Stigma

Francis_theythem
Francis_theythem Online Community Member Posts: 120 Empowering
in Everyday life
I just had my PIP reassessment and I'm genuinely sick and tired of people thinking of ME as being tired all the time. I know that research, advocacy and research are probably the only ways to get round this but I actually despise the stigma we have to put up with.
I'm very low functioning but I honestly just want ME to be taken seriously for what it is and respected. I'm a philosophy undergraduate but maybe I should go and do ME research based on phenomenology (the study of experience in philosophy). But I'm super low functioning and also anxiety at actually doing anything unique. What do you think?

Comments

  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,714 Championing
    edited November 2020
    Hi @Francis_theythem How did you feel it went overall?

    Yep, some conditions really are steeped in misconceptions that reduce them down to just one facet of their reality.  I personally think much more needs to be done about M.E. awareness as I know I'm guilty too for associating it largely with tiredness.  

    As for your idea of doing research, I'm here to cheerlead you all the way.  Most research projects are born of something personal and your study would help enhance understandings of M.E. and also could maybe probe why it is not taken serious at a political level.

    Would you be interested in doing an MA?  It's something to consider and as its a passion project you would no doubt enjoy it and stay interested.  Oooh ideas, ideas!!  :)
  • Francis_theythem
    Francis_theythem Online Community Member Posts: 120 Empowering
    Okay - he seemed very understanding. It just frustrated me. Then, I listened to my online lecture for this week and he briefly mentioned what we're doing next week, which is about the relationship of the body in psychiatric illness and the differences with ME, which is a PhD students work. But at the end of the lecture he literally said 'chronic fatigue' when her research, all her talks and publications is ME/CFS explicitly. He did mention that she looks at chronic fatigue and also started looking at fibromyalgia as well as ME when I flagged it up for him on friday though. So I don't know if I'm overreacting, but it made me upset when I heard him say chronic fatigue only. It's not even like he said chronic fatigue and ME.  
    He's been super good with stigma in this module. And in his lecture notes is still the phrase 'chronic fatigue/ME'. Even after I told him it's stigmatising he still hasn't changed it. I don't know if I'm misinterpreting but I feel really upset with him at the moment.
    Hmm I want to stay at my uni but the MA has compulsory taught modules that aren't my area. If I was going to, it'd have to be MA by research, which I'd do if I had the right support and confidence. At this moment I literally just want to debunk stigma around ME. I sort of know how to go about doing it, I just have an essay on hallucinations to do first >< Why can I only do one thing at a time
  • Oxonlady
    Oxonlady Scope Member Posts: 563 Pioneering
    Hi @Francis_theythem, I can understand your frustration with the "stigma" of ME.
    When I went to Guy's Hospital in London to see the rheumatologists there, I was told that there's no such thing as ME and that Fibromyalgia is "all in the mind". The most dangerous aspect of this is that they explicitly say that patients with Fibromyalgia should not have any investigations. Thank God that other doctors have not followed these instructions on my medical records. I've recently had scans at another hospital which showed damage in my tendons of the shoulders and elbows. I'm in a great deal of pain and it obviously is not just in my mind!
    There are other rheumatology departments all over London who agree with Guy's. So I don't think much progress has been made to help ME or Fibromyalgia patients... 
  • lisajane73
    lisajane73 Online Community Member Posts: 6 Listener
    Hi Francis_theythem said:
    I just had my PIP reassessment and I'm genuinely sick and tired of people thinking of ME as being tired all the time. I know that research, advocacy and research are probably the only ways to get round this but I actually despise the stigma we have to put up with.
    I'm very low functioning but I honestly just want ME to be taken seriously for what it is and respected. I'm a philosophy undergraduate but maybe I should go and do ME research based on phenomenology (the study of experience in philosophy). But I'm super low functioning and also anxiety at actually doing anything unique. What do you think?
    More importantly what do you think?  I think it is testament to you that with your health condition you are continuing to learn and go to Uni at all.  Just a suggestion,  do you have a pastoral team that you could discuss with?  I think lived in experience and sharing is absolutely essential to understand how health issues affect us as they affect us in different ways,  we are individuals after all.  You've planted a seed and there is nothing more powerful than pursuing something in life we are passionate about!  Go for it! ?

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