(Mis)diagnoses and Knowing Yourself


#1

Today I almost had a meltdown, the first in roughly 4 years, but there are a few differences this time.

  1. My family is passing through an extremely rough time
  2. My therapist is away (ironically right before tragedies)
  3. I received mixed signals from docs about my diagnosis(es)
  4. I have learned a lot working with professionals (but more so from family and friends)

In the past, when the diagnosis was completely off, I was self-destructive, and no one thought the story can ever end well. But that was not the plan, because I decided to go back to school, kick the destructive behaviours and not listen to the docs (those ones at least). It was hard, and still I did really well, until I (almost) did not. However, I was responsible about it all, so when I saw it coming, I went to the same docs (on my own) with the one condition: that they explore only other illnesses to justify my symptoms (now free of the effects of any medication including prescriptions for the “wrong” illness).

You would think it is insane, and how can someone with a mental illness see what docs are not able to see. But that is almost always the case. Because while it might be easy to confuse facts due to illness or as a side effect of pills, and for some this can even include confusing their own identity, I feel inclined to believe that you cannot confuse what your own body tells you (generally). Unless of course that is in itself the affliction you have, or you’ve been led to doubt yourself for so long that you must "un"shatter your confidence in spite of the well intentioned “helping you” noise.

Fast forward until my graduation (twice) and now looking forward to my career. This all under the new set of overlapping conditions, but not the old one that no longer made sense to anyone familiar with the case. I also found out that, although not without its price (due to ignorance or ill intent), when you seek the support of disability services and mental health departments, you can avoid going over the threshold when you see it coming. I did one degree in the 4 years (but stretched my summers in to be able to do it) and the second, (mainly due to a far less committed — even aggressive — services office) in 5 years instead of 2.

There were a lot more interesting events in the latter, including my younger brother calling from the hospital in a different city, after his school intervened because he was seemingly overwhelmed and then not attending classes (they did good, and he is doing a lot better now, his story to tell). In that same period, our family, initially from Egypt and now living in Canada, was already in the rollercoaster ride of our lives, hope seemed like a broken fluorescent tube, and sadly it too burnt out in the end — but who knows what the next revolution brings.

Because I was too invested in all of this, I shuffled my priorities a lot. I managed my symptoms, but sadly, one medication after the next, the depression was not budging, it was not going anywhere. And this time, after I graduated immediately, I burnt out, I took a train back home, and struggled for the next 4 years to get treatment and support.

I learned that docs will not know things, important things, like me pointing out that there is an “approved” medication out for a couple of years already which my own research makes me certain will actually work, and it did, just in time to avoid escalated treatment options for my medication resistant depression. Yes, okay, fair point, but it is not placebo, unless reality is all in our heads, then at that point, who cares. More importantly, they did not know about it at all, no one, no one, and they were at least 3 big shot doctors, they all were surprised it is out there and now gloat with big smiles at how happy they are prescribing to their now less desperate patients. Wow, okay, it might not be a placebo then (or far less than if it was just me).

I learned that docs will not have it right, at least not initially, but maybe never, and that is no excuse to not live a (relatively) full and happy life. About a week before my family’s latest string of tragedies (the one not talked about in bullet 1) my therapist informed me they were going away for a few months, and that they recommended me for a group (which I will finally start this very week) for folks with Asperger’s… Wow, what, wait a second, is that a diagnosis? What about the other stuff? Those questions did not start to hit me until I managed to pick up the pieces from the overlapping tragedies that unfold over the next few months, only after I was finally able to meet with my doc (ironically in the same offices, same suite even), who now offers a supporting second opinion.

Obviously, those questions took a few more minutes to actually surface, not right there in the office (in the allotted walk-in only slot), but right after I walked out and I was now maybe in some sort of shock or something (new). So no I don’t yet have an answer, but I am far more sold on the symptoms. But, I don’t care anymore, not about the label, not about what I am allowed to feel, all this does not help — what matters is knowing enough to know I am not taking the wrong pill and that I am not not taking a pill that I need to be in the right mind.

I learned that you really know yourself, not the label(s), not the right treatment(s), but obviously the wrong one(s). So, when I struggled 4 yrs ago, regardless of treatment(s), I knew I needed to stay active, I was not able to keep a job, but I loved coding, I did that since even before I was old enough to barely make friends, or able to talk to them (it’s relative, a few good ones are plenty more than most). I decided to drop my earned degrees, I stayed at home, I refreshed on my coding skills and sought help to try to get ready to finally be able to be out of the house long enough to get back out into the world. So far, in my own books, I have accomplished a lot with what seems to be absolutely hopeless for most, or at least initially, to myself and those around me. It has been a very long way, and I am still not there. But, knowing myself, I am getting there, one way or another, this all ends well.

People know themselves (ie who cares about labels)… profound words said to me by a friend I only met recently — while taking a part-time course — I did not realize it at the time, but those common words were not just said, they were said in the right time, in the right context, and with absolute sincerity. I noticed that (a bit later as usual) and forced myself to take notice again by reflecting on them (knowing yourself… ie who cares about labels).

Those words now pop into my head every time I am feeling overwhelmed, where normally I would’ve been freaking out on how to deal with those feelings: (dramatization encouraged here for effect)

“… is it a symptom of this one or that, let alone the best way to handle the actual feelings? am I ever going to get the right help? do I even need help? unless it is hopeless, and there is no help, at least not in my case…”

Instead, I think not of the fact that I am broken and need fixing (who isn’t), but only of the fact that I know it will pass (it always did before) and the only thing I can have power over is how I allow myself to be affected by it, and I know myself, so I can try to make this a little better than the last one.

So, no, I did not meltdown today. Today, I decided to accept the feeling, not simply call it uncontrollable, or a symptom, of the one of the many (and often) questionable label(s), it is a feeling, it happens… it was accepted, I was okay, I move on.

UPDATE: See, I just earned a badge :slight_smile:
UPDATE #2: See, I just earned another badge :slight_smile:


#2

It is a little discouraging to not see anyone respond to this, so I figure I need to write a new post.


#3

This covers a lot of ground in a lot of different areas. It sounds like you feel overwhelmed, because you don’t have the support you really need and you’re going through a tough time right now.

I guess I would say this: if you don’t feel like you are getting the right level of care, or the right type of care, why are you paying for it? The drugs, the doctors, the therapy… it just sounds like you’re frustrated.

It’s hard to get the right care, or sometimes even competent care. I could write a book on the horror stories I’ve experienced in that area. But the right doctors and therapists DO exist, and you have to be your own advocate. Be careful; if they’re telling you things that you don’t want to hear, then that might be a good instead of a bad thing.

The one thing that I notice about your post, and please forgive me as I am not trying to critique, is that it kind of rambles a bit. I used to do that too when I was on the wrong medicine. I could hardly hold a conversation. It’s hard to nail down what you’re trying to say, and some of this might be that you need to figure out what you need to tell your care team in advance. You have things inside that you want to say, all that’s left to do is figure out how to communicate it.

Also, remember that in the 15 mins - 1 hour that you have, you might only cover 20% of what you feel is important. But if you feel 20% better the next time, then better is good too! If I get 20% of my program done, it’s 20% more than what I started with, even if it’s not everything I want. I’d rather focus on that little bit and make it good then try to do the whole thing and end up with a buggy mess.

I hope that helps. It can be frustrating sometimes to reach out and spill your heart out to people like this and not get the support that you need. All I can say is that everyone is different. Trust me, the reason I haven’t been on the forums is because my own illness is hurting me too.


#4

I really appreciate your feedback, and sorry for the delay in replying.

I am slowly dealing with my miscommunication challenges which I only recognized lately. I guess being isolated at home for 4 years unwittingly afforded me the ability to not flex those muscles and revert. So I am slowly making this and other opportunities as a much needed practice (but not stressing about it).


#5

Then I’d say that’s a good plan. Definitely keep it up, and definitely keep working on getting the help you want, and need. Try to think through one part at a time, decide what you want to do, then work on that piece.