The power of knowing a diagnosis…what is it like for the undiagnosed?

21 Dec

I am jolted awake by a throbbing sensation in my left hand. A tiny invisible hammer pounds at the top of my fingers. There is no visible sign of any tiny hammer and no physical evidence that work is being carried out at the painful expense of my left hand. I am left with only one option and fold my fingers into a fist, shove my hand into my pockets and begin my day.  I go to work and wear the disguise of a healthy person.  No one sees or hears the tiny hammer’s relentless attacks.  I am uncomfortable.  The invisible hammer’s work pulls my focus from my day’s activities.  During my meeting at work, I lead it sitting on my hands. I adjust my tasks so I don’t type; e-mails are left unanswered, but I can wear my disguise.  By lunch, I begin to question my sanity.  No one can see this hammer, I can’t even see it, but I can feel it pounding my nails and fingers.  There is something wrong.  I go to my computer and sacrifice my fingers for answers and type into the search engine finger pain and click on and under causes I see the words multiple sclerosis.  I breathe a sigh of relief.  It is just a new symptom. I have multiple sclerosis and this tiny invisible hammer will now be a periodic nuisance that I will live with.

Oddly, I am grateful for my diagnosis as it legitimizes my experience; my invisible hammer has a name and it is believed and recognized. My diagnosis explains the unexplained, but what is it like for people that don’t have a diagnosis, that don’t have a term or a word that legitimizes their experience and their lived reality?

8 Responses to “The power of knowing a diagnosis…what is it like for the undiagnosed?”

  1. spooniemom December 21, 2016 at 4:27 am #

    In a word? Hell. I’ve been undiagnosed for 2 years now and there’s nothing I would like more than a diagnosis. I have written several posts about it, my most recent being The Munchausen Effect. The hardest part about my illness sometimes is not knowing what I’m battling, and worse the lack of treatment for it because they don’t know what it is. It sucks.

    • mynewpossibilitiesproject December 21, 2016 at 4:32 am #

      I was writing to you on your blog- Thank you for sharing. I can’t imagine how difficult it is. Thank you for sharing.

      • spooniemom December 21, 2016 at 4:56 am #

        I just saw your email! I’d be happy to talk with you! Email me anytime! 😊💕

      • mynewpossibilitiesproject December 21, 2016 at 5:20 am #

        I am just coming off a few bad MS fatigue days (you know how those are) I will try and e-mail you on Friday. Thank you so much!!

      • spooniemom December 21, 2016 at 5:36 am #

        No problem! Take your time. I’m always around! 😉

      • mynewpossibilitiesproject January 7, 2017 at 8:21 pm #


        How was your holiday? I am sorry I have been MIA- it seems that work gets all the spoons and by the time I come home, my brain is gone. Being diagnosed with Munchausen is not a diagnosis- it is like being diagnosed with conversion disorder. It is a simple way for the doctors to dismiss the patients. It seems like if they don’t have a clear answer they blame depression or anxiety. I will let you know a bit about myself- I live with RRMS and I am a critical disability studies student doing my thesis on women that are undiagnosed. Have you ever heard of heard of the social model of disability? I will try and be in better touch. I hope you are having a day of great energy and a bouqute of spoons.
        All the best,

      • spooniemom January 7, 2017 at 9:08 pm #

        I have not heard of that. Is it something I should look into?

  2. mynewpossibilitiesproject January 7, 2017 at 9:12 pm #

    The social model of disability? I would love to tell you about it- if that is what you are referring to.

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