On Living Without a Diagnosis

“A diagnosis is just a tool to get you what you need,” said a good friend of mine, by way of his therapist. His statement particularly resonated for me because for a long time I’ve been a woman without a diagnosis.  This article is about why I am finally OK with that.

First of all, it’s not entirely true that I don’t have a diagnosis: I’ve been given many different diagnoses by many different doctors.  Some of these labels are simply descriptions: atypical facial pain, idiopathic neuropathy.  Some of the labels don’t really fit me or have that lovely word “Syndrome” at the end of them, and I’ve become so aware of that word I eventually started telling people, jokingly, that I simply have Syndrome.  Some of the labels given to me were taken away later, misdiagnosis: “you don’t actually have asthma, you have paradoxical vocal fold movement!” (a voice disorder that mimics asthma).

I have learned some huge lessons from all my time spent in the medical-industrial complex: doctors don’t have all the answers, and that a good doctor is one who says, “I don’t know.”  Also, chasing after a diagnosis, endlessly, is a game with steeply diminishing returns.  You might get a diagnosis that is wrong.  You might never get one at all that gets you what you need, especially if what you need is outside the medical system entirely.  I spent hours and hours with doctors and nurses, trying out dozens of medications, and in the end I accomplished very little. Meanwhile I invested all kinds of desperate hope that the next specialist might be able to help me.  I am not advocating giving up hope: I am advocating having realistic expectations about the medical system.  Investing all my hope, time, and energy in finding a diagnosis and/or treatment for my ailments was not effective nor enjoyable.  Years later, I am basically in the same state of health that I was when I first got sick.

I have reached a place where I am quite comfortable not having a diagnosis.  I’m sure the medical system does not agree with nor support this stance.  Everyone must have a label, otherwise how will they know what box to put us in, which specialist to send us to?

I say about myself that I have chronic pain and illness.  I have a disability.  If people want to know more than that, I will tell them about my experiences, my feelings, my activities as a disability activist, the way I live my life.  Many people seem to want a label, and for a long time I did too: something to say to the pharmacist, the people at work, my extended family; something simple, something people could understand.  People understand things like migraines, like diabetes or anemia.

There are certainly concrete benefits to having a diagnosis: If I had a diagnosis I could use Google to learn more about my illness.  I could perhaps find support groups populated by people with my same illness.  I could perhaps get government disability benefits.  These things are not impossible to get without a diagnosis, but they are harder to find.  There are, for example, support groups and counselors for people with chronic pain, which my medical system eventually referred me to.

But what I really needed to find was the social justice community. What I needed, and eventually found, was disability identity.  Right here are the tools I need to help me live a life with pain and illness.  Here is a supportive community, coping techniques, theory, friends.  A person doesn’t necessarily need a diagnosis to live here.     ?

11 thoughts on “On Living Without a Diagnosis

  1. Dr Ego tried many things over 3 and a half years before saying about a month ago that he had no idea where to go next and that he’d been doing things beyond a GYN’s scope. (It’s pain in the abdomen and pelvic area! She’s a woman! Shove her on the GYN!)

    Unfortunately, to rule something completely out, I had to have surgery. But we were thorough, and there was much medication and such (physical therapy). I saw a pain specialist and he seemed to think I was on all of them at once. We never operated with a diagnosis in mind, just an attempt to stop the pain.

    The pain specialist gave me a diagnosis, which is vague because dammit, bodies are just… so mean. Neurapathy. (I think) Nerve damage.

    My main issue with no *concrete* diagnosis is getting accommodations. My disability, according to my university, is something that was taken care of over seven years ago. I wonder if some accommodations people aren’t comfortable with “chronic pain” and want something medical sounding. (Hyperactive thyroid or Grave’s disease. The second name is even worse – this is a grave illness.)

    Then again, I withdrew this semester and “chronic pain” seems good enough for the school now… as with so many things, I don’t know.

  2. I like to say I have an advanced case of WTF. The least-specific descriptions of what my deal is tend to be the most accurate. Not having a label or an Emergency makes it kind of tough to get serious attention from medical professionals.

    I’ve seen the gamut from, docs who seem to resent me showing up when they don’t know what to do, to “Not my specialty, not my problem. Not that I know whose specialty it would be.”

    It kind of amazes me that none of the pros I’ve seen have been interested in an unusual case. I personally think it’s fascinating.

  3. I’m autistic but my diagnosis is out-of-date which means that my university and any potential employer who might employ me does not have to actually accommodate me. I was okay with not being accommodated in highschool which is why my diagnosis didn’t remain current but now that I’m in college I could really use some help relating to my executive memory and related insomnia. Since I don’t have a current diagnosis my university can basically tell me to shove it and go away.

    It’s extremely frustrating especially when many people refuse to acknowledge that I’m autistic. … maybe it’s because I have good control of my voice.

  4. I like this post and I love your closing paragraph. I know I did need a diagnosis because without it, I don’t think I could really come to terms with the fact I am a PWD without having a diagnosis as well.

    But I also think I’ve seen a lot of emphasis on having an official diagnosis from some that I find kind of hard to accept. Not everyone has access to the kind of health care or specialists necessary. Some have conditions that defy easy diagnosis. Some people are satisfied with knowing that they have a disability. Some are all three. No one should be required to have a diagnosis to acknowledge they have a disability, or to receive the support they need.

  5. Thanks for your comments! It sounds like some of you have had similar experiences, and how frustrating to be told that you can’t get accommodations with a diagnosis!

    Lisa, you said that very well. Access to health care is absolutely a part of getting a diagnosis and is affected by class, age, race, location, and other factors.

  6. I have very similar experiences and at various times have worried a lot about having or getting a diagnosis. So unproductive! I end up poorer, having wasted a lot of time, and usually damaged or in pain from whatever the testing was. I’m glad in the end that I got ALS/PLS ruled out but not sure the entire process was worth a damn thing.

    Anyway, I think it’s worth asking, if you’re about to get some kind of diagostic testing, what it will test for or rule out and how, and whether any of those differences would change your actual treatment…

    And not having a solid diagnosis does really bother other people more than it bothers me. No one has certainty and I’ve heard quite a lot of diagnoses that people put faith in that just seem wrong to me… or that, having gone to 10 different kinds of doctors and gotten 10 different diagnoses myself that then turn out to be wrong, I don’t have a ton of trust left for any of it!

    So am left with: What definitely works for me and what doesn’t? And what might I try to change, or try next to improve my situation, pain, or functionality?

    Cheers Sasha and thanks for a great, great post!

  7. Thanks for the piece.

    I went through a similar (albeit briefer) journey for 6 months recently. Every diagnosis I have for my symptoms is questionable; I don’t quite fit into the disease categories suggested. Having received an even questionable diagnosis allows me to receive accommodations at school, which is great and better than nothing. It doesn’t alleviate the anxiety about living with diminished vision that nobody can really pin down or treat. However, like you, I have come to the conclusion that the medical establishment can’t really help with this one — and the doctors I’ve seen wanted me more to be off their docket than to figure out what was going on. I have accepted that a clear explanation might never emerge, but life goes on.

    I also realize that I only vaguely cared about accommodations before this experience. I was sympathetic towards those with disabilities, but I was very happily clueless about the need for and often pathetic lack of accommodations in the world.

    E

  8. I’ve been wanting to write about this for awhile. I’ve just had so little energy left for blogging after I do everything I have to do. In some ways it would be easier – people might understand – if I could say when fatigue is hobbling me that I have fibromyalgia, or MS, and it’s flaring today. I’ve been suspected of both but neither really fits, and I’m certainly not saying that I *want* to have either condition. But I also don’t like wondering if people think I’m just a malingerer.

    Also, I’d like to know the prognosis, which is tough without a diagnosis. Like Liz, I was glad to rule out ALS and a few other things. The process *was* worth it for me, but I had good luck with medical professionals.

    Great post, Sasha – lots to think about here.

  9. I was one of those lucky people who had a doc who would write for accomodations even though he didn’t know why exactly I needed them. My school accepted ‘chronic pain’ as enough of a reason to start giving me accomodations.

    As the diagnoses have come in, I’ve gotten more accomodations, some more difficult than others to accomodate. Fortunately, they’ve never recinded my older accomodations. I don’t know what I’d do otherwise.

    The road to getting my main diagnosis was rough, and it took me a year and a half from when I started getting really sick. I got two wrong diagnoses along the way, and I had to talk my GP into sending me to someone she didn’t believe I needed to see to get that diagnosis. I’ll admit it kinda hurt my trust in her that I was the one who figured out what specialist I needed and had to convince her to humor me.

    ~Kali

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