Introduction – Growing up with Selective Mutism

Introduction – Growing up with Selective Mutism

I had selective mutism (SM) from as early as I can remember. Selective mutism is a severe anxiety disorder which prevents you from speaking in certain situations.  SM most often develops between the ages of 3 and 7. People with SM freeze in certain situations, and can’t maintain eye contact.  Sometimes their throat goes tight so they physically can’t speak. They also have frozen and stiff body language, and sensitivity to noise and crowds.  SM is sometimes mistaken for autism because the symptoms can make the person appear that way, but the person with SM is not necessarily autistic. They can also appear as though they have a learning disability because they are expressionless, but people with SM often have above average intelligence.

Because of my SM I was paralysed with anxiety, and therefore unable to speak outside of home. When I stepped outside the door, heaviness would descend on me, causing me to move slower and weigh me down more and more as I approached school.  Once at school I would find myself standing still and feeling paralysed.  I would walk to wherever I needed to go if I had to, then find the nearest corner or seat, and either stand or sit still watching others talking all around.  As far as speaking, the nearest thing I can compare is like a dentist injection where your face goes numb and the muscles won’t work.  It was like having one of these injections in the part of my brain that controlled my ability to speak.

I would stay like this all day.  I couldn’t ask to have my basic needs met such as putting my hand up to go to the toilet, or for a drink, or if I had forgotten my lunch money, or if hurt or bullied.   I couldn’t participate in lessons, or play with others in the playground.  Then, as soon as I came out of school to walk home, the heaviness lifted and I could speak again.

As a 4 year old, you can’t really explain what is happening when an adult asks you why you won’t talk at school.  You think how you feel is how everyone feels.  You think what happens to you is normal, even if it isn’t.  At that age you don’t know any different.  People thought I might be deaf, I might be autistic, I might have a learning disability.  They did all the tests and none of those things were found.  Consequently they decided it was a behavioural issue that needed correcting.

Teachers did not know what to do.  They encouraged me, disciplined me, got frustrated with me, asked me why I behaved that way and got no answer from me.  They sent me to the educational psychologist and the behavioural-emotional unit and they didn’t know what was wrong either.  Back then, SM was not an official diagnosis so they had no checklist to match my symptoms with.  I was trapped in isolation, and I didn’t know how to get out of the trap.  It felt beyond my power to escape from.

Teachers would try and encourage my peers to include me, and in the end they resented it because they couldn’t get a response from me.  As a result, I spent lots of time clock-watching in empty rooms whilst others went off to chat with friends. People gave up inviting me places because I would just stand silent and make them feel awkward.  I was watching the world around me as an outsider.

I was still stuck when it was time to leave school at 16.  I had seen my peers develop, grow, make friends, have fun all around me, but I hadn’t passed “go”.  I had spent my school life going to school, not communicating, and going back home at the end of the day not having engaged or spoken with anyone.  I was very delayed in my social and emotional development compared to others of similar age.  As I was approaching adulthood, my chances of getting a job and having a normal life hung in the balance, and I was also becoming very depressed because I was fully aware of my inability to function in the adult world.

It was a Christian family who helped me on my way to recovery.  They felt it was right to have me come and live with them when I had just turned 19.  I had very little communication; I mainly used shoulder shrugs and gestures, body language and facial expressions although I did speak the odd word.  Things like saying hello, goodbye, please and thank you were incredibly difficult.  Their response to this was unlike any I had experienced, in that they sent me constant messages that I was loved and accepted unconditionally, and they didn’t feel awkward around my silence.  After a couple of weeks the heaviness and paralysis began to lift.  This was due to them reducing the pressure to speak and I felt safe around them.

One day, I managed to say my first sentence to them – “I want to be able to talk and be normal”.  It was a desperate plea that I had wanted to make known for all those years, and I had managed to verbalise it for the very first time. This was just the beginning of a long road where they were to support me, nurture me and teach me to interact, and learn all the skills I had missed out on learning whilst growing up.  Eventually they unofficially “adopted” me as part of their family.  They supported me through many anxiety issues which arose as a result of my past isolation, including anxieties so severe I couldn’t visit my own family or be left alone without supervision.  They are still my family now and we are as close as ever.

Fast forward a few years, and I was also diagnosed with OCD (obsessive compulsive disorder) as well as having C-PTSD (Complex Post Traumatic Stress Disorder).  This is something I am still navigating my way through, and I write about in this blog.

It has taken me a lot longer than others, but gradually I got to the place where I can live independently, and I have come further than I ever expected.  I am now married, and have a job where I have met very lovely and supportive colleagues who have helped me more than they will know. Anxiety is still part of my life, and a battle I will possibly always face, but I now have friends and family behind me, and most important of all I have found my voice.  It is a great feeling to have friends and colleagues who I feel part of and included.  I feel they genuinely want me around and don’t feel awkward around me.  No more hours of isolation in empty rooms, no more clock-watching and people-watching; now I no longer feel isolated when I come home, because people are just a phone call away – all because I can talk.

Listening to music and no meds!

Listening to music and no meds!

A very unusual thing to be excited and happy about, but I’ll explain.  I am literally bursting with gratitude and amazement at how far I’ve come this year mental health wise.  For a couple of years I’d felt like I was battling like never before, and it was only getting worse. I was getting terrifying thoughts and I couldn’t switch off from them. Just hanging in there was how I’d describe it.

I was referred to the mental health team again, for a full assessment.  I learned that although I had been diagnosed with general anxiety, there were some major aspects that had been overlooked in terms me having the proper diagnosis and recovery plan.  What I actually had was OCD (obsessive compulsive disorder).  OCD tends to focus on the things that are most important to the person, and mine was focussing on my faith – a particular subtype of OCD called “scrupulosity”.

People with religious/scrupulosity OCD have anxiety related to their religion, sinning, and guilt, which can cause religious practices and rituals to become compulsive. Their intrusive thoughts can involve intrusive religious blasphemous thoughts or unwarranted concern about committing a sin.

People might avoid religious practice or reminders of religion for fear of being triggered, constantly seek reassurance with religious texts, spiritual advisers, family members, etc. or perform mental rituals, including analysis and mental checking for evidence of sin or blasphemy. They may feel compelled to confess every small sin to a religious leader to be sure that they have not accidentally omitted a cardinal sin to prevent damnation.  As a result they will often avoid their place of worship and all religious practice out of fear of their thoughts.

I could no longer listen to Christian music because it would trigger me and I would panic if I heard any lyrics that would start me needing to check I hadn’t done something that would make something bad happen.  If I knew that the sermon on a Sunday was going to be about a particular subject, I would either stay home that week, or go and stand outside until that part was over, in case I heard something that would trigger weeks of obsessions and compulsions.

At last, knowing what it was and knowing it was treatable meant I’ve had something to work with.  With medication and research I was able to learn how to manage the thoughts and not carry out the compulsions.  Part of the treatment is that you stop avoiding things that you think will trigger the thoughts.  I decided whatever was said in church, I wasn’t going to stay at home and I wasn’t going to stand outside.  I was going to stay in and tell myself it’s just an OCD thought and not to give meaning to it.  I also decided I was going to start reading the Bible little by little – just the “safe” scriptures.  After a while, I began to challenge myself because only reading the safe bits wouldn’t help me to face parts I really needed to face reading.  The key to overcoming OCD is to take something a step further that what it’s trying to stop you doing.

I came off my meds recently because the side effects were not very nice.

This evening I just realised I had been sitting listening to worship music for an hour and not getting bad thoughts, something I wouldn’t have been able to do before.  Then I had the sudden realisation that I have done about three Bible readings in church these past few months, a year ago I would have been afraid to even be in the service, let alone read scripture that I couldn’t make sure was “safe” before I agreed to do it. And….. no meds!

I am sitting here feeling blessed beyond belief, because never in a million years did I think I would be this free.

It has always been my aim when I could stay well enough for long enough, to pay it forward and volunteer for an anxiety charity or mental health/abuse helpline so I can be there for people in distress.  I am ready now, more stable for longer than I’ve ever been.

“Fun” OCD Soap & Candles

“Fun” OCD Soap & Candles

A follow on from my blog, “Fun” OCD T-Shirts.Image result for ocd soap

“We get you. We really do. That’s why we know you need loads of soap around your place. Everyone knows you can’t get all the germs off with just 25 simple hand washings. We both applaud and encourage your hygiene and discipline, and are the first to admit that we routinely triple-check to see if the fridge, stove, locks, lights and hand-grenades are all in working order. Stands up to repeated hand washings…”

 

 

hand sani ocd.png

OCD suffers describe words as 'disgraceful'

“If you’re not sanitizing, you’re getting infected. Open cap, sanitize, close cap. Open cap, sanitize, close cap. Make sure cap is firmly closed.  Recheck cap.  Are you sure it’s closed?  Repeat. Repeat. Repeat.”.. “Clean your filthy hands before we all get sick.”  “You can never wash those hands too many times when perfecting the world. Great little gift for those crazies out there.”

Things I want you to know

Things I want you to know

I often read articles on social media saying, “Things people with [insert name of illness] want you to know.”  They are ok, but some of the facts are very generalised, so many don’t apply to my experience, even if they are about the same illness.  So I decided to write a list of the things I most often wish people knew about me.

  1. The struggle is real even though I look and act fine
  2. People think because they can’t see it on the outside, and I manage quite a high functioning job there isn’t anything wrong with me
  3. I get terrifying thoughts, like torturous panic thoughts daily.  They can be triggered by anything, a random conversation, something on TV, something I see, something I read
  4. My thoughts feel so true they are incredibly difficult not to believe
  5. The thoughts come at the speed of a quick fire round in a quiz.  I can’t process them and rationalise them quick enough so they make me feel really shaken up
  6. Sometimes my lack of ability to process the thoughts quick enough means I can’t get the words out to explain to someone because my brain has “blue screened”
  7. The shaken up feeling and fast thoughts make it very difficult to motivate myself to get up, get ready, do my work, cook dinner, go out etc because I am doing everything through the thoughts
  8. When I make myself go out and do things, I’m always glad I did and it’s good for me
  9. Although I am learning to recognise an “OCD” thought so I can dismiss one if it comes, there is nothing to replace the thought with, and I don’t know what’s true, so I feel like I’m in a mental “no man’s land” a lot of the time
  10. It’s scary when you can’t trust your own brain
  11. I sometimes feel really upset because I don’t want OCD
  12. It’s scary to wonder if you will always need support
  13. It’s difficult to try and take a day off or holiday because when I don’t have routine, it is extra difficult trying to keep my thoughts under control.  This means I never truly take a rest
  14. My medication makes me lose concentration, and can also make me feel queasy and excessively sleepy
  15. People are not exaggerating when they say OCD is a debilitating disorder
Abuse for speaking out

Abuse for speaking out

Since I wrote my blog post about “Fun” OCD T-Shirts, I have been reading some of the comments in the media directed towards a girl who recently asked Target to stop selling an “Obsessive Christmas Disorder” sweater.

“Omg…then don’t buy the damn shirt!!! I’m so sick of offended pansies!!! How about this…YOU offend me…so stay home in your offended little bubble and let the rest of us live our lives without catering to you butthurt idiots…nothing better to do with your time than to find something to cry about!!! At one time I was medicated for OCD and I know others who still are and are still working on ways to cope without medication …and NO…OCD is NOT funny to those who TRULY have it… but really who gives a flying crap about a damn shirt!!!! GROW UP!!!!”

“To the poor butt hurt whining twatwaffle, I have OCD and find the sweater hilarious! If you wish to be offended by something please go look in the mirror.
As soon as people stand up and start saying to hell with your PC BUllshit these whining little crybabies will go away. STOP FEEDING THESE WHINING CRYBABIES!”

“OMG, someone will always be “offended”, by the dumbest shit! “OCD-Obsessive Christmas Disorder”
I’m offended by your ugly ass hair choice, and your dumb as fuck name (Reign). You need to leave the store. Stay home. Shop on the internet.
Does she really understand “offended”. Ok, she doesn’t like it. That’s not “offended”. I’m “offended” by her lack of sense of humor. Go to your safe place, snowflake.”

“GET A LIFE!!!!! She’s more than OCD if she can’t understand the OBVIOUS seasonal humor!! Clearly, SOMEONE needed 15 minutes!!”

“God, those people who hate that sweater must be nutjobs and in need of mental help.”

This was the response I liked most.  My dad suffered terribly with it too, had frequent hospitalisations and tried to take his own life.  I have so much empathy for the person who wrote this.

“My father suffered terribly from OCD to the point he could no longer live in the constant state of severe anxiety anymore. He took his life last December. Do I think a sweater trivializing his illness is completely inappropriate? yes. I will not “get over it”. It takes, on avg 14 years for sufferers to get the proper diagnosis. Most, like you, don’t have a clue about what OCD really is. Things like this sweater that make light of it keep people from truly understanding this horrific disease. So yes, it IS worthwhile.”

I wish people were able to politely disagree with people who are offended rather than directing abuse at them.

“Fun” OCD T-Shirts

“Fun” OCD T-Shirts

Many people in the OCD community get annoyed and upset about OCD jokes on T-shirts and other merchandise.  I totally agree that these portray a wrong and damaging stereotype.   The main effect this stereotype has on me is people associate the name of my disorder with something that isn’t serious at all. It is actually a very debilitating disorder, and a daily battle.  The World Health Organisation has actually ranked OCD in the top 10 most debilitating illnesses.   “Disorder” means it has a significant impact on daily living and relationships.   You can only be diagnosed with it if the obsessions and compulsions are causing significant distress or are taking up at least an hour or more of your day.

When I have pointed this out, I have often been told to “chill my beans” which has made me wonder if I shouldn’t be taking these jokes so seriously.

I realise people who use the term OCD in the wrong context are not necessarily doing it out of ignorance or ridicule. Over time, meanings of things mutate based on how society interprets and uses certain words or phrases.  So the issue we face is not that most others are necessarily being deliberately ignorant, but that OCD has changed its meaning.  Society now interprets it as being tidy, organised and a clean-freak simply because most people think that is what it means.

Having said that, I don’t think the ‘fun’ should be taken to an extreme that would shock people if it was about any other chronic illness or disability.

So these are the “fun” OCD T-Shirts I found online today:-

  • I find your lack of OCD disturbing
  • The first rule of OCD club is that we must have a second rule so there are an even number of rules
  • If you want something done right, get an OCD person to do it
  • If you’re OCD and you know it wash your hands
  • ME?  Obsessive Compulsive?  Whatever gave you THAT idea?
    • ME?  Obsessive Compulsive?  Whatever gave you THAT idea?
      • ME?  Obsessive Compulsive?  Whatever gave you THAT idea?
  • ” I’m not OCD I just know the correct way to do things”  A funny T-Shirt for people with OCD.
  • OCd turns me ON OFF ON OFF ON
  • “CAUTION – I have OCD and I’m not afraid to use it!”
  • “I do not have OCD.  This t-shirt proves i” A funny t-shirt proclaiming that you have been finally cured from your OC. See what we did there?
  • “If I didn’t have OCD I’d never get anything done” If you have mild Obsessive Compulsive Disorder, you get it.
  • “This t-Shirt can diagnose OCD” A clever t-shirt with a small design quirk. Your OCD friends will surely have their eyes twitching the moment they set eyes on this funny t-shirt.
  • I Have OCD and ADD so Everything Has To Be Perfect, but Not For Very Long
  • “They talk about OCD like it’s a bad thing.” Don’t we all have a little OCD? Is that bad??
  • “I have OCD – Obsessive Chicken Disorder.”   Amusing OCD poultry t-shirt & chicken gifts with a funny chicken theme. Looking for a hilarious chicken t shirt or poultry gift then this design is for you.
  • Do you have or know someone with obsessive compulsive tendencies? Are you a hand washer, or clean freak? Make light and have fun with it! ‘I’m not OCD I’m just a dedicated repetitive person’ A hilarious rephrase of obsessive compulsive disorder in colourful gradient letters! Nothing wrong with being dedicated at what you do! Great gift idea!
  • We’re not obsessed… WE”RE OCD!!
  • I have OCD – Obsessive Christmas Disorder, Obsessive Coffee Disorder, Obsessive Cat Disorder…etc.
  • OCD (with the letters crooked)
  • It’s an OCD thing
  • Happiness is when my ADD turns into my OCD
  • “I have CDO. It’s like OCD, but in alphabetical order, like it should be”. Funny Obsessive compulsive disorder humour saying / quote.
  • I don’t have OCD, I don’t have OCD, I don’t have OCD, I don’t have OCD, I don’t have OCD” Part of the madness of OCD is endless counting (usually in patterns or multiples). Also we love to deny we even HAVE it, which makes “I Don’t Have OCD” …five times, irony at its finest.
  • I (Don’t) Have OCD , I just like my things a certain way.
  • I have raging OCD, but thanks to laziness it all balances out.
  • OCD intolerant

Here are some of the comments when others have pointed out they feel upset by the T-shirts:-

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I would love to read your thoughts and views on this subject  x

Are You Trivializing OCD?

Are You Trivializing OCD?

This echoes everything I have been writing about lately. I’m so glad this lady has summed it up so well 🙂

Battling the OCD Demon

It was an interesting conversation to compare experiences with a fellow peer support specialist who worked in a different agency than my own, until it took a crippling turn. In answering the question of why I got into peer work with my lived experience with Obsessive-Compulsive disorder, the response I received was a chuckle and, ‘well, we deal with people who have way more serious problems than just OCD’.

My frontal lobe began to throb as the OCD monster living in the back of my brain took the opportunity to pounce. The rumination on whether my illness was as severe as I experienced it, if I was just weak and stupid, and the idea that maybe I just wasn’t as sick as other people completely took over. I stood staring at this gentleman unable to even respond. He sensed the awkwardness and change in the environment and quickly excused himself…

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