FEAR AND CHRONIC ILLNESS HALLOWEEN EDITION MONICA MICHELLE AND KYROS STARR TALK ALL ABOUT THE THINGS THAT SCARE THEM. Monica Michelle has been having a tough time with Ehlers Danlos Syndrome and a new diagnosis of MCAS and Kyros is have joint problems and some new troubling symptoms. Disability has never been so spooky.

In all seriousness warning if you have problems hearing about depression and things that go along with depression.

Panel Discussion: FEAR


  1. Life before Invisible Illness

    1. Things you fear

      1. Losing your job - because you worry about paying your bills

      2. Growing old

      3. Getting in a car accident

  2. The First Fears - Something’s Wrong: Invisible Illness arrives

    1. Things you fear

      1. Losing your job - because you’ll lose your health insurance

      2. Changing jobs - will my new insurance consider my illness a pre-existing condition?

      3. What’s wrong with me? - pain or problem intermittent or minor so you’re unsure what’s wrong.

        1. The internet is a HORRIBLE place to look for what’s wrong with you. Self-diagnosis can lead you down many frightening paths!!

      4. Losing friends because you can’t participate in social events

      5. What if I never get better?

      6. Loss of self-control

      7. Dependency

      8. Worry about worst-case scenarios

      9. Doing things that could lead to more pain (going out with friends, etc)

      10. Missing out - all the things you want to do, but can’t anymore

  3. Doctors Don’t Have Any Answers

    1. Things you fear

      1. More fruitless tests

      2. Spending more money for said fruitless tests with no guarantee that you’ll actually learn anything

      3. Losing your home because of mounting medical bills

      4. Uncertainty

      5. Am I the only one?

      6. Afraid the doctor won’t believe me or will dismiss my illness

      7. Will this medication work / Will it continue to work

  4. Research, Research, Research

    1. Things you fear

      1. Desperation leads you to researching on the internet. You’ll convince yourself that you are dying in 10 different ways before lunch!

      2. Join chat rooms, facebook groups, reddit forums all so you can talk to people in the hopes of finding out something that can lead you to a diagnosis

  5. I Have A Diagnosis! Finally I know what’s wrong, now what?

    1. Things you fear

      1. What does this look like going forward?

      2. What are my new limitations?

      3. Is there a cure or just “bandaids”?

      4. Can I get something for this pain? - “The opioid epidemic”

      5. What are the side effects of the medicine I now have to take?

  6. What Do You Mean I Have Something Else Now? - Most people with an invisible illness have multiple problems, not just the one.

    1. Things you fear

      1. What is this new thing?

      2. Do I tell my doctor?

      3. Having to go through the whole process of figuring out what’s wrong with me now.

      4. Is this too much for one person to bear? Thoughts of suicide.

      5. Losing relationships because they can’t bear the ever increasing hardship of taking care of you

      6. Loneliness and isolation

      7. Fear of death



Article Links

  1. https://themighty.com/2017/09/chronic-illness-and-fear/

    1. https://themighty.com/2017/07/chronic-illness-fears/

    2. https://themighty.com/2017/05/emotional-side-effects-sick/

    3. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1070773/

    4. https://brainlessblogger.net/2017/12/10/6-fears-we-can-have-with-chronic-illness/

    5. http://www.alpineguild.com/COPING%20WITH%20CHRONIC%20ILLNESS.html

    6. https://themighty.com/2016/06/honest-facebook-statuses-about-chronic-illness/ *******

    7. https://themighty.com/2016/12/always-worrying-about-new-diagnoses-chronic-illness/

    8. http://chronicallychloe.com/dear-diary-chronic-illness-and-fear/

    9. https://mcreyscope.com/2014/09/12/the-stages-of-chronic-illness/ - The graphic in this article is especially good

    10. https://www.psychologytoday.com/us/blog/turning-straw-gold/201301/5-tough-choices-you-face-when-chronically-ill-or-in-pain

    11. https://welldoing.org/article/emotional-psychological-fallout-chronic-illness

    12. https://www.psychologytoday.com/us/blog/turning-straw-gold/201601/day-in-the-life-chronic-illness