Diagnosis Story

Most of us resist labels. In an individualistic society we dislike being boxed in, classified with groups of other humans as if our stories are just the same as everyone else’s. Labels can restrict, altering others’ perceptions of us.

ADHD means ‘hyperactive’, ‘troublesome’, ‘difficult’.

Autism means ‘odd’, ‘low intelligence’, and ‘socially awkward’.

I think of the labels I live with. ‘Stay-at-home-mum’ for some means ‘lazy’. ‘Depression’ can mean ‘weak’, ’emotional’, and again, ‘lazy’.

Labels are freighted with associations, and this is why we fear them, because not all of those associations apply to the individual who wears the label.

Yet labels can also bring freedom. Freedom to be ourselves. Rather than always having to hide the things we struggle with, labels allow us some grace. Someone can explain that ADHD sometimes means they blurt out an inappropriate response. “I’m working on it, I don’t mean it personally. Please let me be me, and don’t reject me.”

I feared labelling my son. I did not want people to treat him differently, either by excusing behaviour or assuming negative things about him before getting to know him. But slowly we began to realise that the issues we hoped he would grow out of were not going away, in fact they were getting bigger, and having more of an impact on his life as he got older.

They were also having a greater impact on our family life. His anger is an onslaught, and rises with very little provocation. Far less unpleasant, but just as draining, is his inability to not interrupt, or to wait when he wants something.

Also troubling is the difficulties he has relating to his peers. He shows a noticeable lag in emotional development, and went through a stage of being called ‘annoying’ by all his friends. That seems to have passed, but he still struggles to get involved in games where his rules and ideas are not listened to. He wants control, and gets upset when friends won’t listen.

With high school approaching in September, we realised that he would need help. Homework demands will increase, and at the moment he has meltdowns over a single sheet of maths.

It is intensely frustrating to me that because he shows no educational lag, no one would take us seriously for a long time. If anything he has high intelligence, and is ahead of many of his peers in the classroom. For this reason, the professionals are ruling out ADHD at this moment. I’m not claiming to know more than they do about neurodevelopmental science. But I am an expert on my son. I have observed him, and lived with him, for ten years. I love him deeply. And the autism spectrum disorder which they are leaning towards just doesn’t fit, from my perspective.

Admittedly, he has some traits that flag up concerns – but these all remain in the social development side, and can be exhibited by people with ADHD also.

I’m finding it difficult to convey in brief appointments the feelings and instincts I have. It seems to me that the USA are much further ahead of the UK in terms of research and understanding of these issues, and have broken down ADHD into more streams. Here in the UK we recognise only three. One Dr in the US identifies seven types of ADHD.

Right now I know we have to go through the process. I have to pray, and trust, and wait for the professionals to check every avenue, even if they only rule things out in the end.

But it is my son, and I love him deeply, and I am afraid of them getting it wrong. I am anxious for him. I am anxious for myself, because of the freight of these labels. Autism (even mild) feels terrifying. What will it mean for his future? Will he be employable with that label? Even if it is only mild, and he manages to get to university and gain a first in science? Will it frighten people?

Even ADHD … what will it mean for his long-term relationships? Will anyone want to commit their lives to someone so difficult? So challenging? How will he be with his children? Will he be intensely involved one minute, then distant and engrossed in his work the next?

I know that worrying about the future is unhelpful. Each day has enough trouble in it. I tell my soul to listen to Jesus on this one. The future is in his hands.

But the questions drift like ghosts in the back of my mind. I don’t fully trust the professionals. I feel that the forms we fill in give only a partial picture. And how can a family’s life be condensed into an hour-long appointment?

The educational psychologist will evaluate him in school next week. And right now all I can do is gather information, evidence for what I believe, in the hope that someone will listen.

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Behind the emetophobia

Emetophobia is a fear of vomiting (or someone else vomiting).

I have suffered from it for as long as I can remember. I have encountered many who also suffer from it. A big part of it is shame, and a sense that you are somehow pathetic for not being able to just get on with being sick and then move on, like the rest of the population.

I have had therapy which helped me to overcome some of the fear. But I would still rather almost anything happen to me than catch a sickness bug.

I fear being sick more than anything else. (For some emetophobes the fear is broader – others vomiting near them, watching a vomiting scene on TV, even hearing or seeing the word written).

If you are like me, and fear being sick, it is quite possible that you share another trait with me – being a highly sensitive person.

An HSP has a brain which processes stimuli at a far deeper level than the average person. In real terms this means that experiences will be more intense, whether physical or emotional.

I believe this is why vomiting is something I avoid at all costs. Every single sense is stimulated unpleasantly: taste, smell, sight, hearing and touch. For the HSP it is an absolute bombardment of misery, and utterly out of their control.

No one likes being sick. Most people avoid it if possible. But for the HSP it is overwhelming.

Realising that this is part of who I am has helped. This is not going to go away, and that is discouraging. But the reason I hate it so much is not because I am weaker than everyone else, or just pathetic. It’s not because I did something wrong earlier in my life. It’s not because I suffered a traumatic experience. It’s just because of who I am.

And being highly sensitive, for me, has a massive upside. I am also incredibly sensitive to the many pleasant sensations that this world affords. I feel uplifted just by walking past a garden of beautiful flowers, or a peaceful river. I experience deep joy in watching my children play or holding my husband’s hand. And spiritual joys perhaps are easier to come by … one of the problems that seems to be exhibited by western Christians is a lack of wonder at the character of God. Yet I rarely struggle to find those emotions – perhaps they are closer to the surface than for the average person.2014-06-23 20.53.14

So although sickness is traumatic and awful, it really only lasts a few moments. It is far outweighed by the joys and pleasures that are just as intense and far more lasting. I just need to remember to focus on those, instead of fearing the worst all the time.

Why is life so hard?

“I had such a hard day yesterday. I felt exhausted and out of sorts. In the end I let the older two watch TV and had a bath while the little one played on the floor!”

“I’ve finally started to feel better after the flu, instead of utterly drained by the end of the day.”

Two comments I’ve heard from two friends in the past. And my inner response each time: “But that’s how I feel almost every day!”

I’ve been aware for a long time that I don’t seem able to cope with as much of life as many of my friends. I have put it down to various things … insomnia, post-natal depression, Crohn’s disease.

But I think I have finally found the real reason. I can’t put into words the sense of illumination that I experienced upon discovering the term ‘highly sensitive person‘.

I dislike the term intensely. It brings to mind shrinking violets, hot-house orchids, and people who fuss incessantly because everything isn’t ‘just so’.

But as I read through the list of characteristics, stumbled upon during an innocuous internet search, I could feel my inner self screaming with excitement: This is me!!

I have always reacted more intensely to pain and unpleasant sensations, crying more easily, and tiring more easily than many of my friends. I think deeply and intensely about everything, from which coffee to choose at the cafe, to why I am here and the meaning of suffering.

As I have thought through the implications of this trait, I can see how it has affected every area of my life, from infancy when my poor mother had to put my shoes on six times until there were absolutely no wrinkles in my socks, to my depression in my early twenties, to my current struggles as a mother of three.

I have always felt that unpleasant sense of being somehow less than other people, and perhaps this is because only 15-25% of the population would identify as highly sensitive, and among those there would be a spectrum. I suspect I am on the more extreme end, as I identified with every single trait, many of them strongly.

I think for people who are not very sensitive (which is about 40% of the population according to the research done by Aron), it would be very difficult to understand those who are. And I don’t think the chosen label helps very much with that. All it means is that my brain processes stimuli far more intensely, which means, practically, I will feel sensations and emotions more intensely.

The trait has been likened to autism (though it is not connected), in that the highly sensitive person will struggle to filter out things that the average person can. So an average person can filter out the extraneous noises in a room, while a highly sensitive person will have a harder time doing that.

What does it mean in real terms?

When I was a child, being hit on the head by a stray football in the yard would shake me up for a long time, even as a teenager. I would watch other kids laugh it off and carry on playing, while for me the pain throbbed, and I would be bombarded by emotions: shame and humiliation, especially as tears welled up in my eyes and I experienced fear that others were going to notice and laugh; an overwhelming urge to run away and hide somewhere quiet until my heart stopped pounding and the pain subsided; as well as a profound sense of shock. Netball was a tortuous experience. My instinct was always to duck rather than catch the ball, leading to mockery and disdain from my fellows and even, sometimes, the teachers.

I remember adults expressing extreme irritation and impatience towards me, as I began crying yet again, or failed to throw myself into whichever experience they had decided would be good for me, including running through freezing hail, mud and rain, flinging myself with abandon over a hard and heavy pole, and practicing throwing and catching a hard missile that threatened to slam into the side of my head at any moment.

I can see how, if you are less sensitive, a child who cries easily, startles easily, and is cautious must seem a bit pathetic and fragile.

I feel an intense pity for my child-self, and for any child who is trying to grow up in such an intense world, and a world so intent on admiring and exalting those who are bold and confident.

I’m hoping to write a series of blog entries about this, exploring how it has affected different areas of my life, starting with my emetophobia, in the hope that it will help others affected by the same trait, and also that it will help me process my life and find new reasons for joy in it.

Because although it is easy to see this trait as a negative thing (and believe me, I often wish I could be ‘normal’ and cope more easily with ordinary life), it has a wonderful flip-side. Although unpleasant experiences are felt more intensely and can lead to a life of avoidance, the highly sensitive person will also experience the highs and joys more intensely. They are quicker to appreciate beauty in nature, art and human expression. Sweetness is sweeter, joy is deeper, and pleasure more intense for the highly sensitive person. 49 Bute Park

I have often felt different for this reason too – my heart soars at the sight of mountains, oceans, sky, trees, flowers, babies. (Of course, this is not to say that the ordinarily sensitive cannot experience such joy also, just that it may be easier for the HSP to access these pleasures).

So although this trait comes with a hefty dose of negative, I wouldn’t exchange it. The joys are too great for that.

A study in fear

Fear seems to shadow me at the moment. More than shadow; its sickening claws have got a grip around my throat and I’m choking on it.

I’m afraid of sickness. A vomiting bug has been working its way through the family and so far, by the grace of God, only myself and BabyGirl have stayed well. But in an attempt to keep the sickness in check I’ve been on a cleaning frenzy, bleaching surfaces and washing my hands until they are raw. My house is probably the cleanest it’s ever been, but I’m exhausted and a bundle of nerves. I snap easily at the kids and my husband.

I’m afraid my daughter is going to keep waking me up at night. She had a nasty cold last week and woke three or four times a night, needing to feed back to sleep. She had one night of sleeping well and now she has another cold. I’m afraid she’s going to keep waking me. I’m tired, and tired of being tired. I want to feel normal for a while.

Even when she does sleep, often I can’t. I lie awake in the dark, turning over and over in my mind … have I cleaned every door handle, did I wash the baby’s hands before she ate, did I clean the toilet thoroughly?

I feel frustrated. I’d really got a handle on the fear through therapy and mindfulness, and I suppose just having a stretch without any nasty bugs in the house.

I feel alone. I want people to understand how every day is a desperate clinging to sanity and reason instead of giving into the impulse to clean everything in sight. In fact, often the only thing that stops me cleaning everything in sight is sheer exhaustion. I do what I can and then pray.

Where is the joy? That’s what this blog is about, isn’t it, what my life is aiming at? Joy …

I’m remembering that joy is not dependent on circumstances. It is deeper than that, bedrock.

Joy is dependent on Someone. I am realising that my fears are an indicator of how little I trust Him. Of how I cling to control, because I think I can manage things better than Him.

I turn to well-worn passages and I weep because this Saviour suffered so much willingly, undeservedly, and I can’t bear a bit of discomfort even for an evening.

I remember that he knows fear. He knows fear. He sweat blood, and still turned and faced what he feared most.

I do not know what tomorrow will bring. I may end up sick and miserable for a while. I may be well. I may sleep through or I may be woken every couple of hours. I don’t know.

But he knows. And I’m not sure why, but that brings some comfort. He knows. If I can calm myself and look to him, he will give everything I need to face whatever comes tomorrow.