sometimes need to ‘let it all out’. But to do so as a monologue without end and expect others to keep listening, then take offence when they participate in the conversation is, to my perception, actually abuse. I can listen and empathise, but I can’t do it forever. I have my own problems. And sometimes I actually have knowledge to impart.

As a writer in a public setting, hostility can come from all sides, and it gets worse the more you stick your head up over the parapet. I have come to feel this reaction is proof I am ‘hitting the spot’, and it makes both professional victims and do-gooders uncomfortable. But, ultimately, I can only speak my own truth. And I refuse to apologise for demanding a basic level of respect for the work I do, the difficulties I have endured, and the knowledge I have.

I cannot be anything but myself. I cannot dumb myself down to make others feel better about themselves. And I cannot give more than I have in reserve.

Loser

My disability is not readily visible, but I have been known to jokingly refer to myself as a ‘loser’, parroting the sense of worthlessness society in general, and other people, regularly foist onto me. No level of achievement – even an MA and publishing several books – has changed this. (Of course, I’ve always loved the song, ‘Loser’. Being labelled as a burden to society DOES bring up the idea, ‘So why don’t you kill me?’ as an obvious retort.)
But do I feel like a ‘loser’? Not on your life!
I know what I have endured, and survived, and the much worse outcomes I have been able to head off through a combination of consulting with knowledgeable professionals, proactive self-advocacy, and active self management of my health problems. I was told at 23 that I’d be using a wheelchair by 26, and that i should just ‘go home and stop trying to live a normal life’. Many years later, I am still walking – with some difficulty, at times, but walking nonetheless. And driving, swimming, writing and publishing, and playing an instrument. People can judge me all they like, call me lazy, or a malingerer, or a drain on the system, but I know what I have achieved and refuse to bow to being judged by people who have no idea.
Relationships can be tricky too. I had no trouble finding partners when I was younger but once they got a glimpse of the realities of my disease and how it affects me most ran a mile. Memorably, one asshole actually referred to me as a ‘cripple with no future’. Vomiting and fainting from the side effects of medication, needing assistance with dressing and getting around, battling the depression that comes with chronic illness and endless social censure, having well times followed by periods of being bedridden and in agonising pain – all of these things are difficult for loved ones to live with.
So for many years I DID believe I would live and die alone. That nobody would see enough value in me to walk this path beside me. Then I met my partner, who has been my rock for 25 years. Miracles do happen.

 

Stop Biting The Hand That Feeds You
A friend recently lamented that she was being left out of social gatherings, that friends chose to spend time with her alone, but when fun times were in the offing, invited her ex and not her.
I wrote back:
‘I’ve been where you are, sweetheart. You need some new friends. Move out of your social milieu and start again with new people. Staying where you are is just creating mental torment. You deserve better. Stop biting the hand that feeds you’.

My yoga teacher gave me two posters I have stuck up where I see them first thing every morning, and I have used them to enact just such a change in myself. Survivors of abusive and dysfunctional childhoods find it hard to set boundaries, and when we do people get annoyed. But such people are not your friends anyhow if they do this. There is nothing sinister about clear boundaries.
The posters say:
‘Once you learn how to be happy, you won’t accept being around people who make you feel anything less.’, and
‘Keep people in your life that truly love you, motivate you, encourage you, inspire you, enhance you, and make you happy. If you have people who do NONE of the above, LET THEM GO.’

 

My friend is talented, educated and clever. But she is also ill, poor and damaged. That is our dilemma under capitalism. People with money look down on us, people without think we look down on them. And they exploit and then hurt us. It’s a lonely place to be.
My friend will be okay. And so will I.
The practice of self love and strong boundaries are what will set us free.

Living with disability, and all its attendant add-ons, is hard.

This is why we need each other.

Because we know the struggle, the discrimination, the lack of opportunity, the infantilisation, the casual cruelty.

But we also know humanity, empathy, love.

 

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