The Devastating Consequences of Untreated Selective Mutism

TRIGGER WARNING: This blog contains content that may be upsetting to some people. 

 

Throughout my blogs, I have mentioned multiple times that I have 7 different anxiety disorders as a result of my untreated Selective Mutism. Whereas I am not ready to talk about every single one of them just yet, there is one that although it is extremely difficult to talk about that I feel is very important for me to discuss. It is one of the devastating consequences that can happen if Selective Mutism is left untreated for many years.

Selective Mutism can make you feel very disconnected from the rest of the world. Since it often makes you unable to communicate with anyone in any way whatsoever, it can completely cut you off and isolate you from the rest of the world. As a result you will find yourself often going off into your own little world instead of connecting with those around you. If Selective Mutism is left untreated for many years, this can put you at a serious risk of developing Depersonalisation Disorder (DPD.)

I can honestly say that besides Selective Mutism, Depersonalisation Disorder is the worst anxiety disorder I have ever experienced. I have tried to explain this to many different people and I find that many people find it very difficult to understand. I am going to try my best to explain this in the hope that you will understand as it is a very complex thing to try and explain.

DPD makes you feel extremely disconnected from the entire world and even yourself. There are two parts to DPD; Depersonalisation and Derealisation. Depersonalisation makes you feel extremely disconnected from yourself and can often make you feel like you’re not real. Derealisation makes you feel extremely disconnected from your surroundings and can often make you feel like they’re not real. DPD develops as a result of your brain reaching the maximum amount of anxiety that it can cope with; it happens because your brain is trying to protect you but often this can just make things even scarier.

If for example you are in an accident or if you find out that someone you know has passed away, you will know that to start with you will not believe what has just happened has actually happened. This is because your brain goes into protection mode to deal with the anxiety/shock. This is normal for this to happen and in these cases depersonalisation/derealisation is quite welcome as it helps you to deal with situations such as these. Once you’ve gotten over the shock and managed to get through what’s happened these feelings of disconnection usually go away. However, sometimes after experiencing trauma or dealing with extreme anxiety disorders, these feelings of disconnection don’t just go away and in fact they can persist for years and years.

For me, Depersonalisation Disorder is very scary. I literally feel disconnected from the entire world and often feel like I’m not where I actually am. I will be completely aware of my surroundings; I will be able to see absolutely everything that’s going on around me, but I will have a genuine feeling that I’m not really there. I suppose I could say I often feel like I’m outside of my body, because whereas I can see everything that’s going on, I don’t feel like it’s right in front of me; it feels like I’m watching everything that’s happening on a TV screen. Often everything will look slightly darker than it usually is during these times, as if the whole word has a dimmer switch and it’s been dimmed slightly, even if it’s a bright sunny day. Often things can even look smaller to me than what they really are. It often makes me feel as if nothing that is happening is actually happening and it often makes me genuinely believe I am dreaming when in reality I am actually awake.

There will often be times when I am talking and I will have total control over every word that I say, but I won’t feel like any of the words are coming out of my mouth. I will feel as if I am watching someone else say them, it’s as if I’m out of my body and listening to someone else. Other times, I can go to places such as going on holiday and heartbreakingly, I won’t feel as if I’m really there the entire time. DPD can suck the enjoyment out of everything you do. Imagine trying to watch the TV and imagine that that is real life. You wouldn’t feel all of the emotions that you would feel just watching the TV that you would if you were really there and this is what DPD does. If you don’t believe you’re really where you are because your mind has disconnected itself from the real world, you won’t get any enjoyment out of doing whatever you’re doing.

Reading is a nightmare when you have DPD. DPD has a tendency to make me zone out quite a lot and this means I have not been able to read a book for a very long time. I can start reading an article and get halfway through and realise I’ve not taken absolutely anything in that I’ve read. I then have to read it over and over again multiple times before it finally goes in. The same can happen with conversations in real life which is even worse. There are only so many times you can ask someone to repeat themselves before they’ll get fed up and won’t bother to repeat themselves again. Often this can lead to me pretending I know what they’ve just said when really I had zoned out for the entire time that they were talking. The same even happens when I chat to people online. I can zone out whilst reading their messages and it can often take such a long time to get back to them. This often leads me to not be the first to message a lot of the people that I message because I then know that I’m going to have to deal with that.

Although I am nowhere near as Agoraphobic as I used to be, DPD can make me want to avoid leaving the house like the plague. If I go out, the DPD intensifies itself a million times over. I would say that the majority of the time, the DPD is present, but it’s nowhere near as bad whilst I’m at home as it is if I go out. The more people that are around me, the worse it tends to get. It can become so exhausting to be around people even though underneath all the anxiety I enjoy surrounding myself with people that I often find myself spending the whole time wanting to leave just so that I can go home and get somewhat of a relief from it all.

I have tried so many things to try and get rid of this. Therapy hasn’t worked; I am just told that it will pass overtime. It hasn’t and I can’t even remember when it started it’s been so long now. It gives me a sense of déjà vu because this is what I was always told about my Selective Mutism and of course that never passed, it just got worse. I’ve even been to the doctors multiple times and had blood tests and found that my Vitamin B12 and Iron levels were extremely low. A Vitamin B12 deficiency can have a severe impact on the way that you think, but since having all of that restored to healthy levels I have still not noticed any difference whatsoever. I had hoped that it was the cause so that I would start to feel better once my levels went up, but unfortunately this didn’t turn out to be the case.

Depersonalisation Disorder can be caused by the use of recreational drugs such as marijuana, especially if you already have pre-existing anxiety disorders/other mental health problems. If this is the case, it is recommended to avoid the use of any kind of recreational drugs as this can trigger your mental health to become worse along with developing other very unpleasant mental health problems. When I bring DPD up during therapy, I am often asked if I have ever used any drugs and I would like to point out that I have never used any kind of drugs; my DPD has been caused purely by extreme levels of anxiety.

Shortly after finding out that I had Depersonalisation Disorder around a year ago after struggling with it for years, I began asking others with SM if they had experienced anything like this and it was shocking just how many people said yes. I am honestly not surprised that this is the case because since DPD can be brought on by severe anxiety/trauma, it is highly likely that anyone with SM could develop this. Not only does Selective Mutism cause extreme levels of anxiety that most people would never even be able to imagine, the things that people with SM have to go through every single day can be extremely traumatic. It is not surprising that so many people with SM develop DPD because after going day in day out experiencing extreme levels of anxiety, it’s highly likely that the brain is going to reach the maximum amount of anxiety that it can cope with and lead to DPD developing.

Originally, I wasn’t going to write a blog post about this for the awareness month because not only did I think many people wouldn’t want to read it since it’s not actually about SM, but also because it is extremely difficult for me to talk about. However, after thinking about it more, in my opinion, helping others is much more important to me than holding onto my pride. I am not writing this because I want to worry anyone who has SM or any parents of children with SM. I am writing this because when it comes to raising awareness about SM, as I’ve said before, I do not want to sugar coat absolutely anything. I want to make people aware of the things that can happen if SM is left untreated for years. I want to make parents aware that they should never listen to anyone who says that their child will just grow out of it. I know that getting treatment for someone with SM is never something that’s easy, but I want to give you that extra push to fight and fight and fight to get the right treatment for your child. Your child is experiencing extreme levels of anxiety on a daily basis that is physically stopping them from being able to talk, which is heartbreaking in itself, but if that is left for years without any treatment, it can lead to so many other different mental health problems and then you’re left to deal with so much more than just the SM, just like I am. Overcoming SM can take years, especially when you’re older and the anxiety has become more deeply entrenched, but at least start taking steps in the right direction. Research as much as you can, and connect with as many other parents/older sufferers who either still have SM or who have overcome their SM. It is a case of starting to take those steps now and not waiting. The sooner you begin the treatment, the less likely it is for them to develop any other anxiety disorders on top of what they already have.

Please whatever you do, do not wait to start treating SM. Start treating it today, even if you don’t have any access to any professionals/any professionals that know how to treat it resources like the Selective Mutism Resource Manual are such valuable tools. If you start treating your child’s SM today, trust me, your child will thank you for it when they’re older.

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9 thoughts on “The Devastating Consequences of Untreated Selective Mutism

  1. Gracias por ser tan valiente y contar tu historia. Has sufrido mucho. Espero que al expresar tus sentimientos te ayuden para avanzar. Mi hijo con SM(7 años) está en tratamiento. Tengo una página de ayuda en español. Siempre leo tu blog. Te mando beso gigante desde Argentina.

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  2. It takes a great courage to share deep personal struggles like yours. I want to acknowledge you for being a huge contribution to this World,. I see your action changing lives of many people in the World. Our son, Lucas is one of those children that had struggled with SM for over 8yrs, left on his own untreated. Us, the parents didn’t know any better! He is now so deep into it, that sometimes I wonder if he feels that he exists; completely isolated in his World where playing on his computer in a dark corner of his room is the only form of function. Your article on DPD makes a total sense now. Do you have any advice from what worked for you to battle DPD to make steps towards overcoming it?

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    • Hi Ondrej,
      I understand exactly what you are going through. My son has had SM since kindergarten. He is now 17 and struggles daily with every day life. School is the most anxiety provoking place. He has a few close friends who understand his condition but he is often totally misunderstood by the school community. His teachers do not understand although I have constantly briefed them about this debilitating illness. He is judged by many and I know he is struggling. He rarely talks about his feelings. It breaks my heart to see him struggling like that. We have sought help a few years ago with psychologists to no avail. I worry about his future prospects, his employment chances, going for interviews and socialising generally. He avoids social functions, but will reluctantly go to family gatherings. He will not start conversations, only if he is asked a question, he will most times respond but not elaborate. I never force him into doing things he is not comfortable with. I encourage alot and always give praise for little steps along the way.

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      • Thank you for sharing, LPK. Were you able to get any therapy for your son?
        My wife and I have been taking the same approach for the past 8yrs, never forcing our son to do anything and just letting him be in his own comfort zone. Now we are getting feedback from SM professionals that we need to get him out of his comfort zone with small gradual steps. Does anyone have any feedback on this?

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  3. Hello again Ondrej,
    We did attempt therapy but it didn’t work as he would not talk to the therapist. In the end she said she couldn’t really help him and suggested medication. I did not want medication at the time because I needed to research this. I wasn’t sure what the side effects would be and was very uncomfortable with the option. I do agree with getting them out of their comfort zone to some degree. This is not an easy thing to do. Often a child will get so anxious about doing this and almost become ill. I encourage my son to order his meal on his own when we are at a restaurant with the family. He does it most times but talks very softly. Maybe start with very small steps like that. It is so difficult. How old is your son? Does he have an interest in sport? Our son plays soccer and that gets him out of the house. He doesn’t socialise with the team but he will acknowledge them, shake their hand and smile which again is a small step.

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    • LPK, I completely understand. It is very similar with our son. If we get him out of his comfort zone he gets physically ill. He would suffer the whole day without eating or going to a washroom.. We just started with medication and have not seen any improvements yet. I was against the medication for years, just like you but at this point I don’t see what choice do we have. I would love to stay in touch with you to share with each other the progress with your an our son. You can send me your email at obenjik@gmail.com.

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  4. Thank you for sharing one of your life struggles. It must be tough and emotionally draining at times…

    I’m 27 years old myself, struggling with a lot of issues that I’m pretty much sure have to do with my untreated selective mutism. I just found the words for what I had one year ago almost by accident..it explained a lot about my personality, difficulties, limitations,and so on…

    I have read so so much, but I have this never ending feeling that I should have found out sooner…way sooner u_u because of the consequences that I have to live with every single day…and at times I’ve felt life is utterly unfair…it is a huge burden emotionally

    I commend you for your courage!

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