Lost in the Land of the Undiagnosed


Sometimes I feel lost. Lost behind the world of the diagnosed.

There are no fundraisers for me. No walks, no T-shirts, bracelets or ribbons. I am the lost within the lost. Aren’t we all in some respect? Trapped by our bodies and lost to the world. A Spoonie KNOWS what it feels like to cry in that hidden crook, lie about how we feel, and watch the world leave us behind. The feelings of loss lead us to a path into the lost.

  But what of those that have no name? We have no answer for friends who care enough to really hear the answer to,” How are you doing?” We come across as liars. More so with each month, year, or decade that float by leaving nothing but a wake of pain in its path. We loose more and more friends. Those that were steadfast for 10 long years finally throw in the towel. We are convinced that these are the reason, which at least is what we think.

Okay, enough with the “our”, this is painfully with a self involved touch, about me. Perhaps I am alone in feeling this way.

  I find kinship here in the boards. I know I am not alone in my suffering. And for that I will forever be grateful. But I admit the green monster that creeps in my shadow. He’s envious of the organized fundraisers and wishes he could have a name. He is Envy. And he makes an ugly person of me. On the days he sticks his head out, I am nasty. I may be snappy or rude, but I am ALWAYS jealous and angry about being jealous instead of supportive. Even writing it makes me feel like I’ve an ugly heart.

  How come I can not find it in me to just be glad to have the sisterhood? The one’s offering an ear or hug or spoon. And like schizoid-typo, I am both. I wish I could walk for Lupus and MS; while in kind, I long for recognition for MY mystery. It is just as real, but how does one address the invisible? How can I get to healing myself when I’ve no idea what’s wrong.

  It’s autoimmune they say. Those are neurological symptoms they say. But you are an enigma is the written diagnosis for me. Hurrah! I’ve not only felt lost behind those with a name, but I’ve lost my friends. I’ve lost some family. And most disturbingly, I’ve lost doctors who lost patience in my frustrating condition. *sigh* All loss, and lost.

   Why on earth should I be jealous of a named chronic condition? Why do I crave it so? Perhaps I will never know. It just is. But my fellow Spoonies…I will always have love for you and hope to never feel lost in our connections!

Alas, I will continue to creep among the diagnosed. Hopeful for their comfort and financial gain to work that sucker to a cure! All while envious of their Names in the tabloid! These are ugly diseases, but as I’ve learned in here, always existing in beautiful carriers.

Written by Sonja McDaniel (sacredjinx on our butyoudontlooksick.com message boards)

I’m a 37 year old female undiagnosed for 12 and a half years. I live in the SF Bay Area surrounded by my wonderful husband, my mom and all of our rescued critters. I’m living proof that you can’t judge a book by it’s cover! Punk looking, art making’, book reading freak!

  • Jordan

    Thanks for all your reply’s. Im much better now. Turns out i think i was EXTREMELY dep and anxious and eventually I broke the cycle and feel sooo much better. About to start work after loosing my job 4 years ago

  • Grace

    Chronic Fatigue could be caused from hidden dental issue , Read about dental cavitaitons

  • Grace

    I tell you quick story my practitioner told me a very wealthy lady is very sick for years travels all over the world see top doctors for cure. Finally see’s my vibrational medicine practitioners where she tests the body with machine . the machines tests her with parasite she goes on parasite medication at
    the six or seven month mark the lady gets super sick and then she passes a big nest of parasite comes old of her body with her stool. she gets well but stays on parasite medicine for many months I think the key was staying on parasite meds for a long time .

  • Grace

    Having your gallbladder removed is a big deal , they do not just pull an organ out of your body in China They first try to heal the organ very carefully since all the organs work together My friend was sick and dizzy for two years after her gallbladder was removed she finally went to my ND and he knew the cause instantly and fixed it and she was cured! Yes it had to with the gallbladder removal. If you do not have an appendix you supposed to take antibiotic for the rest of your life. A regular MD MD may not kow that but my MD/ ND told me that .

  • Grace

    Doctor’s are human they make mistakes . I was misdiagnosed like 10 times
    one time the infectious disease doctor told the small clinic that there test was not valid method and he would never used that dumb test and they should toss out that rapid H pylori test! Who knew? Thank God I just knew they were wrong and kept on looking. I just followed my instincts. I must write this please do not just have any organs removed, sinus surgery because your doctor has a hunch and you desperate to be cured . Get several opinons Be mindful Surgeries is a big money making venture. I had a friend that saw four ENT doctors one said surgery and the other three said absolutely NO surgery needed.. There were doctor giving people chemo for no reason so they could get a kickback from the chemo company . Saw four dentist for four opinions to look at the teeth one dentist said fracture one said take shots in the area. the other two said no issues found it was a fracture in fact it was true . Buyer Beware !