Undiagnosed & relationships with similar people

RacheleLeahSilvera
RacheleLeahSilvera Scope Member Posts: 77 Contributor
edited March 2022 in Rare, invisible, and undiagnosed conditions
I have always been undiagnosed and have never met anyone who is in the same or relatable situation to myself and is living with a mystery condition.
I am interested in getting to know new people who have unique and unknown conditions. 
Feel free to reach out.

Comments

  • klara_1137
    klara_1137 Online Community Member Posts: 2 Listener
    Hi! 
    I’ve been dealing with an undiagnosed illness for the past three years and haven’t met anyone in a similar situation either. My mental health has really been affected by the illness especially recently. I would love to create a safe space to share and listen to people who can relate. 
  • steve39
    steve39 Online Community Member Posts: 53 Contributor
    Hi it's nice to meet you all I'm free if you want a chat x
  • Tori_Scope
    Tori_Scope Scope Posts: 12,471 Championing
    I would love to create a safe space to share and listen to people who can relate. 
    I think this would be great @klara_1137 @steve39 :) 

    I hope that some other members with experience of this will find your posts soon! Would you both like to tell us a little more about your experiences, and how having an undiagnosed condition has affected you?

    Have you been able to access any support for your mental health @klara_1137? 
  • Danielle_2022
    Danielle_2022 Online Community Member Posts: 265 Empowering
    Hi all,
    Just wanted to let you know that another excellent source for community support is the #NEISvoid on Twitter. Always lots of discussion about invisible conditions, too. 

    Either way, you’re always welcome to chat here about your experiences. I have severe Ulcerative Colitis, which is invisible. Although our experiences are probably not at all similar, I’m more than happy to lend a listening ear. It would be great to know more about your stories :)
  • FayeJ940
    FayeJ940 Online Community Member Posts: 6 Listener
    Hi, I am new to Scope.  I have lived until 3 years ago with hidden Lupus SLE, Fibromyalgia, and Relative Polycythaemia.  I am almost 49 now.  I have lived alone, all my adult life.  I am also suspecting I am also on the Autism spectrum due to Dyslexia and Visual Stress (Mearnes Irlene) I could have it wrong,  I have done several Women's Autism tests and come pretty far up there, but I have been able to mask well until the past 3 years.  I am currently experiencing what it's like to go through work procedures.  This is why I joined.  I know i have skills, but it's getting the balance between work and social, love relationships.  I put all my time into work to keep a job.  I miss relationships and love to be honest. Its so good to finally find a place to talk about this.  I hope we can continue to share. 
  • SueHeath
    SueHeath Online Community Member Posts: 12,388 Championing
    Morning @FayeJ940 welcome to the group.
    There are some very friendly people on here and there is always someone around that can answer all our questions.
    Look forward to seeing you around.
  • FayeJ940
    FayeJ940 Online Community Member Posts: 6 Listener
    Hi All, Thank you for your comments and support.  I do find fatigue is a real challenge.  I also had a car accident before Christmas, not my fault, and that's affected my shoulders.  I also had an emergency op to remove a lump in January.  Due to my situation at work, it was not possible to take time off, for the op, due to being off sick for too long. and having to go back to work the very next day to work.   As it would have gone to half pay.  I am currently dealing with issues at work for other reasons and dealing with misogynistic practices that resulted in a senior staffer being fired. in which I had to report him.  The stress had affected my fibromyalgia and lupus.  So I am working on the long road back to health, but I have been encouraged to look at PIP, to assist me in being able to afford a few things that could help me.  So many friends are so kind and helpful, but my GP has referred me to the Fibro pain clinic.   It's the hidden disabilities, so I don't know if Am  I meant to ask my GP about PIP or if I just start the process myself?  How do I tell GP about the severe soreness and pain, throat, head, shoulders, knees, ankles etc?   Being dyslexic is hard to express myself in a way that gets understood.   Also, I have Counselling skills and a foundation degree, but I found that charities are not so great at supporting you if you have disabilities or need tech support.  So I had to finish that.  I wanted to look at a free course in understanding Autism, i feel i am on the spectrum as well, but it's too expensive to get an assessment?  It's all new to me, I managed to a point over the years, but it caught up with me now. 
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,536 Championing
    Hello @RacheleLeahSilvera how have you been since you last posted here?

    I hope you find the replies are helpful for you :)
  • klara_1137
    klara_1137 Online Community Member Posts: 2 Listener
    Hi Everyone, 
    I have been actively reading all the comments and questions you've been posting yet I found it so hard to message back or share my experience... I have been on a journey to find treatment, medication a diagnosis for over three years now but I don't usually want to bother people with my story. Recently my mental health has hit the lowest point and it's been hard to keep a straight face and push through. I hope that some of you can relate, for me dealing with a long term undiagnosed condition can be so so isolating and frustrating. I have tried reaching out to my GP, hospital, pain clinic, private therapists and several NHS therapy options but I either didn't qualify for help or simply got ignored.
    Do any of you struggle with poor mental health whilst looking for a diagnosis or treatment? 

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