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!

©2024butyoudontlooksick.com
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  • Elspeth

    I think most of us have been in this place at one time or another in our search for an answer(s) to mystery symptoms. Feeling much alone, worried, angry, jealous. And if we do finally get a diagnosis, it can still be a mystery, and possibly debunked by other doctors who have never heard of a given rare condition, or believe it to be something akin to “junk science.” The roads we travel are never easy. I’m thankful for this board because even if I do have a mystery/rare disease, no one laughs at me, or tells me it’s all in my head.

  • Beth Worley

    I have a diagnosis, but still envy some of the others, the ones with diseases people have heard of. When someone hears you have atypical trigeminal neuralgia, they are totally lost, because they don’t have any clue what trigeminal neuralgia is, much less what atypical is! So when I find someone else to commiserate with, and they tell me they have something that is VERY well known diagnosis, I want to scream and yell at them, even though it’s not their fault I got the luck of the draw, and was given the rare one. I have a lot of people around me that tell me that if I just pray hard enough God will take it from me…. well, apparently he’s not taking my calls this century, so I’m winging it. It was nice to know I’m not the only one that gets tired of being jealous of other sick people… and I’m not the only one out there that gets tired of changing meds constantly to try and get just a moment more relief out of the day…

  • Elizabeth

    Your story tore a whole in my heart when I read it. I am sorry that you don’t have a diagnosis but I do and beleive me it does not take all the feelings you have away. I have Systemic Lupus and have had it for many years. I am treated and yes I can say I have Lupus but as the name of this wonderful site is, I don’t look sick therefore people wonder do I really have a disease as bad as it appears? How can I be in so much pain when I “look” alright to them. Why do I have a handicap sticker, I have seen you walk and you look ok to me. This is just a few of the things even people with a diagnosis go through. I hope you get a diagnosis because that will in fact bring you some closure but I woud hate for you to think that that is the end of the feelings you currently have because it will not be. Blessings to you my friend.

  • My goodness…the out pouring of support and kinship is astounding. It MUST be in the air or our food or our water. The generational pact can not be ignored. SOMETHING is wrong with the world and we ate it up. Now we’re all sister in the palace of Sickdom. Bummer. But how wonderful to feel less alone. This is my group therapy, as I can not find one I fit in with. Yes, these comments I think I’ll find myself returning to in times of mental anguish and frustration. Just reading you all, hearing you all, makes putting my soul out there worth it. Thank you, each of you.

  • Clare

    Well said! Whether it’s an invisible disease, a rare disease that few have heard of or one that can’t yet be identified, each brings its own problems. I have a few diagnoses, but none of them explain the exhaustion that follows me around. I’ve just spent the day with my mother trying to put a face on and be pleasant when I feel like I haven’t had any sleep in years. I explained to her but while she tries to get it, she has nothing in her experience to compare it to.

  • katrina loughlean

    So glad to have you on here as a new writer. You are very good indeed and have hit the nail on the head here….keep it up!!!

  • Stacey

    WOW!!! I’m amazed to find so many other undiagnosed spoonies!!! YAY!!! At times you truly do feel alone when you are undiagnosed.

    How do you explain it to people? Normal people don’t get it. I just say ‘I have something genetic that resembles Myasthenia Gravis.’ Then I usually have to explain MG. Not much to say after that.

    We’re unique. All we can hope for is advancement in the treatment of the currently diagnosed diseases, as it might accidentally help us too.

    Nice to know I’m not alone! 🙂

  • NTE

    Oh boy does this ring a lot of bells for me. I’m sorry that there are so many questions for you (and for so many of us)… but the jealousy and anger? You are so not alone with those, my friend.

  • Carlo

    My favorite part is when the doctor takes a look at me and assumes my weight is responsible for every problem I have. They won’t even consider there might be another, underlying cause – that perhaps that underlying cause could be the cause of the weight problem. No wonder doctors don’t want obesity itself classified as a disability. It just sounds like more work.

    My other favorite part is, after being undiagnosed for I don’t even know how long, if I do a little research and come to my appointments with informed questions, I get the eye-roll from doctors, who think they’re the only ones who know how to do medical research – like no one else has ever heard of MedLine or HealthSource or CINAHL…that the average Joe really CAN get their hands on JAMA and NEJM, among others, and even (gasp) read and understand the studies that are published there. Some of us know the world of medicine does not end with Wikipedia. As soon as I do this, I become a hypochondriac who should be ignored.

    Believe me, I have other things I’d rather spend money on than medical bills! I wouldn’t be asking over and over if there wasn’t a real problem.

  • Pamela

    Dear Sonja. Dearest Sonja… thank you. You are not alone
    9& it appears, neither am I); in your feelings of longing or your punk looking, art making, book reading freakishness. I’ve been diagnosed with fibromyalgia for years now along with a slew of other things, but I don’t really fit the bill for any of them clinically. It’s a conundrum that leads to these exhausting pushes of investigation followed by intense periods of despair, then short regroups before we do it all again. The cycle is maddening and I too long for some concise enemy that I can rail against… bc that’s how I’ve lived my life. That’s the worst part and I suspect from your description of yourself it will resonate with you. I am and have always been a fighter, but now at least half the time I feel like & know people see me as, a big wuss! Here to tell you, remind you (& myself) it ain’t true!!! 🙂

  • I truly thank God for each and every person who shared on here! Just reading other’s stories and struggles stenthens and inspires. Though I haven’t shared my own for quite a while-(I just got tired of writing it all down, it’s been close to 20 years), I know you all know how we can relate to one another. It is indeed another day and we’ll carry on, knowing we are not alone. Thanks for sharing parts of your journey’s<3!

  • Sam Barnett-Cormack

    This speaks to me so strongly. My fiancée has been undiagnosed with a range of debilitating symptoms for years, and over the last few months I’ve come to understand more, as I’ve developed a balance problem that doctors are already being cautious about, warning me that they may not be able to diagnose it. I’ve illnesses of my own, and spent 2 years working towards a diagnosis of narcolepsy a few years back. Now, though, without knowing what’s wrong, without having that nice (horrible) label to apply, it’s hard to know what to do, how much it’s worth adapting. My fiancée still feels like that about some things, particularly visible adaptations and asking for help, after more than 3 years.

  • Syler Womack

    We need to remember that even the most unwelcome diagnosis is, at the very least, a form of affirmation. My heart hurts for the people who don’t have that most ironic of comforts. HEY! *I* believe you!

    Love,
    Syler

  • Laura

    ditto on validation.
    7 years ago my PCP told held my hand, looked into my eyes and said,”I’m so sorry, you have MS…”and then said, “but that dx has to come from a neuro.”
    and then, neuro said, “it’s too early in the disease to see it on a piece of paper.”
    uhm, excuse me? I am not a peice of paper!
    7 years now, every sx in the proverbial book a new neuro, yearly mris’ -and nothing shows up on them……that is a clean peice of paper. I truly have come to believe half of the problem is insurance companies.

    i have the technical dx (central demyelinating disease of unknown origin) of MS, with no help. I don’t necessarily want a parade, or ribbon, just someone to make it stop. That would be a great place to start.

    I’m so sorry that so many people are in this place. My heart goes out to each and everyone of you. I know your frustration and desperate need for validation.

    I know that place where everyone around you thinks you are a bit nutty, talking about what hurts today, and how you can’t see in one eye or taste, or stand up without tipping over. I’ve of late decided to cast my cares and when I fall over then I’ll be able to say “see? I told you.”

    ((((hugs))))
    and spoons galore.
    lah

  • Michelle Hooper

    Great article…I was diagnosed approx. 10+ yrs ago, and today I still look for a different diagnoses. I keep thinking that, it can’t be JUST fibro making me feel this shitty…not that I want to be sick with anything else. But I come from a small old behind the tmes town with a group of Dr.s that do not “approve” of the diagnoses of Fibromyalgia. They make you feel like it is just a trash can diagnoses, that you must just be an overworked Mom and husband, a crazed housewife, a hypocondract, or a drug seeker…so I now have kind of a fear of even telling people that I have Fibro. I am so worried about the “ya sure ya do” responses, that I actually almost want to have something else wrong with me so I can blame all of this firo on it then maybe…just maybe, I will be taken seriously. Even though I did every possible test out there that would conclude in fibro being the only possible thing I could have wrong. I am comming to better terms with the fact that this IS my Fibro…I feel like this because I HAVE Fibro. I have learned over the yrs to pick and choose my dr’s better, to ask questions when calling different Dr’s, to not be ignored or bull dogged, or pushed out the door because they are too busy for another “fibro patient” And most of all, I learned to stand up for myself! I still feel bad about cancelling appts or lunches or school things with my grandkids, but if my friends and family know me at all, they now I must really be feeling bad to have to cancel. I think the guilt is the worst part, besides the obvious pain, but it something I am going to have to figure out.
    Your article really is great!! Keep posting them! I love to read others stories…reminds me that I am not alone in this! Best of luck to you.

  • Fran

    Oh I so know how you feel hun – I spent years being in the wilderness !!! All I can say is keep your chin up and hope they find a name for you 🙂 Hugs xxxx

  • Clare Radford

    Dear Sonja,

    Thank you for a beautiful post. I have only recently discovered this site after living with a mystery illness since I was 15. I share your frustration with feeling so misunderstood, getting told you are lying or exaggerating, and loosing friends because they don’t understand why you keep not being able to see them. Thank you for your excellent words. As much as there is solidarity in mystery illness in these sites, there will always be for us that sense of feeling lost and lonely in our un-diagnosed state – thanks for being willing to take the time and energy to try to break through some of that fragility and pain. You are wonderful. Bless you and your family, I hope the moments of peace and happiness can still be found in the difficult times.

  • Hannah

    Thank you for writing this. I needed to be reminded that I am not alone. And you aren’t either, we’re all in this together. I hope you find you diagnosis soon, I hope I do too.

    Thank you.

    -Hannah

    PS. If you ever need a Spoonie friend to talk to feel free to PM me!

  • L

    I’m so glad you wrote this. I also fall in the land of the “undiagnosed.” Well that’s not completely true – I have been diagnosed with fibro simply because the doctors wanted to slap some kind of label on me because they didn’t know what was wrong. But I know I don’t have fibro. It’s my joints that hurt, not my connective tissue (for the most part). Most doctors think it’s in my head. I’m sure I have sf neg arthritis. If a doctor would just apply him/herself in my case, maybe get x-rays/mris of my joints, of my whole body even. I could prove my case.

    I need a “real” diagnosis so I can get some form of treatment, some kind of help. I can’t work, I can barely function at school (part time), I spend most of my days in bed. No one seems to understand what an issue simply moving from my bed to the bathroom is, much less holding down a full-time job and full-time university. If I had a REAL diagnosis (not implying fibro isn’t a real diagnosis, it’s just not mine), I could be treated. I might even be able to apply for disability. I feel bad when people tell me “I have lupus” “I have MS” etc. But I’m a little jealous too because at least they have treatment, at least they have a small chance of feeling better for being on the right meds. At least doctors look at you with some nuance of respect in their eyes instead of looking at you like you’re a junkie wanting the painkillers for their next fix instead of simply being able to exist in a pain-free (or at least less pain) world.

  • I was finally giving a diagnosis in 1999 after they found me falling asleep for no reason at my desk on top of the amount of pain I was feeling ‘for no reason’
    They said”Fibromyalgia”, then withing 6 months they said “Psoriatic Arthritis”.
    Down the line has been added Osteoarthritis, Hypothyroidism, Diabetes and of course with the fibro-fog I can’t remember if there are others.

    In the end, it really hasn’t helped me much to have these ‘labels’ to be honest with you. Except for the 10 prescriptions and every 6 weeks I sit with an IV for 4 hours.
    I don’t know that I feel any better.
    I still have pain, I still am exhasusted. I have still lost friends and famly. My daughter even moved out when she was 17 because she was feeling too much pressure to take care of me.

    Having that ‘label’ doesn’t fix anything. It just gives us something to call it. It’s still immune based, they still don’t know what the h#$* to do about it. Obviously or I woulnd’t feel like I need to move into an old folks home at 47.

    There IS not QUALITY OF LIFE like this. They don’t understand, and can’t understand because they are not in our shoes.
    Many of them don’t WANT to understand, because then they might start understanding me.

    I can say I have Fibromyalgia and Psoriatic Arthritis all day long. It doesn’t change a thing. Except of course the fact that the Psoriatic Arthritis just gets worse and worse and I may end up with claws for hands, then I really won’t be able to do anything for myself.

    Sorry if this comes off horribly. But I am in a pain flare that is the worst I’ve ever had. And for some reason I can’t get the rheumy to understand. and the Internist won’t touch it because of the rheumy.
    Has anyone ever eaten benedryl just to sleep so they don’t feel the pain? I’m not trying to commit suicide, have already tried that… not worth it. But when I can only sit up for 10 mins…..

    I pray to all the gods of all the different religions that we all find a way to FEEL BETTER, REASEARCH to find out why, so they can FIX it.
    That’s the only thing that is ever going to do any real good. If they can FIX IT.

  • Angie Hance

    I understand where you’re coming from. I hope you don’t feel guilt to go along with everything, you arewell justified in these feelings. I have gone through the same thing and I currently have a tentative diagnosis but until I can see a rheummy, I can’t get a complete diagnosis. I think to a point, we need the name of the disease to have something to scream at, to research, to try to come to terms with what plagues us. I hope you get a solid diagnosis so that “they” know what to treat. I also hope that you keep writing, you did a wonderful job expressing what you have been going through. I hope it helps you get some of the anger out.

  • Kristina

    The dreaded world of limbo-I spent several years there. Lost my long time physcian (by choice) after hearing him tell me for 6 months he thought I had MS even though a specialist in MS said I did not. Got copies of my med records from him, and the whole time he was telling me I he thought I had MS, he was writing in my records I was psychosomatic. After several years, I had an “event” that led to a diagnosis. Still, symptoms that don’t “fit” with that diagnosis have left me in “limbo” once again-this time it is the doctors telling me something else is going on and they don’t know what. Not very reassuring when the last time they didn’t know “what” nearly cost me my life. I am tired of hearing “it just hasn’t shown itself yet”, and “you are a very interesting patient”.
    The reason we “crave” as you put it, a name for our illness(es), is NOT because as some would say, we WANT something to be wrong with us- it is because something IS wrong with us, and we need to know what it is so we can treat the root issue-not just the symptoms. Psychosomatic symptoms are very real and is an illness and diagnosis in itself, however it is also an “easy out” for doctors when they are at a loss, and that simply is not fair to those of us living with symptoms that grossly interfere with our lives.

  • You know i still get tears when i read some one who is like me i have had fibro,lupus,rum-aurt. ect. and so glad to know i am still not crazy i went 5 yrs undiagnosed and found a dr. who was young in the field after 5 yrs of this and that go here and there and still nothing its all in ur head !!!! he put it all togather praise the lord !and so i have been on meds for 10 yrs and still it dosent help most of the time, and i pray daily for a cure for us the silent ones please lord help us with this chronic illness. susan

  • Sharon

    Me too. I’ve had a couple diagnoses, always tentative and usually retracted. I also have a daughter who was born 15 years ago, and has mental retardation and physical problems with no known cause. Genetically, she seems fine, but has neurological ‘soft signs’ that hint at genetic issues. I remember so well when she was young that desperate need for a label…just so I knew where I could march, and raise research dollars, and find ‘the’ support group. Alas, neither of us has those. Every few years, leading geneticists call me up and ask me to trot her in there because they’re SURE this time they’ve figured out a new test that will solve the enigma. So far, 15 years in, they’re still sending us home with no answers. I was really struck upside the head then at how much we humans crave the prediction ability that comes with a diagnosis. Will she ever get better? Will her life be shortened? Will she be happy? And now here I am, partially diagnosed, facing the same questions. But somewhere, about 10 years ago, a peace came over me as I realized I could make us crazy looking for answers, or settle into dealing with today’s symptoms and mitigate them as I could, as they come. If I can’t predict, then it Might get better…at some point for both of us, a diagnosis is only limiting. If what either of us has is this rare, there won’t be any treatment anyway. So bleep it, I don’t want to know. I go out to dinner once a month with other (varied) special needs moms, and for me, I have my spoonies, where the specifics aren’t as important as the general camaraderie. I still get the fleeting diagnosis envy that you speak of, but at least without it I have no ‘you should be leading the fund raising’ guilt either. 🙂

  • Sonja, in a few months Whittemore-Peterson Institute will have an MD on staff and be able to treat patients. Hop on Amtrak and be delivered a few blocks from WPI a few hours later. Since NeuroImmune is what they do, they’ll figure it out if anyone can.

    Right now, they have researchers (who found the XMRV retrovirus) and have some interesting ideas, but without an MD, they can only research and not prescribe.

  • Dreama White

    I too was undiagnosed from childhood till 4 yrs ago. When I was a child, I was told, ” it’s your thyroid (hypothyroidism) when it’s not functioning as it should and it’s growing pains ” . As a teen ager Docs said “It’s also stress and depression” . When I was in my mid 20’s, my doc of 15yrs said “It’s all in your head. Stress & depression will do all this to you”. A different Doc only ran the usually CBC and Thyroid work-ups and said “I know something is wrong with you, I just don’t know what it is” . Finally I found a dedicated Doctor who ran test after test after test, also each time asking me new questions reguarding any symptoms I missed telling him about. Once he ran the last test and said “You need to see a Rheumy asap”, I thought to myself….”Well, he found something, but this other doc will disagree and I still will get no help or diagnosis”. To my surprise, Rheumy said I had Lupus. I had finally found 2 docs who did not treat me as a “Horse walking through Central Park”. They listened, treated me as I was not just a ‘common patient with common symptoms’, and put all the pieces together. For those undiagnosed, make a list of every problem/health issue/symptoms you have or have had (when and how many times, etc). You may not think they are related, but they could be! When 1 Doc will not listen, move on to another, until you find that Doctor who hears hoof-footsteps and does not think they hear a Horse, but who hears the footsteps of a Zebra 🙂

  • Joanna H.

    From the very second I read just the first few lines when posted on Facebook, I knew I was going to love this letter. It finally loaded for me and I got to read it. I’m blown away! Why do we feel like we could just scream out to the top of the world at any second but when it comes down to it, we never really do? I’m among that land of the “Undiagnosed” and so there with you. I feel every word as it was written here. Thank you!!

    Love,
    ~Joanna

  • Lisa

    Thank you for the wonderful, honest article. I know the sick kind of relief of finally getting a diagnosis. I also know what it’s like to be unidentified. ex: Dr speaking tp Fellow, “She has the whole house of dna for Lupus but b/c of her other problems we don’t really believe it’s Lupus”. next statement, “we often see this with people with Lupus” huh? At least she is treating me. I have the misfortune of knowing the names of many of my problems but I also know what it is like to be told as a teen your pain must be “hysterical conversions” because the surgeon can’t fix you or be told “you just need a vacation after thousands of dollars in tests and then finding out the $10 monospot test was positive and you are already in relapse. crying with relief that some doctor tells you, yes, you are sick. Automimmune disorders do replicate and it can be confusing to tell what you test postive for vs what is really wrong. But you are a spoonie, thanks for sharing/validating.. Didnt they tell you you have UCTD?(undifferientiated conective tissue disorder” That seems to be the new vague place diagnosis. we could go on vista print and made up bumper stickers or something

    Lisa
    (Amniotic Band Syndrome, osteoarthritis from birth defects, epstein barr, chronic fatigue, chronic recurrent lymphagatic cellulitis and/or osteomyelitis. Sjorgen’s? Lupus? UCTD. Type 2 Diabetes, PCOS, fibro? did I forget anything due to brain fog?)
    we are all in this together…I am a spoonie

  • I have been there, more than once. I was sick for six years before I was diagnosed with Sjogren’s. That was in 2003. My docs started taking me seriously, I found support groups and all that stuff, and then I moved to another state in 2006. The new docs promptly un-diagnosed me and told me I couldn’t possibly be disabled. Had to make a visit to the Mayo Clinic (not covered by insurance) to have the Sjogren’s re-confirmed, but my long-term disability insurance was permanently discontinued because they chose to believe the idiots who un-diagnosed me.

    I’ve been sent to shrinks, I’ve been told I could be cured by exercise, I’ve been put on anti-depressants even when I wasn’t depressed. Autoimmune disease has such a wide array of symptomology that docs don’t even remotely have a handle on it. Most don’t understand sero-negative disease. I don’t have Sjogren’s antibodies in levels high enough to be measured on a blood test, yet have all the symptoms and the salivary gland damage to prove it. My official diagnosis on the SSDI evaluation was “autoimmune disorder of unknown etiology” because of my negative blood work.

    I hope you get some answers soon. There will still be people who will choose to not believe you, even with a name for it. But you’ll be better able to narrow down proper treatments, maybe find a support group, and you can start a parade if there isn’t already one for your disorder.

  • You are NOT alone!!!!

  • Allison Watson

    my heated blanket does not get hot enough. I wake up in pain multiple times through the night and day as it seems
    i spend most of my time in bed.
    i am tired of saying to myself that some people have it so much worse. Right now the weather is cold and rainy.
    i could use a wheelchair to get around if it would not kill my upper body. it hurts so much to walk.

    i cannot take anything narcotic due to a high sensitivity to medications.
    i have tried all i know to try.
    i have 2 grandchildren i am practically raising, and a wonderful husband who tries to understand, he puts his wants and needs on hold to help me so in that very immense way i am blessed, but lets add to the anxiety and occasionally wonder how long he is going to put up with a saddlebag like me.
    i’m tired of being in pain that no one understands. i’m tired of watching friends and family not comprehend – i’m tired of being tired.
    there are medical conditions that are worse than this, but right now, i can’t think what they are.

  • Mary

    I’m right here with you too. The diagnoses that I do have are all “speculative”…it “might” be gastroparesis, but we can’t test for it because your stomach is a pretzel. It’s “most likely” complex migraines, but they don’t “fit the typical profile”. Then there are the unknowns…every time I get blood work done my doctor has to ask me again if I’m on thyroid medication (I’m not) because my blood work shows that I’m on too much and also, am I getting over something because my white count is high…I’ve had four operations in nine years, they’ve taken three organs and twisted my stomach into a knot…each time I’m told “you’ll feel so much better after!” and I do for a while, but inevitably the next domino falls. I’m 37, a mother, and I live with my parents because I can’t work but Social Security won’t accept my ailments. Please, take heart…you may feel lost and alone, but you are wandering on a plane of existence that is well populated and just as lost as you.

  • Debbie

    Sonja, I so relate to what you are feeling. I honestly think I probably had lupus/fibro since I was a kid. I always had so many issues with illnesses and aches and pains since as long as I could remember. I was only diagnosed 2 years ago (I am 44 yrs old now) after going to many, many doctors being told many, many stupid things from its all in my head, I’m depressed, etc.

    Even after my diagnosis, I had doctors tell me that I could not possibly be in as much pain as I was describing, and these were doctors who supposedly specialized in this field!! I was put on methotrexate and planquenil, as well as steroids and folic acid with no real explanation of how any of these meds could help me feel better. I decided I would start this regimen and give it a try. The chemo made me feel sick for a while and even now, still makes me feel a bit “icky” every now and then. Thankfully, my hair did not all fall out, but my lush head of hair is not quite thin! My husband and family in the beginning were all worried and were with the program, so to speak.

    Within the past several months, my husband says he is “over it”, that it’s all in my head and that if I would just put it in my brain that I am better, than I will be. Don’t we all wish it were that easy?? My pain is getting so much worse, especially with the weather up here getting much colder and damp. I lost my health insurance, so that contributes to my stress about this illness. I am on LTD and cannot afford COBRA, so that leaves me in a very bad place. In order for me to get any kind of medication to assist with pain relief, I have to go see a pain management doc, and most of these docs charge at least $350 for a consultation and then monthly visits at around $150. Now I don’t know about any of you, but that just is not gonna happen for me! So….. that leaves me suffering with pain and a heating pad, hoping and praying for relief somewhere!!!

    My family is obviously getting tired of asking how I am today (which I don’t ask them to do) and so are my friends. I wonder if they know how tired I am of feeling this way!! I wonder if they could ever understand what this disease does to us!! How when one day you are working 14 hour days and loving your job and the next you could barely get yourself out of bed to go to the bathroom!!! I wonder….

    I would never wish this wicked disease on anybody, not even my worst enemy, but what I do wish is for every person out there who doubts those of us dealing with this to walk in our shoes for just ONE DAY!!!

    I wish peace and happiness for all of my fellow spoonies and keep hoping and praying that someone will find a way to fix us all very quickly!!!

  • Maureen

    You are never alone. You are also not the only person that a doctor has called an enigma. It has happened to me and while I know the doctor was frustrated in that he couldn’t help me, it’s not a label that I want or would wish on anyone.

    It took five years before I received a diagnosis of ear/balance problems. But, since the ENT could not figure out why I lose my balance, he can’t refer me to such things as support groups in the city. If I had a stroke, yes. If I had MS, yes. Have a balance issue where the cause is not known? Don’t have a name to replace enigma? Find “a quality of life” is all he could offer me.

    There are so many times I want to be proactive but I just run up against that wall and end up on my back. Some of the symptoms I have I can trace back to the ear problems. I know that some of the other symptoms are for something entirely different and the internist (Dr. Enigma) said so. But, no name, no cause…not much help. You know how it goes.

    I hope you soon get the diagnosis so that you can find the peace and stress relief that comes with having something that can be named.

  • Amanda

    Thank-you. Thank-you, SO MUCH for writing this. It’s something I have thought time, and time again.
    We all suffer in different ways, and we all have our own loads to bare. But somehow – I always think it would be easier if I had a name.

    The look most people give, when I say ‘I don’t know what it is, but it’s been hell for 7 years’, is almost always one of disbelief. The people who only ever see me at my best, because that’s the only time I can leave the house, never seem to believe that I am ever otherwise.
    Not having a name also makes trying to get onto disability (which is hard enough by itself) so much harder.

    Why is it that people react so differently if you can give you ailment a name?

    I really can’t deny how many times I’ve been jealous of friends who have a medical disability of one kind or another, who have a name to put to it. I don’t want to be, but I am. It seems so silly, too.
    But it’s also so hard to talk about. No one ever wants to hear how someone is ‘worse off’; and I don’t want to say that I am! – because there’s no scale to determine that. But it *is* different, and often harder to *explain*.

    Not having a name to put to the problem, makes things feel worse, and makes my world feel smaller, somehow. 🙁

  • Like Isabelle commented, I too became outraged when I was finally diagnosed 11 years after seeing doctor and specialist after doctor and specialist.

    Even though I knew I had endometriosis, I couldn’t be SURE until someone would diagnose me, so I was in the land of the lost for many years, too, also creeping alongside the diagnosed.

    Imagine my heartbreak after 4 years of enduring the doctor-go-round, when I got referred to a surgeon in 2001…who flat out refused to give me a diagnostic laparoscopy.

    Six years later – the moment I got straight up PPO insurance – surgery was no problem!

    The problem was that the jobs I had worked for the previous 11 years had only offered HMO or HMO-like insurance (research the Brown & Toland settlement for example). I was told I had nothing wrong with me to “you have IBS” to “see a chiropractor”.

    Frustrated is not even beginning to describe how I felt.

    The point to the story is that even when you do finally get that diagnosis, it will only be a little sigh of relief. You’ll still need to process the anger and frustration over the doctors having taken so long and having made so many wrong assumptions and errors along the way, because they are hog-tied by health insurance megacorporations.

    Stay strong, my fellow warrior spoonies!

    Love from a fellow freak in the SF Bay Area,
    steph

  • jen

    You have such courage to articulate what you are feeling……and you are NOT alone as cliched as this might sound……spoonies are precious friends xoxoxo

  • Sapphire, done that-Mayp sucks, don’t waste your money or your spoons, you are LITERALLY just a number there.
    Sonja, thanks for the post, and thanks to everyone who replied-been there, done that, felt that, tired of it. Tomorrows another day. Blessings to all.

  • Chrissy C

    I’m 37 and I was recently diagnosed with Grave’s Disease and hyperthyroidism. They otld me for years it was ” all in my head ” and tried to give me anti-depressants. Don’t give up, you will get the right test and *WHOA* you will know and can be treated. Sending healing energy to youC

  • Lilli

    I too am not properly diagnosed… and it is a very sad, dark place to be. I have suffered on and off for probably 12 years (if not longer), but the worst has been the last 6 months. They are finally closing in on Lupus (have had 1 rheum say yes, 1 say she’s not sure, and 1 say no) but I too am lacking certain positive blood tests. Just had 9 vials of blood run, and it was all pretty normal. I should be happy right? NOPE… All that does is create more confusion… And yet, despite what the blood work says, my body is sick…
    Thank God my GP knows it’s Lupus – he said he’s sure… Clinically no doubt about it… So, I take plaquenil, aspirin everyday, and ibuprofen as needed (which is everyday). My organs are good -thats all I can ask for.
    But you’re not alone… WE’RE not alone….

  • Martie

    I understand every emotion you have explained!! For a lack of a better way to say it…………IT SUCKS!! LOL! I was undiagnosed for 7 1/2 years but was diagnosed about a year ago with Fibro and just recently with arthritis. Even with those “diagnoses” people still think it is in my head!! I have just learned to NOT put ANY expectations on people, then you can’t be let down!! I am so sorry for what you are going through!! You are in my prayers and if you ever need an ear, hit me up…..I’m here:) (((((Gently Hugs))))

  • Sapphire

    Getting a diagnosis validates what you’ve known all along – that your pain is REAL! Your symptoms are REAL! Now you can say, “I suffer from ‘x'” and because there is a name for it, people take it seriously. When it’s a “phantom” or “ghost” pain, as the outside world sees it, they often think it is all in your head, that you like getting attention from doctors… who knows what’s in people’s minds. After you finally get a diagnosis, you’re suddenly “allowed” to suffer.

    I have seen the same psychologist for coming up on 11 yrs now. I am bipolar II. I have had a variety of symptoms over the course of many years. I am obese and many of my symptoms were attributed to my weight. After discovering I had a stroke and through that I found out I had arthritis in my back and neck. Just within the past month I found out I had fibro. He believed I had the symptoms but once I got a diagnosis, suddenly it seemed his tune changed.

    My symptoms are so varied in level of pain, which changes and is throughout my body, as well as a severe stomach pain which nobody is able to diagnose. I was (and perhaps still am?) very close to going to Hopkins or another well known hospital to see if I could get some answers. They are unable to give me any meds for my fibro for a number reasons. The pain continues.

    I pray you get a diagnosis soon. I suffered for a few years, but certainly not over 12 yrs. I am so sorry that you are going through this. Have you considered a big-city teaching hospital? They would be doing research and keeping up with the latest in symptoms, tests, etc. I hope you are able to find some answers to your questions – and soon!!

  • amber black

    Love it Sonja it’s an inspiring story! Continue your writing 😉

  • You are NOT alone. It’s only been two or three years for me and I get the same thing; I have autoimmune… something…. and yet still, the doctor only offers me depression medication. I’m now unemployed and without insurance, so I can’t even visit a doctor to continue a search for diagnosis. I muddle through the day looking for work but I’m so in pain and exhausted I wonder how I would ever manage a full time job, because it’s just getting worse and worse. It’s five days after Thanksgiving and I am just STARTING to recover from it.

    Don’t ever think you’re alone. Always there will be people out there in just your situation. I hope you find a resolution soon.

  • Krista

    I know exactly how you feel. I’m undiagnosed and frustrated on my good days. You are not alone.

  • Patricia Pate

    Why should you not want to know what is wrong with you. I mean a diagnosis at least lets you know what you have and may even help with treatment. I would want to know also and I would be very frustrated and jealous of others too if I did not know. I will be keeping you in my prayers that you will finally get the diagnosis you deserve.

  • isabelle janicaud

    hi hun…i was 25yrs undiagnosed and so know the look those doctors give you.
    having been diagnosed 4 mnths ago at the point where after researching what kind of mental disorder i might have to imagine all this pain i had decided to sign myself into the nuthouse…i cried like agirl when they said youre not crazy…25yrs i waited for that. the diagnosis filed me with a feeling i wasnt expecting….rage…at all those doctors..esp my doc of 20yrs who i thought was listening and cared,but obviously didnt cause 1 stupid bloody test wouldve saved me and my family so much sadness..
    im working through it,and am praying you get some validation and improvements <3

  • Erin

    I’ve been undiagnosed for over ten years now. This was beautifully written and expressed my exact feelings. It’s great to have someone there that understands. Thank you.

  • Jess

    It is such a coincidence you posting about your “green monster”. The other day I got so worked up and nasty with someone who was healthy and didn’t appreciate it. And I mean I lashed out. Pretty much an adult temper tantrum. Then I cried, because I felt guilty for being so wildly out of control with my words. Even though I had valid points, I just came out with guns blazing and ripped the person to shreds. And it was instantaneous, with no warning…I just ran my mouth. I now feel I need to come with a tornado warning to give people a few seconds to realize that the fire that’s about to spew from me comes from a painful place of anguish and suffering over an undiagnosed illness that never gets easier or more understood by those around me.

    I feel every bit about what you wrote. I yell mean things to people who are running on the street because I can’t run anymore, I get angry when people talk about how hard their diagnosis is to deal with and think in my head that their diagnosis is wimpy compared to what I go through, I laugh inside at people who take sick days, and I don’t understand why loved ones don’t want to carry me on their shoulders or have a parade to celebrate how hard it is for me to even wake up. I think we have the right to be a little ugly after what we go through and it doesn’t make us evil. It just happens.I don’t know about you, but I have no outlet for any of my emotions. So it sits and stews inside of me and it usually comes flying out like a demon released from my body. The important part is the acknowledgment of what we feel and the understanding that it’s okay to be less than thrilled with our situation. And that at least helps me cope. Hopefully we can continue to take these unwanted but valuable lessons from our illness and be even more fantastic than before.

  • Corrine

    Beautifully said! I have thought all these thoughts… even the jealousy. I’ve envied many who know the names of theirs. I’ve WISHED for a real diagnosis. I’m Tired of hearing “it’s autoimmune”. So many times I’ve been diagnosed and un diagnosed with Lupus. Then you get the doctors who throw their hands up and tell you its “psychosomatic”. But you also have the other doctors who tell you they KNOW there’s something there, they see it in your blood work and that cant be ‘in your head’ *sigh*.
    I know and feel everything you’ve said… I know it all too well. For 7 years I’ve rode this rollercoaster. I want off. Yes as crazy as it sounds, I would be happy to be told I have a disease…. I’m tired of hearing the whispers behind my back… I’m tired of losing friends and now family. I’m tired of being alone and sick. I hope that you will find the name of your condition… so odd how a name would make things seem so much better.

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