Cerebral Palsy
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Mild CP - trying to understand my cp.

BeMeBeMe Member Posts: 5 Listener
edited February 22 in Cerebral Palsy
Hello everyone,

I have been told since I was a child that I have mild CP.  It's so mild that many people would not notice anything unless I told them and I really don't know or understand much about my diagnosis as it wasn't really talked about at home. I was just taken from one physio or doctors appointment to another. My physical difficulties include weakness down my left side (that's noticeable but I still have good use of my hand and leg) a turned in knee, stiff muscles, poor balance and nocturnal epilepsy.  Because my cp not noticeable to most people its not something that I usually declare in my work, mainly because if I'm honest I don't think I have the right to do so.

Recently I have begun to wonder whether my CP affects me more than I realise and that I should declare it at work.  The reason for this is that even though I am intelligent and well educated every time I get a role that matches my education level I struggle to keep up with the amount of information I need to process and tasks I need to do.  I also get very emotional in meetings (more than anyone else I've ever known and I work in mental health and so pretty sure it is not a mental health difficulty) and it clicked the other day that this may be due to tiredness and maybe slight issues with emotion regulation as well as needing slightly longer to process information and make decisions because of my cp. All of these things make others treat me as though I am under confident and need additional meetings or support which is not the case, it is usually a result of feeling tired and overwhelmed or misunderstood. 

I'm wondering whether anyone else can relate to this or whether I am looking for an excuse to not accept that maybe I'm not cut out for the jobs I choose to do. 

Replies

  • janer1967janer1967 Member Posts: 11,085 Disability Gamechanger
    Hi there and welcome 

    You might find our CP section useful I will also tag in our CP advisor @Richard_Scope
  • Richard_ScopeRichard_Scope Posts: 2,829

    Scope community team

    Hi @BeMe
    It is really great to meet you. And what you are describing is not rare it can be very much a part of CP. I don't like the term 'mild', it may be suitable to describe the physical effects of your condition but not the neurological. 
    Fatigue, emotional regulation and needing time to process information or abstract ideas are all a part of our condition. You should declare you CP you have every right to do so.

    Scope
    Specialist Information Officer - Cerebral Palsy

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  • Tori_ScopeTori_Scope Posts: 4,959

    Scope community team

    I just wanted to welcome you to the community as well @beme :) I hope that Richard's reply has been helpful. I look forward to seeing you around! 
    Online Community Coordinator, she/her

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  • BeMeBeMe Member Posts: 5 Listener
    Thank you for your replies @janer1967 @Richard_Scope and @Tori_Scope. Your answers have definitely helped. Do you know whether I would need evidence from my GP to ask for reasonable adjustments at work? I'm not under any consultants any more and happy to contact my GP if needed but I guess I'm a bit unsure about what I would need them to evidence because as I have said the effects of my cp are subtle but cause difficulty nonetheless. 
  • janer1967janer1967 Member Posts: 11,085 Disability Gamechanger
    Hi again 

    The best way to get advice on reasonable adjustments I'd to get referred to oh through your employer for a work based assessment 

    They can then recommend suitable adjustments.  They can also contact your gp with your permission for the gp input 
  • WestHam06WestHam06 Member, Scope Volunteer Posts: 1,354 Pioneering
    Hi @BeMe,
                       How are you? Welcome to the community and thank you for joining us. I can see people from our wonderful community have already answered some of your questions. I just wanted to say hi and I also have CP so if you ever have any questions, please do ask. Thank you.  
  • BeMeBeMe Member Posts: 5 Listener
    Thank you @WestHam06. It's good to be able to connect with people who understand. I'm at the beginning of my journey to own and accept my cp. I have spent my entire life feeling like I need to keep it hidden because as I mentioned in my first post the physical aspects of my condition aren't immediately obvious to others but I'm beginning to realise that doing so isn't helpful. 
  • WestHam06WestHam06 Member, Scope Volunteer Posts: 1,354 Pioneering
    Hi @BeMe
                       Thank you for sharing with us and for connecting because, as you say, sharing things with people who have more of an understanding can be very helpful. I am pleased you feel that you are at the beginning of your journey in starting to own and accept your CP, though I can empathise that it is really difficult to get to this point. I hope you find the journey helpful in supporting your overall feeling about yourself and I truly am sorry to read that you have felt the need to keep your CP hidden. In my experience, it's a hard journey with many ups and down's but one worth pursuing. For me, it helped me to become more accepting of my CP and to acknowledge that it is a part of who I am and that is a good thing. I have developed a saying which is 'My disability is how I am not who I am'. Please, if you feel you would like too, share parts of your journey with us or please do ask any questions, we, as a community, are here to support you. Thank you. 
  • StayceStayce Member Posts: 414 Pioneering
    edited March 6
    Hi @BeMe

    I have Hemiplegia (right sided CP) and I too found it difficult to get to the point you are now, it’s tough but it does get easier honest

    There’s a great little tool called the My Hemicheck for people with Hemiplegic Cerebral Palsy to allow people with hemiplegia and their families to put together a simple personal summary of how hemiplegia affects them. So that  it is possible to give a printout, as needed, to people you interact with regularly e.g. employers etc. This might be a useful tool to look at for you to see how you could adapt it for your situation and support you in starting those initial conversations 

    The link to the My Hemicheck is here https://myhemicheck.hemihelp.org.uk/


  • BeMeBeMe Member Posts: 5 Listener
    It's nice to hear from you @Stayce and thank you for the link I'll definitely have a look. 
  • Newmember47Newmember47 Member Posts: 1 Listener
    Hello. Your post really struck a cord with me, as I have been going through a similar thing. Not acknowledging I am disabled, not seeking the support I need and not allowing myself to be who I am. 

    I was so discriminated against and bullied in school and by my family that I didn't go into higher education and haven't had a job in my life. Lost all the belief and confidence I had in myself as a child. Felt I couldn't work as well as a not-disabled person, so I didn't try. So you have already achieved a lot and should feel proud of yourself for that. So well done. 

    So you feeling tired or getting emotional means you work in a different way to other people and you need support to help you. Everybody needs support in some way and being disabled is no different. That's what I am learning to understand and accept myself at the moment. So its great you are seeking the support you deserve and starting to acknowledge who you are within yourself. 

    The more you accept who you are and that you are are person with CP, rather than a disabled person, so its part of who you are, but it doesn't define who you are. The easier it will be for you to emotionally relate and empathize with yourself and then explain that to other people who may be concerned for you and wanting to help you within your work or life. And you will build a good support structure around yourself to support you in achieving your ambitions in your life. 

    In my life I had issues because I am highly intelligent and aware of the world around, as well as my feminine self being more prominent than the masculine self. So all the world saw was a disabled male. And I struggling my entire life to feel safe enough to be who I am. My CP had no effect on myself emotionally or mentally, but I put all the blame onto my disability as that was the simple option for me and what everybody else in my life told me my problem was. So for intelligent, aware and articulate people with CP that is another challenge. Not being disabled enough can also be a challenge. 

    Thanks. Really appreciated your post. 
  • BeMeBeMe Member Posts: 5 Listener
    Hello @Newmember47 thank you for sharing your story.  Even though I have only been part of this online community for a short while I have already found advice and support that has been really helpful.  I hope that you to find the support you might be looking for.  I too was bullied through most of my time at secondary school so I I understand how easy it is to be affected by and believe what others say about you or project on to you.  I defined myself by that for years but as I've got older I am learning that it doesn't need to be that way.  I sought support to work things through and I'm still on the journey but getting there and accepting my CP is part of that journey. What I would say is that there is support out there to help and it is not too late no matter how old you are.  There are people on here who know much more than me about some of the difficulties you describe and can point you in the direction of support and advice if that's what you'd like. 
  • clarehb21clarehb21 Member Posts: 6 Listener
    Hi @BeMe
    I totally understand where you are coming from my cp wasnt really spoken about I just had bad legs and that was it I have what my GP calls mild CP and it wasn't until I turned 30 now 38 that I noticed it took me a lot longer for things to register than my colleagues and noticed I was really tired 90% of the time I have spastic desplegia I got in touch with my gp and told him this and they referred me to a specialist who deals with adults with cp and it was the best thing I ever did he explained everything about me he knew exactly how I was feeling before I even explained they have helped me understand my cp so much and what to expect moving forward I keep my employer informed of every step they are so supportive. So I would definitely inform your employer you are definitely going to need all the support you can get it was such a relief that I wasn't the only person going through how confused I was.

    Sorry for baffling on but didn't want you to feel you were alone 😊x
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