Precious Diagnosis: What’s in a Name?

Even if it’s a terrible diagnosis, you crave even the worst titles, just to have a name. Just to put a label on what your body is experiencing. You dream of a diagnosis for the madness eating away at your body and your life.

You want to scream when test after test comes back normal, appointment after appointment ends with no answers, and you wonder how much longer your body will hold out like this. Each frustrated physician and specialist is at a loss and they know anything more they try could likely only make you worse. So one by one, they set you free into the river of uncertainty to face the un-named beasts in you alone– ALONE.

Instead of one confirmed diagnosis, you have a list of conditions which are more like guesses your doctors have labeled your symptoms with. “Chronic Migraine” for example, or “Vertigo.” You know they are only symptoms of a larger, more pertinent illness no one can pinpoint.

When I was 22, I was lucky enough to be diagnosed correctly and immediately with a terrible chronic pain condition called RSD/CRPS. The early diagnosis didn’t help me find remission, but I know that being diagnosed helped me gain some stability. Instead of blaming my body, instead of staying up nights searching online to figure out what might be wrong with me, instead of searching far and wide to find the answer to the screaming question disabling me, I could turn to knowledgeable doctors or helpful research online. I could reach out to support groups with the name of my condition. I could blame my disease, and so could my family.

At 28, I had a different experience. After spinal cord damage from a procedure, and a terrible reaction to the experimental medication injected, I became more ill than I have ever been… and I’ve been undiagnosable since. Everything was different this time. Tests were normal, doctors gave up quickly and treated me like they were afraid of me. The chronic pain community I leaned on for so many years prior were also at a loss. I felt so alone, and it seemed that my body was trying to kill me.

Even if it’s a terrible diagnosis, having an answer, having a community, having a list of symptoms, expectations, FDA approved treatments- is so validating and valuable while you are suffering so fiercely. You can finally give a name to the monster bullying you, instead of constantly blaming your own body.

When you have a diagnosis, those who love you can advocate on your behalf. They can organize fundraisers and walks, they can hate the illness inside of you. But when there is no name, people doubt you. It doesn’t matter how sick you are, if you can’t identify why you are unable to move or speak or eat, or leave your bed… people wonder about your sanity. They wonder about your will and your strength.

They’ll say you haven’t done enough to get well. They’ll say there is more you could do, and you are just unwilling.  On the flip side, the same people  will later whisper that you became obsessed with your illness and seeking out treatments- that it consumed you. Yes, you are trying to save your own life. And your life is worth fighting for!!! Giving up is not an option!!! Be proud you are so aggressive. Anyone who isn’t aggressive on your behalf should be ashamed- not you.

I have come to accept that my diagnosis is “Complex” and may in fact forever be “Undiagnosable.” Managing the nameless, and finding doctors who are willing to try and do the same is my path now.

We do have some labels that work to help us find each other, support one another, and build community. We can fight together as warriors with a united cause. We can be identified by “chronically ill”,  “rare disease”, and “spoonie.”

We are undiagnosable, for now, our illnesses are unidentifiable, but we are not invisible! 

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About abodyofhope

I do not know why it is that we must wade through tragic circumstances to find truth. We nearly drown! But under the water, there are pearls. I hope in writing this blog, more will come to the surface. Over the past 13 years living with chronic pain, patient advocacy has affected my life through so many remarkable young people, women and men: SURVIVORS. These individuals are HOPE personified. I wish to honor them in the same spirit they have encouraged me to press on. Six years ago, I became bed-bound from a variety of chronic illnesses after a procedure meant to help the pain condition I had been managing for several years- went bust #BIGTIME. In the last 6 years, my entire life has changed. I have changed, but I am still striving to live my best life possible. Along with sharing inspiring pieces, medical/holistic research, and awareness articles, this blog is also an attempt to put my own pieces back together. Welcome to A Body of Hope, and thank you for visiting. [Complex Regional Pain Syndrome/ RSD, Postural Orthostatic Tachycardia Syndrome (POTS), Dysautonomia, Chronic Intractable Migraine, Cluster headache, Trigeminal Neuralgia, Occipital Neuralgia, Hypersensitivity to Sound & Light, Fibromyalgia, CFS/ME, Cerebrospinal Fluid Imbalance......blah, blah, blah] >>> P.S. My headgear is protective for pain. I just rock it hard.

Posted on March 9, 2016, in Chronic Illness, Medical Research/ Treatments, Uncategorized and tagged , , , , , , , . Bookmark the permalink. 17 Comments.

  1. Been thinking about you a lot. You are such a fighter and an encouraging and inspiring voice. Sending you lots of strength.

    Liked by 2 people

  2. All that you said is so true and you are so articulate! And, alone as it feels to be without a diagnosis, it must be far more alone without a doctor. My prayers are truly with you. ❤

    Liked by 1 person

    • I thought of you as I wrote this, as you went through this for so many years… What a long journey for you 😦 Having the community and the name finally must have been such a validation and gift after all that time in the dark.
      Thank you for your prayer, Jane. I appreciate it so much ❤

      Like

  3. Reblogged this on Finding Out Fibro and commented:
    From my favorite blogger and one of my best friends in the whole world, this is a timely piece for rare disease month.

    Liked by 1 person

  4. Excellent post! It is so true what power a diagnosis holds in this medical system. Feel free to check out my blog and leave comments.

    Keep up the awareness raising!

    In solidarity,

    Pippit

    Liked by 1 person

  5. Hey, a close friend of mine has ‘spoonie’ chronic pain (I like that one), thanks for vocalising the frustration he has been going through for years.He’s had the doctors being scared of him, not knowing what to do. And it’s so encouraging to see someone supporting the research into actually trying to do something about it, because I don’t understand when other friends of his don’t want to help with the search. I feel better about my own aspirations to help.
    Mant thanks for your post xx

    Liked by 1 person

  6. Such a meaningful post, I can tell it comes from your heart. I can so identify with so many of your feelings and thoughts-I’ve had many of them over the last 15 years. I am so glad you never give up and that you have this wonderful blog that inspires and enlightens. Sending a big gentle hug and love ❤

    Liked by 1 person

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