Precious Diagnosis: What’s in a Name? #raredisease

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Just to have a diagnosis, you’d accept even the worst titles. You dream there will some day be a label for the madness eating away at your body and your life.

You want to scream when test after test returns “normal.” You feel hopeless when time after time, appointments end without any answers- you wonder how much longer your body will hold out like this.

Each frustrated physician is at a loss, and they worry that anything more they try might 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.

Instead of one confirmed diagnosis, you have a long list of symptoms masquerading as conditions. “Chronic migraine” for example, or “vertigo.” You instinctively know that they are only symptoms of a larger, more pertinent illness, but no one can pinpoint what it is.

When I was 22, I was diagnosed correctly and immediately with a rare neurological condition.

There are no words to express my devastation; the world as I knew it had crumbled.

The early diagnosis did not help me find remission, but being diagnosed immediately afforded me some stability.

Instead of blaming my body, instead of staying up nights searching online to identify what might be wrong with me, instead of spending years looking far and wide to find the answer to the screaming question disabling me, I could turn toward the crucial journey of acceptance, coping, and seeking treatments. I sought knowledgeable doctors, read helpful research online, and reached out to support groups with the same shared name of my condition. I could blame my disease for my illness, and so could my family.

At 28, I had a very different experience. I became more ill than I have ever been… and I’ve been undiagnosable ever since. Everything has been different this time around.

Tests were normal, doctors gave up quickly and treated me like they were afraid of me. Hospitals admitted me immediately, but had no answers to give.

I began to feel like less of a person and more like a medical chart. The worse I became, the less interested doctors were in treating me. My value as a person was undermined…

I felt so alone, and it seemed that my body was trying to kill me.

For most patients with rare diseases, it can take years to recieve a proper diagnosis and treatment.


Seven years is the average wait.

Even if it’s a terrifying prognosis, having an answer, a community, having a standardized list of symptoms, expectations, and FDA approved treatments, is so validating when you are suffering so fiercely. Instead of blaming yourself, you can finally name the monster taking you over.

When you have a diagnosis, those who love you can advocate on your behalf. They can donate to fundraisers and participate in walks, they can pray there’s a cure for the condition torturing 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 sleep, or eat, or leave your bed… people wonder about your sanity. They wonder about your personal 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.

Ironically, the same people will later whisper that you’ve become obsessed with your illness and seeking out treatments – that it has consumed you.

If trying to regain your health has become your priority, do not listen to anyone doubting you. You are trying to save your own life. And your life is worth fighting for! You must be aggressive. Giving up is not an option.

You are not the words on a medical chart. You are not a list of symptoms, and your name is not a condition. You are not your medical history, or your pain level from 1-10. You might be in the habit of talking about matters of health, but please don’t forget about the you who has never left. You haven’t diverted from your journey. You’re the person who made you into the fighter that you are today. The unique, beautiful, lovable, sometimes goofball you. You are the only YOU this world has.

YOU are rare.

As for myself, I have come to accept that my diagnosis is rare and complex. It 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 labels which 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 may be undiagnosable (for now), our illnesses might not be easily identifiable, but we are not invisible.


Article also published on The Mighty.

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 15 years living with chronic pain, patient advocacy has had a powerful effect on my life through meeting so many remarkable teens, 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. Eight years ago, I became bed-bound from a variety of secondary chronic illnesses. A procedure meant to help the pain condition I had been managing for several years- went bust #BIGTIME. Over the 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 about spiritual wellness and finding quality of life inside of ongoing illness, I also share health research, awareness information, poetry, memes, art, and 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, Fibro, CFS/ME, Cerebrospinal Fluid Imbalance......blah, blah, blah] >>> P.S. My headgear is protective for pain. I just rock it hard ;)

Posted on February 28, 2018, in Chronic Illness, Rare Disease, Uncategorized and tagged , , , , , , , , , . Bookmark the permalink. 6 Comments.

  1. My daughter Carolyn has Complex Regional Pain Syndrome (CRPS). She’s 43 and living with us (parents). Carolyn was working and going to school.After June 4, 2016, her life and ours changed forever. From one day to the next her feet swelled, her skin was mottled and she was in severe unrelenting pain. About 9 months for diagnosis. Many treatments, medications tried. None have helped. My husband and I are both elderly and I am so afraid of who will take care of Carolyn when we’re gone. Every once in a while when she’s crying she’ll say “I want to go home”. She wants her old life back

    Liked by 1 person

    • Linda, God bless you, your husband and daughter Carolyn. I’m so sorry for all of the pain and loss this disease is causing her.

      I’ve had CRPS/RSD since I was 22, thirteen years now and have recently moved in with my parents as well.
      No matter how we try to keep the pain for ourselves so it doesn’t hurt anyone else, this disease always touches those we love. As her support system, I know that you feel helpless and desperate to stop this. I promise you that your presence, emotional support and reminding her of her old self will mean more than you can possibly imagine.
      Not everyone has 2 people who are willing to love us through this. For me, the first 2 or 3 years were the most difficult emotionally. But in time, I did gain a sense of control over the condition, finally found a combination of several medications that helped me function better, started doing therapies like biofeedback and couseling for pain, and found a support system online with people just like me who could understand.
      There are hundreds of treatments, therapies, meds, infusions, inpatient programs… the combos are endless. But since it is a rare disease, doctors tend to try only a few options, and then give up trying unfortunately. It forces us to go from one doctor to the next advocating for ourselves. I imagine you and your family are already tired of all of the doctors. Have you met any pain doctors who seem to be educated on CRPS?

      I would like to invite her to the private support group, “Gentle Hugs CRPS” on Facebook. I belong to this group, and we can offer Carolyn friendship, support, answering questions in a safe environment and a place to vent and connect with ppl going through the very same pain and problems.

      I think all of us with neurological disease like CRPS look back at our old lives and wish we could rewind time. It takes a long time to accept that forward is the only way now- it’s such a painful realization.
      But forward is the way we fight for our health and to rebuild our lives.
      With your strength and encouragement, there is hope ahead.

      God be with you and your family during this very difficult time, Linda.


  2. Thank you for this article! It fits me to a “T”! I have been trying for a diagnosis for 18 years. I keep getting worse and, hopefully, I am getting close to finding out what have. Also hopefully it will be before I can’t walk, or do anything, anymore.

    I send you good wishes!!!

    Liked by 1 person

    • Wow, that’s such a long time to be fighting for yourself without a name to back you up. My heart goes out to you💔

      I have a friend who was finally diagnosed correctly at 18 yrs, and I hope that you will report back that you are my second friend with your confirmed diagnosis 💜
      Thank you for the good wishes and affirming comment. Peace be with you

      Liked by 1 person

  3. Evening Mary dear,

    Thanks for the post. I wanted to tell you personally in an email that I’m thinking of you and also shared the rare disease post. My mom also did.

    You may have rare diseases dear but the rarest thing in the whole world is someone as sweet, fearsome and awe inspiring as you ??????

    Love Claudia ?????? ________________________________

    Liked by 2 people

  1. Pingback: Precious Diagnosis: What’s in a Name? #raredisease – Life Gets In The Way Of Living

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