Empathy begins at home

I went to the psychiatrist a couple of weeks ago. I see him every six months or so, usually to assure him that I’m fine and get out of there as fast as possible before he prescribes me more medication. I don’t want to go because I like to tell myself that chapter of my life is over, but I do want to go because I feel I need a safety net to stop me from falling back to the scariest place ever – the grotesque nightmare of psychosis.

I can’t complain about this doctor being a bad doctor, because he does seem to listen intelligently and he has a knack of prescribing medications that do actually help at the time and he believes me when I say I have side effects, which is quite unusual for doctors in my experience. As a prescription-writer he shines, but I have always found him breathtakingly dismissive of life events that are causing me distress. I guess that’s why he’s a psychiatrist, not a counsellor, so I can’t be disappointed in him not doing a job that isn’t his. It is interesting to me how his casual attitude towards my concerns highlights to me where it is that I need my pain witnessed and acknowledged.

He scanned the waiting room, looking for me, and I when I came over he said he hadn’t recognised me. ‘You’ve cut your hair’ he laughed. I stared at him, incredulous at this obtuse observation. ‘I didn’t cut it,’ I explained as calmly as I could, ‘it fell out.’ I restrained myself from punctuating the sentence with ‘…dickhead!’ He looked puzzled for a brief moment before realising I was referring to the tiny insignificant episode of having been through chemotherapy. The last time I had seen him I was wearing a wig. It was a bad, obvious wig and he was well aware it was a wig and I had no hair, but evidently not so aware that chemotherapy is a life event that some people find a bit unsettling.

I remember going to see him when I was newly diagnosed, rather anxious about what lay ahead for me. He seemed mystified as to why I would be concerned. ‘No-one dies of breast cancer any more’ he assured me with a wave of his hand. Even if that were true – which it’s not – there were still the small matters of having my breast mutilated and losing my hair I had to deal with. The news I had a large aggressive tumour had been unexpectedly sprung on me on the eve of my 44th birthday. My grandmother had been diagnosed with breast cancer at age 46 and died at 52. According to those charts that proclaim that 95% of people survive breast cancer, she would have been counted as a survivor because she made it past five years. I wasn’t reassured.

I was angry with the dismissive attitude he had to my legitimate concern and upset. But I suppose no more angry than I was with every other health professional I have dealt with who has failed to acknowledge my pain. The countless doctors I traipsed around for about six years in my late teens and early twenties, desperately looking for answers to the crashing tiredness and muscle pain that had brought my life to a halt. Being fobbed off time and again that it was all in my head, I was lazy and unmotivated, I needed to push myself more, everyone gets tired, everyone has trouble getting out of bed, it’s nothing, it’s not real, just stop the act.

None of them seemed able to consider the possibility that just because their tests were not able to detect a physical problem does not necessarily mean that a problem does not exist. The automatic assumption when a blood test comes back normal is that I’m a lazy attention-seeking time-waster who needs to be taken down a peg or two and told to get off my arse. Twenty years later Chronic Fatigue Syndrome and Fibromyalgia are still seen as ‘controversial’ diagnoses – in other words there is disagreement among health care professionals whether they exist or not.

I have never spoken to a sufferer of these conditions who claimed to have one day realised it was all in their head and snapped out of it. Some, including myself have tried to snap out of it, since everything would be so much easier if that were possible, but I’ve never heard a success story involving that approach.

Would it hurt doctors to simply acknowledge a patient’s distress and say to them ‘I can see you’re suffering. I can’t figure out a way to test for your problem, I don’t know how to figure out what is causing your problem, but I see you have a problem.’ Just witness our pain. If you can’t help us, please don’t make it worse by heaping judgement on us or waving us away like an annoying fly.

Another incident that stands out in my mind was a night when I was desperately depressed. I wasn’t exactly suicidal, but I was in a bad place. I had never in my life called a mental health hotline as I had never thought anyone could say anything to make the situation better, but earlier in the week a friend of mine had given me the number of a 24 hour hotline she thought might be helpful to have on hand. So, at midnight, fingers trembling, I dialled the number and haltingly explained to the operator that I was terribly depressed, unable to see my psychiatrist for a few weeks, already taking the maximum dose of my antidepressant medication, and worried I would soon reach the point of considering harming myself. I will never forget her response. Are you ready for it?

‘Well you sound fine.’

Because people always ring a mental health hotline in the middle of the night to shoot the breeze about how fine they are, don’t they? That night I realised I was utterly alone in my struggles. No-one can fix me or help me, I have to dig deep within myself and find my own strength and survival instinct. Just coax myself through the next minute, the next hour, the next day without relying on anyone else to remind me to keep going.

There are millions of us out there, all with a story of being turned away from the emergency department, belittled, mocked or labeled ‘hysterical’. People have died because they weren’t taken seriously. People have been forced into impossibly hard situations, trudging along day after day in dreadful physical or mental pain while being harangued for not going faster or doing it better or cheering up or having a better attitude.

I’ve never really wanted sympathy, just understanding. Just an attempt at understanding. Or an admission they can’t really understand. To be able to excuse myself from an event without feeling those judgey ‘could try harder’ vibes. To not be subjected to lectures from people I’ve only just met about my moral failings and advised to be more like them and ‘just get on with it.’

Everyone longs to be seen, heard, acknowledged and validated but it rarely happens. It would seem that it’s a very rare human ability to witness another’s suffering in a lucid and constructive way. Because it is so rare, I have stopped being disappointed by dismissive and ignorant reactions. I avoid discussing any symptoms with anyone. If I am sick and have to cancel something I am vague about my reasons or say I am too lazy to do it. (Beat them to it. That’s what they would think anyway). If I am discussing an issue with a doctor I am fully prepared for the possibility they may be insensitive or not take me seriously.

I wondered why so few people have the ability to recognise and respond to suffering in others, and I think it could be that very few people are able to extend that same courtesy even to themselves. Most people treat themselves appallingly. ‘Come on you idiot, get up, get over it, suck it up, I can’t believe you ate that you fat bitch.’ If that’s their internal dialogue, it’s no surprise they have little patience for others. I don’t internalise their impatience and frustration, because most of the time it is them projecting their judgements of themselves onto me. Looking to others for understanding is trying to drink from a dry well. They ignore their own ailments, stuff down their own feelings and berate themselves for every foible.  They have no compassion to spare.

Once you learn to witness your own pain and truly acknowledge to yourself that you you are struggling, much of the need to be understood by others evaporates. If you can be kind and compassionate to yourself, not only does that help and sustain you, but it is good practise for dealing with your fellow humans. If you are accepting of your own pain, you can recognise it in others. If you are used to talking to yourself in a compassionate way, it will come naturally when addressing another.

Health care providers are people too. Most of them are sincere. Most of them think telling you to snap out of it is what you need to hear for your own good. Some of them really want to help you and are frustrated by your apparent failure to cooperate. The people you meet who drop lines like ‘oh I don’t have time to get sick’ are not necessarily simply arseholes, but people who deny themselves some desperately-needed nurturing. People can’t give you what they don’t have for themselves.

Also, I am seeing that the less judgey and hard on myself I am, the less of that kind of attitude I get from others. A lot less. I’m not saying I don’t push through or hold myself accountable, but I maintain a standard when I speak to myself. I would never say to another person ‘look at your disgusting thighs’, or ‘you’re pathetic’ so I don’t say that to myself anymore. Sometimes if I am dismayed by another person’s behaviour I might ask myself where I do that same thing, but with an attitude of curiosity, not condemnation.

It’s a simple shift but requires awareness. I check in with myself a couple of times a day and ask how I’m feeling emotionally or physically. If, for example, my knees are throbbing, I just observe that, takes some deep breaths, relax, reassure myself that everything is okay and maybe send some love to my knees. It only takes 10-20 seconds and can be done anywhere. It just takes the will to remember to do it. But it’s my responsibility to take care of myself, so I tend to remember at least once a day.

You deserve to be acknowledged and attended to. Allow yourself to receive kindness from yourself.

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