Why the Fight for a Diagnosis Matters

I came across this post on The Mighty and I couldn’t help but feel a bit of similarity between my experiences and the author’s. Although she has a condition with more obvious physical symptoms than mental disorders usually do, I still found myself relating to parts of her experience. For example, being told “it’s all in your head” and feeling like you’re never going to get a proper answer. So, I thought it was worth sharing here.

This woman’s story can ring true for a lot of illnesses, including mental illnesses, and I certainly don’t want to sound like I’m diminishing either of them. I can really only speak from my own experiences, so if you’re reading this, I recommend you read Stefani Shea’s post on The Mighty as well. Here’s the link again, in case you skipped past it the first time: http://themighty.com/2016/01/why-the-fight-for-a-diagnosis-matters

Here’s some of my experience that I was reminded of while reading that article.

I went through various tests for different symptoms a few different times in my life, with no real answer as to what was causing them.

When I was in grade 8 or 9 (2001-03), I had all kinds of tests to determine why I was having severe stomach pain. Pain that was worse than my menstrual cramps, which had also been severe enough for a doctor to write me a prescription for a stronger pain medication that somehow did absolutely nothing. At one point, even though he didn’t think this was the case, my doctor had mentioned cancer as a possibility. Somewhere along the way, someone had mentioned that Advil is hard on the stomach, and I had been taking a lot of it for my menstrual cramps, so I started trying other pain relievers. But after all the tests failed to explain my symptoms, the doctor said that it was probably all in my head, and left it at that. Never to be discussed again.

Eventually the symptoms decreased in severity and frequency, and after a few years they seemed to have stopped entirely. It came back on occasion, but never quite like they had been.

During my last year of college (2010/11) I was experiencing chronic headaches, sinus pain, severe menstrual cramps again (they had gotten less severe for a couple years but had gotten worse again). The doctor on campus ordered a sinus X-ray and some blood work, and gave me about 30 sample packs of Advil and Aleve for my cramps and headaches. She came to the conclusion that the headaches were due to extremely low iron, which normally isn’t a symptom but after starting prescription she gave me for iron pills, the headaches improved slightly. No real explanation for the cramps being so severe, which I was expecting. All I really expected for that was a recommendation for something stronger than the extra strength Tylenol I’d been taking since I stopped taking Advil.

Later that same year, I began experiencing heart palpitations. The campus doctor had one of the nurses in the office do an EKG (electrocardiogram, which checks for problems with the electrical activity of your heart) which of course turned up nothing because it is a very short test, and when the problem isn’t happening right at that particular moment, there are no results. So she ordered a 24 hour Holter monitor.

The results showed a few points where I did have palpitations, accurately when I pressed the button to indicate that I felt like I was experiencing it, which means I was definitely not making it up! But since she couldn’t come up with a reasonable explanation, she said it was probably just stress and left it at that. No follow-up. Nothing. No other thoughts or questions.

You’d think problems with the heart would be cause for concern, since you kind of need your heart to, you know, live, but apparently it’s not that big of a deal. I knew I was stressed during that period of time with school, in fact I was extremely overwhelmed, so much so that I had actually quit my part-time job right around the time all this was happening, so I accepted her response, but it had always left me a little unsettled.

After I finished college and was settled in my job in Medicine Hat, the heart palpitations began happening less frequently and eventually almost never. They would occasionally start up again during times of increased stress, which caused me to believe maybe she had been right about it being caused by stress, but fast less frequent than before, and generally didn’t go on for very long.

It was because of experiences like this that I began thinking that doctors were useless. If they couldn’t give me an answer and they’re just going to make me feel like I’m making it up, why even bother.

Those certainly weren’t the only unexplained symptoms I experienced, but they were the only ones that were severe enough for me to feel I might actually get an explanation for.

It wasn’t until late in 2014, after hitting my mental rock bottom and was diagnosed with an anxiety disorder that I finally had an explanation for all those symptoms. All those years of unexplained physical symptoms and I finally had a reason. I mentioned to my doctor at the time, why it took me so long to ask for this kind of help. Having been told so many times that it was all in my head or there was nothing wrong had caused me to believe that what I was going through at that point in my life, again, all in my head. I was crazy. He told me that those symptoms were more than likely my body trying to tell me something was wrong, but they were misinterpreted by everyone. Even though he was rushed (he was at least an hour behind schedule that day, because that’s how long it was after my scheduled appointment that I actually saw him) did take the time to tell me that it wasn’t all in my head (aside from the fact that technically it is, but let’s not worry about semantics right now), and there was actually an explanation for the way I felt and that I wasn’t crazy.

Although he may not have handled the whole thing in the most ideal way, I did finally feel some validation. Because my doctor didn’t fully explain the diagnosis to me, and I’m one of those people who Googles everything I don’t understand, rather than asking questions (which I later realized this is due to the fact I have social anxiety) when I fear they will make me look/sound stupid, I began spending countless hours on the internet reading about every mental disorder I came across, desperately seeking a full explanation for it all.

It was all right there! Suddenly my entire life made sense. The irrational fears, avoiding certain situations, and the unexplained physical symptoms.

I couldn’t believe that all these years, the explanation was right there but nobody had put two and two together. During my research I realized that the signs were there even when I was quite young, yet no one saw it. I certainly couldn’t have figured it out myself, I was a kid.

So why couldn’t the adults in my life see it. Why couldn’t the doctors, the people who are supposed to see it, why did they not see it? Why, when nothing else could explain it, did they not even consider it?

Those are answers I’ll never get, but I do at least have the answer I was ultimately looking for. Although, my diagnosis has changed a bit since 2014, not to anyone’s surprise of course, since mental illnesses are not exactly cut and dry or black and white. It really takes getting to know the patient to actually provide a solid diagnosis, but even then, it isn’t necessarily 100% correct. Plus, so many mental disorders have a lot of overlapping symptoms, making it difficult to be confident in one diagnosis.

The not so physical symptoms, the ones I never understood, the ones that are actually, technically, in my head and are harder for others to see, have led to a few different diagnoses:

  • Generalized Anxiety Disorder – November 2014, by my previous GP
  • Social Anxiety Disorder/Social Phobia – August 2015, by a psychiatrist
  • Chronic Depression – Sort of December 2014, but more officially a few months later
    • I have what is classified as “mild” depression, previously called Dysthymia (simple definition: persistent mild depression) in the DSM-IV, but was replaced by Persistent Depressive Disorder in the DSM-V. PDD is sort of an umbrella term encompassing both chronic major depressive disorder or “clinical depression” as well as the previous dysthymic disorder.
    • I do not have MDD, however I do believe I have had at least one major depressive episode, but never sought help, because of my fear of being told there was nothing wrong with me.
    • Originally this was added to my GAD diagnosis as “depressive features” by my previous doctor, but my current doctor has since acknowledged it separately from my anxiety.
    • The psychiatrist who diagnosed me with social anxiety said that I was not depressed, but I strongly believe he was wrong, due to the fact that he had only just met me and had only talked to me for about 20 minutes. Whereas my regular doctor has spent a lot more time with me as well as my social worker, and both have fully acknowledge my depression.
  • Obsessive Compulsive Disorder traits – December 2015
    • This one is not quite a actual diagnosis at this point since my doctor and I only talked about one particular symptom, but it is a fairly prominent symptom, commonly seen in OCD: fear of contamination. I’m not sure that it will go any further than that, however I am certain I have other symptoms.
  • Dermatillomania and Trichotillomania – unofficially official…? Is that a thing?
    • These two have not technically been diagnosed, however they are slightly more obvious and easier to see because the symptoms do show physically but are actually mental disorders classified as Body-Focused Repetitive Behaviours (BFRBs), but were previously classified as being ICDs (Impulse Control Disorders), and considered very similar to OCD.
    • My doctor did mention tricholillomania without me mentioning it by name, when I told him how my stress levels had caused me to pull out about 75% of my eyelashes. I also told him about the skin picking but he did not mention dermatillomania/excoriation disorder. However, I am 99.99999% sure that I meet the diagnostic criteria for derma, and am probably at least close to meeting the trich diagnostic criteria. Either way, it’s a problem.

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