Hidden Symptoms of Rare Syndromes

Hey there,

The article is back up, and I want to comment on one thing before I send you the link….

The blogger mentions that many people with rare syndromes experience many emotions, such as: Anger, Fear, Guilt, Frustration, and Self-loathing.  The Blogger delineated ways in which the feelings show up… I am going to add my perspectives on each…

  • Anger over having a disease that’s incurable or my inability to fix it.
    • My take: No, I am not angry about having CAPOS, I have accepted it.  But, my son, who has the same condition, might be angry at me for giving it to him!
  • Anger about the treatment I receive from others who don’t understand my condition.
    • My Take: Treatment?  What treatment?  I have no treatment!  Maybe I am angry because of a Lack of Treatment?  I have a specialist, but always leave feeling disheartened, because it is the same thing, same outcome, “There is nothing I can do to help you.  See you next year…”.  I’m like, Big Whoop!  The last part of the sentence is true, I might get angry at people in general who do not understand CAPOS.
  • Fear about the future. What will happen to me? How long will I be able to do the things I love?
    • My take: This is sort of connected to a point further down, but here, I do not have this fear, per se, what I fear is being financially stuck.  I used to worry about money and finances and making a quick buck.  Also, in the same vein, both of my parents have helped me/us financially over the years, I cannot reciprocate.  That aside, how about my boys’ future?  What about their college?
    • And, for as long as I can stand, I will LOAD the freaking Dishwasher!  End of arguments!
  • Fear of falling and injury.
    • My take: I do not fear this, I know it will happen: I often jive myself “One of these days, a bus is gonna hit me… must wear clean underwear…”…  But, in the meantime, I am usually very proactive and cautious… (My wife will disagree…).
  • Guilt over not being to take (care) of the family or hold down a traditional job.
    • Guilt over not having a traditional job, yeah, that is me… I cannot work, my disability is not going to let me, so I do the best I can with the tools I have… This blog being one, through I would really like to know how I can make it more profound, more widely read.  Other tools that I have is my ability to help other Deaf-Blind in my community.
    • I do take care of my boys when my wife is out, and I make an amazing dinners, my meatloaf is very good!
  • Guilt over having to be taken care of/not being independent.
    • My take: I am not there yet, but I do feel guilty while sitting doing nothing while my wife is preparing dinner, and I am too “unstable” to help, or can’t see/hear…
  • Frustration with not being able to move as you once did.
    • My take: I can still move just fine, thank you!  I fell down the stairs right?  That is moving!
  • Self-loathing; hating yourself for being in this situation or hating who you are.
    • My take: Nope, never!  I am love myself, I cannot fathom hating myself.

There ya go,But I need to go now!

I will add some more “My take’s” on some other points the blogger had at a later point…

Here is the link to the blog… Hidden Symptoms

Please Like, Share and Support!

Catch ya later!

 

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