Remembering that sudden feeling of emptiness and loss, and knowing that families are still experiencing this now is horrid. There is so much I know now that I wish I had known at that time to get me through those first few weeks. It wouldn’t have made it hurt less, but knowing someone else knew what it felt like may have made a massive difference.
Dear the mum that feels she has just lost everything.
I am here for you. You are not on your own now, and you will never be on your own. I understand that you may feel like the whole world is against you at the moment. That no one is listening to you, and no one understands you. I hear your tears as they fall down your cheeks and soak into your pillow, as you lay there wondering what the point is in every passing minute. All I am asking of you at the moment though is to just keep breathing.
If you can do that, you are already managing something truly amazing. You are already keeping yourself going and preparing yourself for the journey ahead. The one you have not started to think about. Or maybe you have. The one where you have your goal in sight, when what you lost is ready to come back to you. For you to feel complete again, to feel stronger than you ever have before. It is possible, just keep breathing ok.
I know that the thought of moving, or having anything to drink is just too much at the moment, but what strength could you muster up if you don’t do these things? If you lay there and think about this for just a couple of minutes while we breathe together.
Do you think you can carry on reading? Just for a little bit longer? There are some things that I want to share with you. The fight you have ahead of you is going to be hard, but you can do this. You have it in you, I believe that whole heartedly. Why? Because I never thought I could do it, then I realised that there was someone that believed in me. Having someone beside you every step of the way will give you guidance, strength and help you hold onto hope. Every step you take, and they won’t always be forwards, sometimes they are backwards, or they can even be to the side of that is what helps at the time, will be a step. That is what will be important. Even on the days like today, always take a step if you can, they will get easier. You don’t have to walk this path alone.
How do you feel now you have had a cry? Did it help? When you wipe those tears which keep falling, remember to never hide them. It’s ok to cry, they aren’t a sign of weakness, but everyone overflows sometimes with emotions. It really is better to let them fall and wipe them, than flood yourself with them instead. You don’t have to cry on your own.
Every moment you have from now on that fills you with a small amount of happiness, that makes you smile, that gives you hope (and these moments will happen). These are going to be what you will need to remember, to fuel the coming days or weeks. That hope, it’ll grow the more you feed it, the more light you shine on it. As you get stronger you won’t have to remind yourself as often. You aren’t alone.
Have you managed to continue with those breaths? If so, I’m so proud of you, if not, I’m proud of you for trying. It can be tough to regulate those lungs when upset can’t it.
Any ideas for what you’re going to do now? I’m grabbing some water, you want to grab one too? Great.
No matter what, one step, one minute, one day, you are strong and I believe in you. The world may feel like it’s crumbled, but maybe you’ve outgrown the world you had and are now creating a new one.
I have chosen to write about my own experience of this, for a couple of different reasons. To raise awareness of what it is, and how it can manifest in someone, to help those who either have symptoms and struggle to describe them or explain them find the words needed. Also, to help spread the word that having any form of mental illness, when it is managed, and when you are looking after yourself and recognising all of your own symptoms, red flags and aware of when you need to ask for help, there is nothing stopping you from being able to do what makes you happy. To work towards your dreams and reach your goals in life.
First of all, let me explain what dissociation is. The official definition of dissociation is the feeling of being disconnected from the world around you and also from yourself. (Thank you mind.org.uk). My explanation of it is quite simply, when you feel like you are living in time but not in reality. For that period of time nothing seems to fit, and nothing describes it accurately.
Everyone who has experienced this will have different experiences and will describe it very differently. This is my own personal experience, it is not to be used as medical advice, or in place of any form treatment. Please keep that in mind, me sharing my own experience is purely to raise awareness and share that at times, despite the fears, challenges, and hurdles it is possible to work through it all and see hope.
I first started to experience symptoms of dissociation 4 years ago. At the time I never knew what it was. I would get times when I would be doing something and this wave of ‘funny-ness’ would come over me. This feeling would leave me quite scared. I never really knew how to describe it. I would be doing the simplest of tasks, yet it was almost like I was on auto pilot, the room around me would almost feel like it had clouded over, and I was very suddenly alone. The task I was doing was all of a sudden going on at 100mph. Yet it wasn’t. The sounds around me seemed to be playing as if I had been submerged under water. It was so disorientating, yet I was unable to move my legs. I was fixated in that moment in time, just functioning. That was how it just carried on.
This went on more than once a day. Sometimes it would only last for a few minutes before I would almost ‘snap’ out of it. Other times it would ease enough for me to be able to move around, but that cloudy feeling in my head stayed. I wouldn’t notice if I walked into the edge of the door frame or stood on a toy as I walked across the room. Doing the simplest of tasks was exhausting and would feel like it took much longer than usual. To the others around me though, there was no difference. I looked fine and there was nothing visibly different about me. So, what was the big deal?
I thought for a long while I thought I was going mad, that is genuinely what it felt like. This kept happening though, only it was lasting longer and longer. There were times when my legs would turn to jelly and the only way I would be able to make this feeling stop was to sit on the floor. Taking long slow, deep breaths helped me. I still had no ide what was going on. I was glad that at the time this was only happening at home. It meant that I knew nothing bad could happen, and that if it ever did happen, I was always safe. I tried to not let it bother me for a long time.
Only then on day after about 8 months of having these at home I had the shock of my life, it began to happen elsewhere as well. In random places, walking down the road, in the supermarket, at work, while driving. It was at this point I was now getting really scared. I needed to know what was happening, was there something really wrong with me? Was I going crazy? Was I imagining this all happening to me?
I started some therapy and in giving an unbelievably bad description I was able to explain these little episodes, and how they made me feel. How they would happen, and how that when they did. I explained how I could walk around like I didn’t exist. Nothing could touch me or harm me. I was simply floating through the world like a ghost. Having the expectation that I would be laughed at when I said all this, I was surprised when I was told that there was a name for this. I was not expecting that at all, I was not imagining it, I was not going crazy, I was not really sick, and it was something that could be managed.
This was when I first heard the term dissociation. I was explained that it is the brains way of managing with stress. That I was basically detaching myself from reality for a period of time and although it is scary, it was going to be ok. To be able to hear those words was really reassuring, even though I had the fear there to know that I should be ok was good.
Over a period of time, I was taught some grounding techniques. So, if I started to experience those symptoms again, I would know how to try and stop them quicker. Sometimes they work, sometimes they don’t. I learnt a some breathing techniques which helped me focus my breathing, so instead of me looking around I would concentrate on counting the seconds I was breathing in for, then waiting, and then breathing out. Being the geek that I am, I loved the use of numbers and this gave me some focus. I also learnt the 5-4-3-2-1 technique. Name 5 things you can see, 4 things you can touch, 3 things you can hear, 2 things you can smell, and one thing you can taste. This was extremely useful when out and about. Especially if I was in the car, there was also now always the perfect excuse to have a packet of sweets or mints nearby.
I still experience dissociation today; it has never gone away completely. I get a good period of time where I don’t have any signs of it which is amazing. Then I will have weeks where I get day after day of that ghost feeling. I have learnt over time that it is my brains way of telling me to take a step back. There is too much going on for it to handle. To think more about my coping skills as something isn’t working. I look at my time more effectively and add in a little extra self-care, some reading, writing, a movie night, a long chat with a friend about absolute rubbish, or even just an early night.
I have, over time been able to learn the early signs of this for me. I now know what they mean and as a result I am able to carry on with practically all my every day things that I wish to. Not always, I make sure I remember to tell someone if the symptoms are too bad, sometimes I still have days when I feel like I can not handle them. On those days I get gentle reminders that I can, because I have done it before. Several times, I know what works for me. I know what to avoid. Keeping the symptoms secret, not sharing them, and hiding away doesn’t benefit anyone. By breaking down the stigma around this, we shatter the fear associated with it, we spread the understanding, and we make it easier for everyone to manage better.
If you have experience of dissociation, what have you found that has helped? What hasn’t helped? If you find that you have moments of these feelings where you just feel disconnected from the world, I would definitely urge you to get some support. As this is something that can be managed. It isn’t something that you have to just put up with. It isn’t something that you have to go through on your own. If you know someone who experiences dissociation talk to them if they want to. Ask what helps, no matter how long these episodes go on for they remain scary. Having that support and knowing what helps for definite makes them less scary. Mental health conditions shouldn’t be a reason to be isolated or lonely.
Listening to what our brains and bodies are telling us is one of the hardest lessons I have had to learn in order to take a step forward in caring for my own mental health. Understanding that it is not selfish, it is nothing to feel guilty for. It is in fact something to be proud of, and it keeps you functioning and running close to 100% as you can. Being aware of your own mental health is just as important as being aware of your physical health. Dissociation is one of those things that is not as well spoken about as other mental health conditions, yet it affects more people than we realise. I have dissociation, and I am not hiding from it any more.
I recently had the pleasure of meeting with Heather. We had an amazing conversation about her role as a counsellor. Heather is the first person I have spoken to who has a professional qualification and is running a page to help spread some hope and inspire others. As you will see we had some common interests and discovered a shared love of books! Heather has an amazing page full of useful information and can also direct you to her professional services if needed. All of her details are available over on her page Compassionate_counselling_uk on Instagram. Heather specialises in counselling which is person-centred, so it is focused all on you, and she goes on to explain more about this as we spoke. Hope you enjoy reading our little chat, and please feel free to pop on over to her page to check out the content she is sharing.
Hi, and welcome. I think I explained previously why I was writing these blogs; did you have any questions before hand?
No, I don’t think so, I’m just grateful for the opportunity:)
I am grateful that you have given me your time, so thank you.
I have a few questions which I would like to ask, but it’s really just a bit of a chat, to get to know you, how you came about starting your page, and what your hopes are for the future is that ok?
Yes of course.
So, I know from your about me post you are a person-centred counsellor. How did you come about going into this field? What was it that drew you to this?
Well, I have always struggled with anxiety and during school my mental health gradually got worse. I was bullied a lot and lost a few close family members suddenly so it all took its toll I suppose you could say. I was diagnosed with depression and panic disorder and I used to self-harm, so I have been through a lot over the years. I have also seen a fair few counsellors in that time, and I didn’t feel the right connection with them, and I didn’t feel supported to be perfectly honest. So, I wanted to go into counselling to help and support people who are struggling, because I have been there too, and I know how much of a difference feeling listened to and supported can make. I wanted to be there for people and give them a different experience than I had.
The focus is on the working relationship between client and counsellor in person centred counselling, this is one of the main reasons why I decided to train in this field. Being able to be there and work with the client to help them to help themselves is very rewarding.
I like that you were able to take your own experience, despite it not being the most positive and turn it round to promote your own strengths.
As a result, you are where you are today, and that is amazing.
Thank you, I just wanted to be able to be that support for other people.
How long have you been a counsellor for?
I did 7 years of training, which included both a psychology degree and 2 counselling diplomas. I qualified fully in 2019 but I have been a volunteer counsellor whilst I have been training for the past 3 years now. I decided to try to set up my own private practice earlier this year.
I also used to be a volunteer counsellor for ChildLine which I loved.
That is a long training programme, and a lot of commitment. It definitely shows your passion for the role.
Yes, I am deeply passionate about counselling and raising awareness of mental health.
What was it that made you decide to start up your Instagram page?
Well, I had been thinking about it for a while as I was thinking about starting up my own private practice. Since I had a lot of free time during lockdown (as lots of people did!) I decided, with some encouragement from my sister, to do it and set up my Instagram page.
I wanted to promote mental health awareness, show people that it is ok to not be ok and that there is hope out there. As well as promote my private practice.
Your sister sounds like a good support.
Yes, she is, I do have a lot of support around me.
Since you have had your page going, have your views, or practices changed in anyway?
My practice is constantly developing and growing I would say, rather than changing. It is important to keep learning and keep developing yourself as a person as well as a counsellor.
I have learnt a lot from other counsellors and mental health pages on here, there are so many!
Yes, there are, it is amazing how many pages there are with experiences, and knowledge here.
Have there been any standout moments for you in your career that you can share?
I have been fortunate to work with lots of different people who have had a wide range of mental health problems but mostly I have worked with people suffering from anxiety. I had a client previously who was a single parent and was suffering with anxiety due to a past abusive relationship. I worked with her for a good few months, but her progress was inspiring, she was inspiring!
Hearing success stories is soooo nice.
I will never forget working with her, she wanted the support, she wanted to change, and she did it for herself and her child and she “found herself again”.
That is amazing,
Yes, I was so grateful to be a part of her journey.
I was going to ask what is it that keeps you motivated, but I feel like that is probably your answer.
Yes, definitely my clients are my motivation. I just want to be able to continue to support people through counselling for as long as I can.
That’s a rather good motivation.
I think so too 🙂
If you have the motivation to keep going, and you enjoy it then that’s an amazing recipe for success.
So, with your work, keeping your page up to date and active, how do you keep yourself balanced? After all it is all important, and so is your own mental health. So, what do you do to keep yourself grounded?
Oh, good question! For me, yoga really helps to keep my mind clear and focused. It helps me to destress.
I also try to get outside when I can for walks in nature, it helps even more when the sun is out, but as we know in the UK that isn’t always the case 🙂
I am also a book lover! Reading helps my mental health a lot actually, I love the escapism they bring.
Getting outside is great when we can.
oohhhh what are you reading at the moment?
I have just finished reading a book called “The Golden Sea” which is book 2 of a series called The Mapmaking Magicians by Emma Sterner-Radley. I am currently reading “Inhibited” which is a complex fantasy by Cerynn McCain.
I am a very eclectic reader.
ooohhh I’ve not read those; I may need to do some research. (when i have finished my course) I love reading and writing so I read literally anything.
Me too, my bookshelves are jam packed with books I still need to read, but i am always buying more!
Same here, I have an e-reader, but it is not the same as an actual book.
Oh no I completely agree! Although I do read some books on my phone through apple books, nothing beats the real thing 🙂
lol definitely. Literally the sofa, blanket, book, I am sorted. My kids can leave me there for hours.
I just need to get them to read, I have one reader so far. I guess it’s better than none.
You can do it! It is just a question of finding the right book! 🙂
Yes, I agree
I have a final couple of questions for you if that ok, then I will let you get on with your day.
Unfortunately, they are not about books or reading.
That can be for our next conversation.
What a great idea!
What are your best hopes for your page and even your having your own practice? For the future
My hopes are to be able to reach more people who are in need of counselling and mental health support. I want to spread more awareness of mental health and the message that there is always hope. I would also like my page to keep growing and for people to enjoy my posts.
I would like to keep learning, growing, and developing myself and my practice as well.
I love that, it is hard to get the support, and the fact that you want to be able to provide that support and make it reachable is amazing.
Literally would like nothing more.
what key message would you want all the readers to hold on too?
That there is always hope and support out there, it is just about holding on and finding it. You are loved, you are cared about, you are not alone ❤️
I love that. Thank you.
I do not have any other questions for you.
you are freeeeeeeeeeeee.
Thank you so much for inviting me for this chat.
I think a book talk definitely needs to happen!
And yes, a book talk most definitely has to be arranged.
Thank you so much x.
So, a massive thank you to Heather for sharing some inside information on herself and showing us the importance of having some down time, and also that we all have a story. Our own story doesn’t have to define us, it can build us and give us strength to help others and develop us in ways that at times we not imagine. Watch out for some joint book reviews, as I have a feeling, they may be coming this way soon, now we have discovered a shared love of books, I can’t help but wonder what the vast array of genres spread across our bookshelves, I am very much looking forward to that conversation. Don’t forget Compassionate_counselling_uk is only on Instagram, you can click on the link anywhere in this post or from my page. Thank you for reading.
I know you are feeling scared at the moment, you’re facing something that is completely unknown to you. I wanted to let you know that being scared is perfectly fine, don’t be afraid to share this with those around you, you definitely won’t be alone. You will be able to manage this because you are an amazing person with a wealth of knowledge and if you can believe in yourself just a small amount compared to the amount you believe in those around you, you will be just brilliant.
I know that you feel guilty, like you could have done better. Or even prevented this from happening. You always say that things happen sometimes that are completely out of our control. Do you think this was one of those things? You couldn’t have prevented it really could you? That guilt is natural, but what if you converted that guilt into another emotion? How would that feel? Try remorse? Try saying to yourself “I’m really sad that happened but I couldn’t change it, so instead I’m going to do this.” Remorse will lead you to recovery easier than guilt, it will lean you towards steps to change, encourage you to move forward. Feeling guilty about an event will keep you in that moment, for a long time. Being sad that something outside of your control has happened is alright, it doesn’t make you a bad person, it makes you compassionate and caring. Qualities of an amazing individual.
I know you might be feeling lonely, like no one would truly understand the feelings and emotions that are going through your head. Those confused thoughts of anger but fear you have, of worry in case you say or do something wrong. The conflict between talking to seek advice and, talking and risk losing friends. Of being judged, labelled or excluded. The concern of having the reality check of having to re-prioritise some of the most important things in your life and not knowing if you have made the right decisions, never knowing if this is a risk that will be worthwhile. Please feel reassured that you aren’t alone, because whatever the time of day or night someone really is there for you, to listen to you, to hold your hand, to give you that much needed hug, supply you with a tea or coffee, and to just sit with you and listen to you. You really will never be alone.
That disappointed feeling you have, because you wanted to react in a different way that you felt was the right way. Those initial emotions and feelings that you allowed to surface, that you now regret. That you wish you never felt because you feel they were wrong. They weren’t wrong, they were all good, they were all the normal things that everyone feels and you managed everything so well. Your really should be proud of your skills. Look at how you took the next steps, how you looked at everything rationally, how you thought about everything slowly and calmly. Are these things to really feel disappointed about? I didn’t think so.
When all these feelings and emotions take over, overwhelm you, and are then mixed up with the addition of responsibility, love, respect for another, and experiences of others that you know it can create such a confusing atmosphere in your head. Sometimes it can seem more than a fog or a cloud. More like an electrical storm cloud, because unlike a normal cloud it’s not just blurry, it’s painful and can seem like the wrong turn will create a super charged ripple effect through the entire sky.
In order for a storm cloud to be so effective though it needs to have something to conduct the force behind it. By taking everything slowly, one step at a time, and having the realisation that you are the calm in that storm, you are in control of the direction of those lightening bolts, it will soon disperse. All storm clouds have one advantage that they don’t know about, they stop you seeing too far ahead. This means you can only ever focus on the step in front, so you see, that cloud is daft. It’s helping you to stay on track without even realising.
So, to my amazing butterfly who is reading this, I hope you can see the way through, because you really are beautiful and strong enough to face this. Remember to let that storm cloud help you, it will clear, but only if you can allow yourself you take it one step at a time.
On the 7th April I had the amazing pleasure of talking with Kate. Kate is the face and voice behind Creature_of_kindness on Instagram. We got talking about lots of different things, including managing our own mental health, while juggling studies and work. Kate has a passion for helping, and to spread kindness to all. As well as managing this page using her own experiences, she also has been studying law and working. I was so impressed at how Kate finds time for it all, plus finding time to have a chat with me, but she did and here is how it went.
First things first, when did you start your page? and how did you decide the name for it?
I started on the 13th of January this year. The name was probably the hardest part, especially to find something that’s not already in use. Creature of kindness just popped into my head and because my ethos being the page was really to spread a bit of kindness it just felt right.
I love the name, and that it feels right means it encourages motivation as well.
What was it that made you decide to start your page?
Honestly, it was quite spontaneous. I’d been thinking about doing something to keep me occupied during the third lockdown and it was actually my boyfriend that suggested making an Instagram page to share some of my experiences and lessons I’ve learned. After a few days of thinking about it I just decided to go for it. I guess it was kind of a gut feeling telling me to just go for it.
That is amazing. Your page has grown a lot since January, what is it that keeps you motivated?
The growth of the page has been so unexpected and I’m so grateful for all the support and positive feedback I’ve received for it. I have connected with some amazing people and pages on here and getting to know their stories has been incredible. I also find it quite therapeutic for me to share some of my experiences and thoughts and if it helps even one person or I can make someone smile then it makes it all worth it. Meeting with others and getting to know their stories has been a highlight for me as well, I have to admit.
Other than the sharing of experiences, what have you been pleased to see with your page? is there anything that stands out to you?
I love seeing so many people dedicated to ending the stigma around mental health and promoting a world where everyone is kinder to themselves and others. Especially during lockdown after what has been an incredibly tough year for everyone, it’s restored some of my faith in the world.
It is so nice to see, and you are playing a massive part in that as well with your input too.
Thank you, and likewise with your page!
Thank you. So, with the concept of your page being about promoting positive mental health, how do you manage on days which are difficult? we all have them after all,
I have found that deep breathing and grounding techniques work really well for me when I’m feeling particularly stressed or anxious. I’ve also been working hard on shifting my mindset and looking at things in a more realistic and helpful way, instead of listening to my anxious or negative thoughts. I also try and be proactive about my mental health and set myself up on the good days, so I’m better equipped to handle the bad ones.
That is really useful, and great that you have learnt what helps you. What are your best hopes for your page in the future? where would you like to see it going in the future?
Honestly when I started the page I never even imagined getting this far! I’d love to continue to make posts and build my page so that I can reach more people and spread some love and kindness. I’d love to collaborate more with other creators too.
That sounds like a great hope. collaborating with others is brilliant to help build stronger messages and spread awareness I find. how about you?
Yes definitely! Especially teaming up with someone who has a different experience or maybe knows more about a particular subject than me so we can share knowledge.
Definitely, sharing knowledge and experiences is so valuable. I was wondering, is your page your full-time role?
I’ve actually been doing it alongside university, but I finished uni last week so I’m going to have a bit more time to spend on it until I go back to work.
oh yes, I remember you said you were studying.
So, I’ve just finished studying law and my hope is to go into criminal law (a bit of a contrast from this page which may surprise people.
That sounds sooooooo interesting. Thank you so much for talking with me,
Lovely, thanks so much! I really appreciate you writing this about my page.
It has been so nice getting to know you, and more about your page. I am excited to write this up.
So Kate has a page full of inspiration, hope, and empowerment. You can take a look at her account here on Creature_of_kindness. You will find some self-care tips, along with some helpful words on mental wellbeing. I am so excited for the future of this page, and what posts are to come. I hope that you can all gain some strength from this page as I have done.
I was once asked the question “why do you apologise so much?” and I couldn’t answer it immediately. After a little while my response was simply “I’m sorry.”
It has taken me a long while to figure out how to write this blog, for a number of reasons. Some of which I will explain to you here. Some of which, I need to work on a little more before they can be spoken about. You will understand as you read on.
Why did I apologise after being asked that initial question? Well, the truth is I had no idea what else to say at the time. Saying sorry ended the conversation, it meant that I didn’t have to answer it anymore. It didn’t mean that I wouldn’t stop thinking about it though.
So, when I was recently asked a more specific question of “Women who have been victims of domestic abuse apologise so much, you used to do that too. Why is that?” I didn’t apologise (yay) but I wasn’t able to offer an answer. The response to this question I had, it was all in my head, but something was stopping me from speaking. However, I wanted to apologise (so so much) for not being able answer it, instead I managed to respond with; “I’ll write about it.” So that’s what I am doing.
I never really understood or recognised how often I apologised until I started to make an effort to stop. No one asked me to stop saying sorry, it did bug a few people, but no one ever made a big deal out of it. For me this was a good thing. I know not everyone is this lucky, and that can make it even harder to understand, because at the end of the day it is our natural instinct isn’t it, if someone is upset with us, we apologise. It is a vicious circle.
Let me start with why I am writing this, why was I the one being asked that question in the first place? One of the reasons of this is because (and admittedly for some of those reading this, it will be the first time they may see me ‘saying’ this) I can explain why victims of domestic abuse apologise an awful lot because I am one. I have lived that life, and those experiences. The feelings which boil up inside of you that can only be fixed by apologising can only be felt in those scary situations which not many people want to discuss.
What is it about the word sorry that provides someone like me with so much reassurance and safety? Well for starters it is just that. It is a safety word. In so many ways. The word sorry has provided a level of protection to me. In times of desperation, it has diffused arguments and ended conflict before it escalated. At the time I felt the need to apologise, it was my responsibility, and that there was no one else to blame. The only person who needed to say sorry was me, so I did. Before long I was apologising for everything. I was apologising to everyone. When I say everything and everyone, I mean it.
Stuck in traffic – I’m sorry. Even though there is nothing I can do about it, but I was sorry it was there. Going on a break at work – I’m sorry. Despite the fact that this is a requirement, a necessity and no one else had a problem with it, I was still apologising for going. Standing in front of someone else in a line – I’m sorry. It is a queue system, but I was still sorry that I was there first, and I would be served first despite the logic telling me otherwise.
I have many other examples which I am sure you have as well, these are just some of the simpler ones. It highlights the point though that after a while the need to apologise becomes so automated, that even when the logical part of your thinking is telling you there is no need for it, the emotional part of you takes over. It continues to tell you that you need to apologise, that you don’t deserve to have that break because it means other people have to cover you for the 30 minutes while you eat and pee. You are not entitled to be served first even if you did arrive earlier than others, and you caused that traffic because you didn’t really want to go to where you were heading anyway. This is what the abuse does to our brains, and it changes the way we think, the way we interpret our thoughts. Most of all it changes the way we feel.
You may be reading this and thinking ‘I don’t apologise that much’ but if you were to stop and think about it, and I mean really think hard, how often do you reckon you say the word sorry in a conversation? Or in a day? Before I wrote this, I had one conversation and it lasted 2 hours ok. I said sorry 8 times! That is an apology every 15 minutes! Apparently, I am not apologising as often as I used too, so I wonder how much I used to say it. I may quiz some of the people I speak with about this. Now this 8 times in 2 hours is 1.5 years after leaving the relationship I was in. I still hold onto my safety net now. I expect many others do as well.
When you have been made to feel like every wrongdoing in the world is your fault for any length of time, of course you are going to apologise. It is going to take time, sometimes before the word sorry comes out of my mouth I manage to ask myself what is it I am apologising for? That extra few seconds gives me the opportunity to decide is it in my control? Is it really something that I need to say sorry for? Did I cause that traffic jam? Did I make it rain on us on the school run? Do I really need to say, “sorry I am late”, or should I reword it to “thank you for waiting.” It isn’t always successful. It is a start, piece by piece my safety blanket will get smaller, and gradually that 8 times in 2 hours will become 6, then 4, then who knows.
Having a period of time when a different view on the world is forced upon you takes it toll. It can impact you in such a short space of time, yet the recovery from it can take much longer. That is ok, everyone is different, and their steps are different sizes and are taken at much different paces. If like me, you have learnt that saying sorry will give you time, and peace then that’s what you will remember. The trust needed to be able to retrain that thought has to be able to be built first, the feeling of stability and reliability to know that it is ok to not apologise.
Using the word sorry as a way of avoiding disappointment or criticism, then of course accepting praise, and compliments is going to be incredibly hard. Knowing that you don’t have to apologise before hand for ‘not being good enough’ when you really are much better than you realise will take time as well.
One of the hardest things to realise and understand to those that say sorry a lot, and those that hear it a lot from others is, do we really need to understand why it is that we apologise so much? No, not really because it isn’t going to change anything. We can’t stop it, there is no magic switch to turn off all those feelings and emotions. Do we need to be ‘fixed’? No, we are not broken, or damaged, so there is nothing there to fix. Have we recognised it within ourselves? Even if it’s just a small realisation then that is amazing.
We are all a work in progress.
The question we need to be asking ourselves is, how do we know we are progressing?
Decisions are hard, knowing where to start is the hardest of all. Choosing whether to allow to let fear lead you, or hope lead you is one of those things that you and no one else can choose. Sometimes the outside can be deceiving, and what may seem easy isn’t always the best.
What does it mean to allow fear to lead us? How different is it when hope steps in and takes the wheel for a while?
Hope needs a helping hand, needs quite a bit of motivation to get it going. They are like buddies and tend follow each other around.
Part of recovering from any form of trauma, life event, life blip, illness, whatever you wish to ‘label’ it, (we will touch on labels another time, that’s a whole other post in itself) is realising that you need to learn. I don’t claim to know everything, or indeed want to know it all. I am still learning how to find hope as well as you are, and I trip up sometimes. I don’t always have the motivation, and I need days where I stay in bed. I do however know the importance of not staying there, only from having done that, seen the consequences, and dealt with the aftermath of an incredibly frustrating amount input from A LOT of services that I didn’t really want or need. I learnt what I needed was to hold on to hope. Whereas before I was holding on to fear.
So, what’s the difference?
What are differences between the paths that hope, and fear can lead us down?
Following the path of fear is easy. It always seems to be the easy option in my experience. The simple choices, you know the ones I’m talking about. The ones which in the heat of the moment make sense but that little feeling inside of your gut tries to deter you. That feeling you ignore and push aside. The choices which you make in that moment seem so right, but the fall out is painful. The consequences catch up with you and that path which seemed so attractive to begin with, and so easy to travel down becomes an extremely dangerous one indeed. The phrase “living life on the edge” becomes more literal as each choice and decision becomes a risk, everything becomes a necessity to cancel out the consequence of the previous choice. The path of fear is no longer attractive, the beauty of it fades as it soon has you entrapped and feeling like there is no way out.
The path of hope, from the very beginning never looks attractive or welcoming. Why would a dark, lifeless, empty, lonely path be something anyone would want to walk down? This path as unwelcoming as it looks from the outside has its advantages. They are difficult to see unless you are brave enough to start walking along the very untrodden path. Finding the courage and energy to take those first steps can be really hard. So, what can you expect if you choose this option? Well for starters, you can expect a lot of ups and downs. You can expect that there won’t be any quick answers, that the journey you are about to take will be long, emotional, tiresome and at times stressful. It may also be lonely; does that mean it isn’t worth it? Not one little bit. The difficult road, with the unclear endings and answers that have to be hunted for will be the most rewarding journey. The obstacles you overcome to uncover those glimmers of hope, all of which piece together, creating this magical art piece for you to work towards.
Even if this path of hope has been the hardest one to travel along, and it’s left you with bumps, bruises, scratches, and knocks all over. You get to find the motivation to keep you going, to explore your journey, and decorate your path with your own identity along the way. There will be many opportunities to meet amazing and supportive people. To learn and discover who you are and uncover your strengths.
The choice of both paths is there for the taking, the decision is up to you. Both will be laden with challenges; the outcome though is dependent on which you choose. Fear or hope?
What path would you choose? I know there are times the easiest option is the most tempting, especially when feeling drained, emotionally exhausted and feeling the need for a quick solution. It is these times we all need to remember that it is ok to stop, breathe, take a few minutes and if needed ask for support, advice or just for some time. Hope can come in many shapes and forms, and sometimes disguised in plain sight. Not always along the most attractive path.
Sometimes we all need that little bit of hope. It can come in a the form of a letter. Here is one for you, a letter of hope for all those who have had a difficult few days. Take some time to sit, read, have a cup of your drink of choice, allow yourself to think and process the thoughts and feelings you have. You are doing better than you realise you are.
I know you’ve had a difficult few days, so how are you managing? Really, how are you managing with everything?
I wanted to write to you because then you will have something you can come back and look at again later, so you can remind yourself just how amazing you’re doing.
It is difficult when things don’t go to plan, I can’t imagine how you must be feeling right now. I am so pleased you’ve taken some time to stop though to read and focus on yourself. That’s so good of you, you are important too.
Have you been able to keep yourself well? Is there anything you can do to make it easier over the next few days? I think if you can come up with two things to help yourself it’ll be amazing, then you can focus more on everything else you need to do. It’s important you look after yourself, so any extra time is going to be so good for you.
How are you sleeping at the moment? Could it be better? What could help do you think? If you try something tonight to help you sleep better will it be worthwhile? Will you try?
With everything that’s been happening for you you’ve still managed time to read, that’s amazing, what other brilliant things have you been up to? I went for a walk in the sunshine and noticed the daffodils, they were so pretty, it reminded me of springtime and gave me some hope that brighter days are coming.
I know it’s hard, but you really are doing amazing, and I am so proud of you. You are being such a strong person at the moment as every day passes you are getting stronger. If you can’t see it right now you will one day.
Keep the hope that you will get through this because you are, one step at a time. One day at a time, and you will come out the other side. When you do, you’ll look back with such an amazing sense of pride.
This blog is written with permission from my daughter, we have written this together as our way of raising awareness of the journey in getting her diagnosis, to raise awareness of the challenges a teenage girl faces but also to break down some of the stigmas surrounding young people with autism.
She was 11 years old when I first noticed things were getting difficult for her. Friendships were getting harder to maintain, every day seemed to be another drama. At first, I didn’t think much of it, I put it down to typical pre-teen hormones and a moody group of girls who just couldn’t get on. Then came the complaints, headaches, belly aches, every day there was another reason not to get up in the morning and not to go to school. Before long these aches and pains became so frequent and interrupting I had no option but to think that there was more going on than a girl avoiding school.
Fast forward 12 months and we start secondary school, brilliant right! No. That new start we were holding on to, clinging on for a new set of friends in the hope that it would help her settle down and want to be in school at last. All those excitements as a mum wanting to watch her daughter start secondary school came crashing down within a matter of days. We were still having headaches, belly aches, backaches, everything aches. Only now we were also accompanied with anxiety, crying, and sulking every morning before school. That was on the days we could get school uniform on and get to the school. Now these weren’t any typical ‘sulks’ as you could put it. When these happened, they were in one way scary, in another way sad. As a mum it felt like I was torturing my child every day, the screams were ear piercing. Hearing her shouting out, and not saying I don’t want to go in, it was “I can’t go in” and that was the worst. This was accompanied daily with multiple episodes of kicking, hitting, sometimes biting. This could have gone on for hours depending on the length of time taken to try to get her into school. It really was a battle of the wills.
Now we were really lucky, we had an amazing paediatrician who was monitoring her headaches and had also involved CAMHS (Child Adolescent Mental Health Services), so we felt like to some extent we were being listened too. Not everyone is this lucky, and getting that initial referral is a long process. However, if you stick with it, keep going and never give up you will get there. Remember as a parent your voice is your child’s voice. I had to be the voice for my daughter and at times that voice had to fight hard. Those days when we sat across the table to senior people in school being told to just bring her in and ‘let her get used to it’ and that she was just ‘being a disruptive teenager’ that voice became more determined than ever. You see deep down I knew my daughter, and I could see in her eyes that there were words she wanted to speak but couldn’t get out. As frustrating as that was for me, I still to this day cannot imagine the frustration she must have felt in those meetings.
Through all the persistence and patience waiting for appointments and assessments I continued to be the ‘good mum’ that everyone wanted me to be. I fought day after day to get my girl into that school. To no avail I may add. I learnt very quickly just how stubborn she can be, how adamant she is when she sets her mind to something and how strong she is, mentally and physically. I can honestly say now, looking back that those strengths in her are going to set her up for an amazing leadership role in the future. At times I wish she hadn’t demonstrated them quite when she did but then she wouldn’t be the person she is today.
When we finally received that letter giving us a date for her ADOS (assessment for autism) I was petrified. There was part of me that initially felt like I had let my daughter down, like I was admitting defeat, yet there was part of me that was relieved we were being listened too and someone didn’t think she was just being a ‘troublesome teenager’ who didn’t like her new school. It was at this point I remember sitting with her and talking to her all about autism. We spoke about how skilful and artistic people are, how talented and hardworking autistic individuals are, but also how sometimes they can need some extra help with school, and with learning how to understand things like friendships. That we were going for this assessment not because anything was wrong, but because if she is autistic it would mean we could arrange the extra help and support for her as she needs it rather than leave her to struggle. That night despite the usual bedtime difficulties I found a letter written to me,
“Mum, I want to do this assessment thing, I want to know if my brain is wired differently”.
I knew she understood, I knew then despite my initial mixed feelings I was doing the right thing.
In the run up to assessment day, school became non-existent. The fights in the morning were not productive or kind to anyone. We attempted some schoolwork from home, I faced the letters threatening court action for nonattendance, the importance was placed on keeping the peace and maintaining a safe place for my girl. I tried everything, learning all the little things that she found comforting, small spaces, the vibrations of the tumble drier, in particular under the dining table with a blanket. Using these to keep her calm and not stressed worked most of the time, but the thought of attending school still caused a great deal of stress and upset to her. All those that loved her did all they could to keep her in a routine, it all helped. Not everyone was that accommodating, and we had to make it work, I became not just a mum but her voice, her advocate, her biggest fan.
On ADOS day I do not know who was more nervous. Well actually I do, it was me. The questions running through my head constantly were, what if she masks amazingly and no one sees what I see? What if it’s all in my head and she really is just being naughty? What if she panics in the room without me and they don’t know how to calm her down? What if she doesn’t talk at all? What if?????? My daughter however, walked straight into the room with the staff members from the assessment team without even saying bye, or looking over her shoulder at me and that was that. Turns out I had nothing to worry about at all. She came out all smiles, telling me she got to draw, and they asked lots of pointless questions. I couldn’t help but hug her and laugh. That was my girl after all, blunt, straight to the point and honest. We knew we would have to wait a while for the report, I knew it would feel like forever, as for my daughter. She just wanted to get some food.
In the weeks to follow while we waited, we had the big change of starting a new school. After a year of school refusal this was a very scary thing to do, but also exciting. A new start, a school with set routines, and the preparation to get her into there had been pretty good. A phased return followed some home learning, regular meetings with the staff to check in and just the language used when speaking with us made a massive impact. I can’t tell you the difference it makes when you get your child into school, even though they are late and you are greeted with,
“It’s good to see you, I’m so proud of you for making it in today”.
Three years on I’m glad to say she’s still in school, it’s not all rosy and sparkly. In all honesty some days are tough, but I am glad for where we are now. Compared to where we were with regards to attendance and schooling. There are no more mornings with kicking and screaming, which we are all happy about. The “I can’t go to school” is now very much “I don’t want to go in today, but I’m going anyway” which we have learnt is now a routine phrase and to be honest if I don’t hear it in the morning, I wonder what is on her mind. I am so used to hearing it now.
My daughter received her autism diagnosis in December 2018, she was just about to turn 13 years old. We were also told she has ADHD and Dyslexia.
When people meet my daughter it’s easy to understand why we went so long without a diagnosis. My daughter can mask brilliantly. This means she can mimic the behaviour of others around her, like a mirror. She doesn’t necessarily understand the behaviours however as she sees others doing things the assumption that it is the correct and appropriate way to behave is made, therefore she will do the same.
This will never change, I don’t want it to, at times it is quite funny, and as my daughter has got older and become more aware of her surroundings, social groups and their behaviours, she is more receptive to times when we can say to her “do you understand what that phrase means that you said?”
Sometimes the ability to mask can come at a cost, because on the outside it looks like she is able to manage everything, understand all the comings and goings of the world around her it is easy to miss the signs of a sensory overload. Especially in larger groups such as school, or outings, or friendship gatherings. It will only be when she is back home in her ‘safe space’ when that overload can be released. Normally resulting in total shutdown and essentially having a brain break.
When we are out and about I will with confidence tell others to give my daughter some time because she is autistic. We will be looked at with quite shocked looks, at times comments have been said as “really, she doesn’t look autistic” or “but she talks so well and gives such good eye contact”. Well yes she does, but that doesn’t mean she finds it easy, or comfortable. It doesn’t mean that before she walked into that building, or that room she doesn’t do a mental checklist, ‘look at them when they are talking to me, don’t interrupt, try and listen for more than 2 minutes, don’t swear, be nice’. (this is one example)
Now the beauty of autism is that no two individuals are the same. So, although I’ve written this about our journey to a diagnosis, and some of the challenges we have faced and either overcome, or adapted too, it doesn’t mean it is the same for every family out there. In fact, it won’t be the same for any other family at all. That is okay, your family’s journey is going to be unique to you, it is going to take its own path depending on what you and your child need, and what you ask for.
Our journey is not over, not by a long shot. To be honest this part of our journey is only just beginning, I am learning more about my daughter’s little quirks every day, the whole family are, and so is she. She is now beginning to learn to use her own voice which I couldn’t be prouder of, this means that I can now step back a little with some of the battles for support and requests for help for her, instead I am now her biggest cheerleader. My main role now is help, support, and encourage her as she grows to embrace her individuality, her talents, her skills, her quirkiness, her totally bonkers moments (which are hilarious by the way) and to help her love herself just the way she is, (not to mention embarrassing her at any opportunity possible). In return I have a daughter who shows empathy, consideration for others, emotion, a wicked sense of humour, and who is embracing her differences and utilising them to help others.
I couldn’t be prouder of how she has faced each hurdle or overcome each challenge. I wouldn’t change her for the world.
If you are battling with school refusal, I know how disheartening and disappointing it can be, the constant battles, and never-ending fights with local authorities and schools. You are your child’s biggest advocate, they will remember what you say more than the schools, always think what message would you want them to hear you putting across for them, what words do they need to hear you say?
Finally, despite the challenges of the day, the words that are passed between people, even if you have one of those ones (teens) that stay in their room. They will always hear you tell them you love them and remember it. (Advice from my teen)
Our journey has not been easy, it has not been the hardest. It has however been our own journey. We are beginning to own it, and by writing this together we would like to let others know that there is hope. There is a light at the end, and it is journey you can travel along with the support of the right people around you.
More specifically from my teen, “Autism isn’t anything to be ashamed about, it makes me who I am, and no two days are the same. Some days can even be quite funny, especially those days when I am super sensory and I cant tolerate anything touching me, and I jump all the time.”
I try to keep this website as real as possible. In order to do that it is important to understand that not every day is good. Not every day following weeks/months/years of mental torture is day full of smiles, and positivity. Sometimes it is more than a day. These slums can last days, sometimes a week or so. They are exhausting, but they are the reality of life. This is the life I have to live and manage on a daily basis, as hard as it is there are times when I want to say enough. There are days when I am great, and confident enough to shout from the rooftops. Although the slums are what many people struggle with. Over time there are ways to light the way out of them, they become easier to come out of, which is why now I can share this.
“I’m done fighting, fighting with everyone around me to be heard, fighting with the people who care because I want to be understood, fighting with myself because I don’t want to be the person I am. I have no strength left to fight these battles anymore, someone needs to hear me now.”
This is something I’m finding myself saying more and more these days. Despite using all the techniques and coping strategies I have been taught through the numerous therapy sessions I have attended I can’t understand why I am finding myself saying this.
“What do you need?” Is something that I get asked quite frequently and the only answer I can give is “I don’t actually think I know.” When the reality is, I do. I need time, and patience. Someone who is able to sit with me without a time restriction, who can just listen and help figure out the spaghetti junction of words, feelings and emotions that have tangled themselves up in my head. Someone who can just sit there and hold me while the tears fall and not feel uncomfortable, or the need to try and ‘fix’ them. Just to understand that they need to fall at that moment. The need to be held, comforted, and feel not completely alone at that moment, that despite the words ‘you are not alone’ being heard, for someone to understand that the feeling of loneliness outweighs those words on a daily basis.
The true facts are though, this isn’t a reality that can happen. I do actually understand that, despite the understanding being there doesn’t mean my head can accept it. Unfortunately for me my head still says, ‘I’m not ok, why can’t anyone see that?’ This then gets followed up with ‘why am I bothering if no one else is?’ Yet the truth is, I know people are bothered. I’d give anything for someone to truly understand what is going on in my head. So that then I might begin to understand it better. At the same time, I wouldn’t wish anyone to experience it, because it is scary and lonely. There is no happy medium here.
So why am I feeling like I have no fight anymore? Why are these feelings all coming flooding back like a tsunami when on the outside I am so close the end of one step of this journey? Fear? Is it the fear that it’ll all get taken away again? Maybe. Fear that I’ll be more alone? Maybe. Fear that if it goes wrong again this time it will be all on me? Maybe. Fear that I have been fighting all this time for the wrong reasons? Maybe. Fear of being forced to live this life when there’s still part of me that doesn’t want to? Maybe. Fear is a big part.
Exhaustion? Mentally exhausted from all the realisations of how much the last few years have damaged everyone. The exhaustion from trying to please every single person around me all the time. The exhaustion from trying to figure out who I am and the realisation that I still don’t understand, and will disappoint those I’ve learnt to care about? Not to mention the physical exhaustion of trying to create this person, to be the person I want to be, to do the right things, to push back the bad person I really am and develop this nice person I want people to see. The physical burnout from forcing myself to be at all the places I need to be and make sure I am mentally present despite knowing I need to take some time away.
When everyday becomes a constant battle, a constant fight, and then a constant reminder of a life that was, it becomes a constant nightmare that never ends. It chips away at the reflection and before long that’s all I am able to see in the mirror. A nightmare, that has nothing left, that knows what she needs but knows she needs to find an alternative before she gives in.
But when the cracks seem too wide, and it feels like the reflection is falling into them, quicker than any alternative can be found.
So, what do I do? What can be done to beat this, to close the cracks before it’s too late? To re-establish that level of control which will allow the functionality of everyday life. To allow myself to be able to turn that phrase around from “no fight” to “willing to fight” and stand up long enough to say it out loud.
Well first things first, I do what I do best. I write, write down the things that are going well. It isn’t always nothing, it is a case of stopping and thinking hard. Ultimately when I am writing I will eventually get to the point when I write “I am still here fighting.” See the hypocrisy there?
Every slum comes to an end, eventually. That I do know. Managing it, figuring it out, I haven’t quite solved yet. One day I might have a better understanding, in the meantime I rely on hope, virtual hugs from those that do care, my reliant on being able to write (even badly) and a cosy blanket.
Asking myself one question, “If you heard about someone else dealing with all you are, what do you imagine you would think of them?”
You see, the bad days do happen to everyone. They can creep up when we least expect it, or they can begin to build over a while. They happen because they are part of every single person’s life. No one on this planet has a good day every single day. There are parts that don’t go to plan, that don’t resolve the way you wanted. That change your future and turn your world upside down. The realisation comes when you learn how to refocus, grow, and learn from these changes. Hope is a powerful thing, and the hope that when these low days happen that you have the strength, motivation and will power to keep getting up and to keep moving forward. Even if it is at a slower pace than other days.