Is it just me? — Scope | Disability forum
Please read our updated community house rules and community guidelines.

Is it just me?

Tink2019
Tink2019 Community member Posts: 4 Listener
i have both physical and mental health issues. Because of this it seems like I’m going round in circles and everyone has decided I’m not their problem treatment wise so I’m stuck on my own pretty much in extreme pain. I have ESA and seems like because everything is invisible no one believes me?

so is it just me who deals with this mess. Because it feels like it. 

Comments

  • Paddie
    Paddie Community member Posts: 75 Courageous
    I too have an "invisible" illness. It's so difficult to explain to Drs' how bad I'm feeling & how much pain I'm in when they think I look well!!!!!
    I'm fortunate to have a good Rheumatologist, who knows, despite how I look, how dibilating my illness is.
    Im bedbound a lot & certainly house bound.
    The only "proof" of my illness is the Blood issues I have & that's the only thing to confirm  my illness.
    I absolutely hate when you go into see a GP & the first thing they say is "your looking well"!!!!
    How do you follow that remark...... I feel & totally understand your frustration.
    so no, your not alone in that department at all.....
  • thespiceman
    thespiceman Community member Posts: 6,388 Disability Gamechanger

    Hello @Tink2019 Pleased to meet you. Sorry to hear what you are going through.

    To give you some reassurance it is not you. You are not on your own with the problems and also issues you have.

    Having mental health issues with physical problems .

    I think if what is important is finding what is best for you.

    Suggestions would be what would you like to happen.?  Your own health issues. Do you think you need to find support or do you needs some answers with any treatment.?

    This is something I had to do.

    There is lots of information, advice, guidance and help . Out in there. In the health community.

    In my own situation getting pushed around was not for me. I have needs and want some help but it is the problem. If no one was listening or hearing me.

    Doors closing.

    Decided to think what do I want from any Health or Mental Health services.

    Make a plan. Have some goals, aims to think how to move forward.

    Small steps never too drastic things certain aspects you are comfortable with.

    Found a voice used Advocate services. NHS have them or use charities RETHINK.

    Is one.  Used them support mental health clientele with wanting and wishing to have a voice in any treatment or service.

    After coming off addiction left with nothing. On your own places, support became non-existent.

    Found through RETHINK and eventually the Doctor.

    Contact another charity. Just got fed up no where with Mental Health Council Services..

    I am in control I am responsible for my own health and needs. 

    This is sometimes the answers. 

    Find alternatives to helping your health issues and conditions. Do research .  The net is a wonderful thing. Be educated about your conditions and illness you have. Keep reference material and any thing else.

    Always learning. My own issues into diet, nutrition and wellbeing.  Lots of guidance, advice . 

    Therapies, coping methods and strategies.   

    Doctors and any other medical professionals may have expertise and knowledge. We expect them to know and heal aid recovery.

    Any questions you may need.  Use to write everything down if I could not access Advocate.  To the Doctors.  Give them the notes please can you look at this.

    Does help. 

    I used this charity last time .  Get floating support, wellbeing with health. Looking at benefits and anything else related.

    https://www.richmondfellowship.org.uk.

    I hope this helps you.

    I know subscribed to WHICH Magazine has lots of guidance, advice and booklets including how to deal with Medical professionals and the NHS.

    Also has reference material on lots of advice, guidance and information on a range of health issues, care and much more.

    Please if I can help be supportive.

    Happy to do so.

    Pleasure to meet you.

    Take care.

    @thespiceman



    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Adrian_Scope
    Adrian_Scope Posts: 10,821 Scope online community team
    I'm sorry you feel like you're alone in this @Tink2019, it must be very isolating. However, there are many people here who will be able to relate to feeling somewhat abandoned. I hope you can draw some support from them and if you need anything advice at all, please let us know. We're here to help as best we can.
    Community Manager
    Scope
  • Antonia_Alumni
    Antonia_Alumni Scope alumni Posts: 1,780 Pioneering
    Hi @Tink2019 I am sorry to hear this, how are you doing today? Please do let us know if you have any questions,

Brightness