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That same old feeling

WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,027 Pioneering
edited December 2020 in Disabled people

Hi all,

         I hope that everyone is well. I would firstly like to thank you all for taking the time to read this and secondly to express that the following post is based on experience alone so apologies if anything that follows causes upset or offense, this is absolutely not the intention.

If I may, I would please like to share with you an element of a very difficult and personal journey, but one that I feel ready to share and one that I feel is important. I live with Cerebral Palsy and this causes physical challenges on a daily basis. However, I would argue, that some of the most difficult moments I have faced due to my Cerebral Palsy are not the physical ones but the mental and emotional ones. As many of us will experience throughout our lifetime, mental health is a really personal and delicate experience and one that needs to be handled with great care by all involved.

I would say my most difficult years were my teenage ones, both in terms of physical changes in relation to my condition and the impact that my disability had on my mental health. I would use the following sentence to describe how it was for me at this time. ‘I grew up disabled in an able-bodied world’.

I am quite a determined person and for many years I strived so hard to be like everyone else, like the people in the street, like the people in my school, like my friends, like my family. Everywhere I looked, no-one really looked-liked me, walked like me, spoke like me. When I moved to secondary school there were a few more people with similar conditions but not many, I still felt like I stuck out like a sore thumb. On I went, trying everything I could to just be like them, refusing to use my wheelchair when I needed to and then falling over in front of everyone, making me stand out even more. No matter how hard I tried, I just never had the moment where I could say ‘Yes, I’m just like you’. Now, what I had not realised by approaching life this way, was the emotional and mental impact this had on me.

At around the age of 14 years old, I started to experience more health issues, increased pain in my hips and so on and this caused me to have to rely on my wheelchair much more and accept the need for the use of aids such as a stick and eventually crutches. This was where I lost ‘me’ for a number of years. It would be 10 years later, where I woke up one morning, looked in the mirror and thought ‘It’s not the real me staring back’.

At 15 years old, I just felt so lost, that I was never quite good enough, that I was a failure, a burden, a let down and a disappointment. Everything I did just wasn’t quite enough because, to me, I was still disabled. I did all that I could to distance myself from my CP and yet, with each passing year, it was catching up with me. In my head, being disabled was something to be ashamed of and it was all my fault.

As I reached adulthood, I denied myself opportunities because I felt I didn’t deserve them and I felt I had to prove myself on every front just to try to put just a little bit right. I was sorry for everything, even, at one point, for my very existence.

The trouble with constantly being sorry, eventually your apologies run out because when we are sorry for something, generally it means, we recognise that something, whether it be a word or action, is unnecessary and causes pain for someone else. We do all we can to learn from this or to find a way to ease the pain of another but I could not do this because I would always be disabled. There also comes a point where burdening the blame for everything starts to really impact. It feels like a champagne bottle bubbling up ready to explode, especially when you tell no-one that you are feeling this way.

I had all these negative emotions buzzing around my head and my heart, guilt, apologies, anger, hurt, frustration, being a burden, being a let-down, not being good enough, being a failure. Even my chosen career choice was not compatible with me In all truth, they had been buzzing around for years and I just didn’t know what to do with them other than to suppress them. The problem was I told no-one and did all I could to hide it from those around me, though they knew I wasn’t myself.

It took me 10 years to ask for help and when I did it was the best thing I did. Please don’t get me wrong, it wasn’t easy and it took time but talking to someone who didn’t judge, who just allowed me to say those deep-rooted feelings which had been within me for all those years, was scary, thought-provoking, life-changing.

Now, when I face challenging times and feel myself closing up, I recognise this and take the appropriate action because I really don’t want to go back to feeling the way I did. Recently, I have been diagnosed with a second, long-term condition and I am not really sure how I feel about it. Some days I am able to acknowledge it as something that I have, other days I feel incredibly sad, particularly when I consider how it will impact my future. It once again raises, for me, the question of ‘Am I good enough’? However, I feel far more equipped to be able to deal with these emotions and recognise the importance of talking, when I feel I am ready too.

I know mental health is a very complex topic and each individual’s experience is different but I still feel there is misunderstanding as to what mental health actually is. When I was a teenager and experiencing these feelings, I was told that I was ‘emotionally cold’. I would disagree with this, even back then, I had emotions, both positive and negative ones, I just had trouble opening up and expressing them, something that is quite common among teenagers. It is about recognising when these emotions are having a bigger impact and how we can support people to open up in a safe environment. I was also told that I ‘shouldn’t feel sad’ because I was lucky ‘to have a loving family’ and that I should be ‘grateful for the support I received’. Please don’t get me wrong, I am all too aware of how fortunate I am, however these comments made me feel even worse about myself and shovelled the guilt on an already high pile.

As I reflect upon these experiences, I do feel sad, however, I also see them as learning opportunities. I am no expert, but try my best to be mindful of my wording when speaking with people about how they are feeling and also, to the best of my ability, not to judge because we don’t know the experiences of others. I do my best to just listen.

I really want to help raise awareness of the importance of talking and speaking to the appropriate professionals for help. I also want to shine a light on the fact that people with disabilities can face poor mental health.   I have made some changes to my life, which have been scary, but worthwhile and I look to the future much more positively. I am starting to recognise my disability is a part of who I am and something that should be celebrated, though I am not there yet, I feel I am heading in the right direction.

Thank you so much for taking the time to read this. I would also like to thank everyone here on the community for being so supportive.


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Replies

  • woodbinewoodbine Member Posts: 2,089 Disability Gamechanger
    @WestHam06 I felt honoured to read that and it must have been difficult to write some of it my friend, so well done you. Writing down our problems and feelings is never easy but I'm told it can help. Take care , stay safe and know that you are amongst friends.
  • Tori_ScopeTori_Scope Community Team Posts: 2,747 Disability Gamechanger
    A really insightful, well written, and powerful post @WestHam06. Thank you so much for sharing that with us. I think many people will learn a lot from your experience, and others will be able to relate in a way that'll make them feel a little less alone, as well as it being a (hopefully!) cathartic experience for you.

    As woodbine says, you're amongst friends here, and we're always here to listen :) 
    Online Community Coordinator, she/her

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  • Cher_ScopeCher_Scope Community Team Posts: 2,376 Disability Gamechanger
    edited December 2020
    @WestHam06 <3 These are such beautiful, heart-felt words about the most intimate private feelings.  Thank you for sharing them with us and I just know that they will help someone reading.  If you ever start a blog let us know :) 
    Online Community Co-ordinator

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  • PhilipAndersonPhilipAnderson Member Posts: 11 Connected
    @WestHam06 Thanks for sharing your challenging experiences. I am glad you now look to the future much more positively.

    Your comment that your disability is a part of who you are and something that should be celebrated, resonates strongly. Our disabilities are not the whole us, and should not define us. We are unique individuals, each with talents and aspirations, just as the able-bodied are

    I like to think of Scope, as a support refuelling station, populated by friends. It's great we can support each other like this. Take care of yourself
  • janer1967janer1967 Community champion Posts: 6,062 Disability Gamechanger
    Very powerful insightful post thanks for sharing this with us .
    I hope by writing this you have been brought some comfort and I am sure your attitude will help others . 
    As you know you are a very respected part of this community 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,027 Pioneering
    Hi @woodbine
                             Thank you so much for your kind and supportive words, I really do appreciate them. Writing things down does help, I started by writing poetry (not very good ones :) ) as it was the only way I could start to express how I was feeling. It was hard to write, thanks for acknowledging this it means a lot, but it feels like the right time and place to start sharing my experiences and I hope that by doing this I may be able to help someone who is in a similar position. Thank you also to everyone for making this a comfortable, friendly and safe place for me to start to do this. Thank you once again @woodbine.   
  • woodbinewoodbine Member Posts: 2,089 Disability Gamechanger
    @WestHam06 you are more than welcome
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,027 Pioneering
    Thank you so much @Tori_Scope, much appreciated. My hope is that by writing this it may help at least one person to feel a little less alone and to know that by talking about feelings and emotions it can be really helpful, though I do recognise and acknowledge this can be really difficult for some people. Thank you.
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,027 Pioneering
    Thank you so much @Cher_Scope, I really do appreciate the kind and encouraging words and for all of the support :) If it helps at least one person then it will mean a great deal to me and I hope that if there are people out there who are having a difficult time that they are able to receive the support they need, with kindness, warmth and understanding. Thank you. 
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,027 Pioneering
    Hi @PhilipAnderson
                                     How are you? Thank you for your kind and encouraging words. I completely agree with what you say, we are all unique individuals with something positive offer. Scope is an amazing support network and definitely gives the feeling of being amongst friends. I feel very privilege to be part of the community, thank you for having me. Thank you @PhilipAnderson
  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,027 Pioneering
    Hi @janer1967
                              Thank you so much for your kind and encouraging words, I really appreciate it. I hope that it will help others in a positive way and if it helps at least one person then it will mean a great deal and I am very fortunate to be at a stage of my journey where I am able to use my experience to hopefully help others in a similar position. I know I felt very lonely at one point and I wouldn't want others to feel like this, though I do acknowledge that sadly, it is a common feeling, for many different reasons. Thank you @janer1967
  • PhilipAndersonPhilipAnderson Member Posts: 11 Connected
    @WestHam06 It's a pleasure to share thoughts and experiences with you. 
  • Richard_ScopeRichard_Scope Community Team Posts: 2,483 Scope community team
    @WestHam06
    I want to say thank you for sharing your experiences and to commend your bravery in writing so honestly. I think that being at peace with oneself is a real challenge for us all. I can completely relate to most if not all of what you have written and what I can say is in my experience is that the older I get the more peace I find.
    Scope
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  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 1,027 Pioneering
    Hi @Richard_Scope
                                     Thank you so much for your supportive and encouraging words, I greatly appreciate them and for sharing your experiences with me. I take comfort in what you say about as you have become older the more peace you find, there is much reassurance in those words, thank you. I also agree that finding peace with ourselves is a challenge for everyone and is definitely a journey. Thank you
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