I am chronically ill and have been for some time. I don’t desire another diagnosis. At all. Ever. In fact, I demand the fates make some sort of rule that human beings can only have three complicated medical issues in one lifetime. I mean really, that seems quite sufficient.

It is not about the want to be diagnosed it is the matter of a need to be diagnosed.

Sometimes I think people and doctors believe we want to collect diagnoses like trading cards or something. We don’t. We have the problem already. It is there. What we Want is Answers so we can Act on the problem we have in order to improve our well-being and quality of life.

Title: Chronic Illness- When in an undiagnosed limbo we want answers and action
Image: looking down at a maze

The undiagnosed limbo

In my case, it is my vestibular disorder that remains mysteriously undiagnosed. Is it vestibular migraine? Meniere’s Disease? Both? Neither? I have no clue.

I do not know what to do, or not do, or do more of, or less of- to manage this. Is rest the answer? Or is a lot of rest making it worse? If rest isn’t the answer, what sort of things should I do? What shouldn’t I do?

And the fact is, being in this limbo sort of halts forward motion on any management of the condition you have. What if you do something that makes it worse? Much, much worse? So you’re in this stagnant state of waiting and waiting.

With vertigo I can’t say this waiting period has been great for my health. Too much rest has amplified my chronic pain, caused weight gain, and due to that weight gain caused sleep apnea. So there is a point when waiting is just not such a grand idea. Thus my desire to find some semblance of balance between vertigo, pain, and exercise to maintain some mobility and manage my pain.

But that is the point, waiting can lead to further problems. We cannot make an action plan- one way- or another- without knowledge.

Name the beast and I will fight it

We just need the diagnosis label, whatever that may be, to make some sort of action plan. Yes, that means medication or treatment plans. But that could also mean lifestyle changes as well. If we have no idea what we are dealing with we have no direction to point ourselves in to figure out ways to cope and manage it outside of medication.

But in no way does this me we desire another illness to add to the stack of chronic illnesses we have. We are already ill. That’s just a fact. We just want to know how to manage it the best we can. We can’t do that without knowledge. Knowledge is power. It gives us all the forward momentum we need. Gives us a plan of action.


When I first left the vestibular clinic with my strange test results I was given an undiagnosable response from them. This is a pretty big fear for anyone with horrible symptoms they have no idea how to manage. It is basically saying they don’t know so then You have no idea what to do Either. In my case, it was just said that I had too many medical conditions that could have caused my vertigo and they couldn’t determine the actual cause to diagnose it at that time. And that meant I had literally no treatment plan. No action plan. No future way to manage vertigo, dizziness or balance issues. No clue at all, really. I was at a loss at what I was supposed to Do.

That also means I am sort of hesitant to believe my upcoming appointment will lead to a diagnosis or treatment plan. I sure as hell hope it does. But I am not certain that it will.

If it doesn’t, I will be left winging it because at some point a person just has to try and figure out something on their own if they can’t find any other answers. And that will mean a whole lot of trial and error. Not the method I prefer when it comes it my health. But, trust me, I will wing it if I have to. Trying something is better than nothing at all, if it comes down to it. Quality of life means a whole damn lot and left in this limbo state forever would tank that if I didn’t try Something. I would just prefer an actual direction, an actual action plan, an actual treatment. But we can’t always get what we want.

We want answers and action

Yes, we want that defined diagnosis. We want it so we can know our options. Know the potential treatments. Make informed choices in regards to our treatment. Choose lifestyle changes that will move us forward. Choose medication that best suits us and our needs at that time.

We do not want to be left in some stagnant limbo forever. Waiting for answers. Waiting for appointments. Waiting and waiting and never getting anywhere. Where we can make no forward progress because we have no information to move on.

But it is also true that we may never get the answers or direction that we need. That can be the case when we are complicated patients. We have multiple illnesses. And it can be difficult to determine the cause or diagnosis or something else given our current illnesses. I get that. That doesn’t mean we have to accept that. Doesn’t mean we can’t get second or third opinions. It also doesn’t mean we can’t begin to try things on our own that may help us because we have no other option but to try things on our own. That is also true. One way or the other, I need forward momentum.

Undiagnosed: that limbo state
Things I learned after being diagnosed with migraine
10 things I would tell the newly diagnosed

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One thought on “Chronic illness: When in an undiagnosed limbo we want answers and action

  1. I totally resonate with your post here. Going without a diagnosis when you obviously feel sick can be a huge wrench in your action plan. It can be extremely hard to be patient in these types of situations (I know I wasn’t when I was waiting for my diagnosis), but it is key. Thank you for sharing.

    Liked by 1 person

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