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    • #15639
      Bailey Vincent
      Keymaster

      Yesterday I wrote about pain medication and the stigma that’s often connected, but it made me wonder…

      What is the largest stigma you’ve faced as a patient before?

      Not all of us have faced mental misnomers from others, of course, but sometimes surprising things give pause as CF patients. For example, I sometimes worry about talking about anxious feelings or body dysmorphic undertones, because I don’t want my team to take me any less seriously when I have a physical complaint.

      What have you worried about sharing the most? Was it mental health- depression, anxiety, etc- or something else?

      I know this is a sensitive one, but hopefully we can create a safe space to honestly reflect together!

    • #15643
      Tim Blowfield
      Participant

      Certainly we have. Prior to Diagnosis of CF in 2009 my wife had multiple comorbidities over many years – bowel issues, respiratory then heart – during the 2000’s she was accused of Hypochondria and being a malingera by a number of Doctors. It was indicative that they did not understand her and even after we thought that CF was behind it all and asked them they dismissed it saying ‘Not possible you would be dead long ago’. (Most who accused her still do not acknowledge it but most are not now treating her. Cardiologists are some of the worst.)
      We still find Doctors do not consider how the faulty chloride channel affects the intracellular electrolytes not just the extracellular salt.

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