To Get or to Not Get That Formal Diagnosis


I just watched a video about mental illness and the stigma people with mental illness face and man did the comments make me sad. It’s funny how people with no understanding of mental illnesses think they can tell those of us who have them what we should or should not do about them. As such, I think it’s about time to offer up some explanation in order to allow those who are curious what getting diagnosed is actually like.

I’ve talked about a lot of this before, so I’m sure much of it won’t be news to many of you, but this is my story:

I was always an anxious child. I was also always very hyper-active and particular. My parents never thought anything of my oddities, which I assume is largely because they are at least in part genetic. Right from the beginning, I would freak out if my parents tried to put me on grass. They didn’t know why, but to this day I hate walking on grass in bare feet. To me, grass feels like little needles stabbing into my skin. It’s also itchy. But my parents didn’t know that. As I grew older, I became better at vocalizing what was bothering me, but my parents always just assumed that it was regular child behavious. As a young child I would freak out if my clothes weren’t skin tight. I disliked wearing anything baggy, so I usually wore leggings and a slightly too small t-shirt. I also hated hats and needed to wear socks at all times. On top of that, I refused to eat my food if anything was touching and I needed my bath water to be the perfect temperature. I’m sure that all sounds like typical childhood behaviour to many of you, but the degree to which I took issue with things is what makes it odd. I would have extreme temper tantrums. I would rip my clothes off if they didn’t feel perfect. I would throw myself out of the tub if the water wasn’t right. To me, that stuff was incredibly distressing, and I couldn’t explain why. Now I know it’s related to my sensory processing. To me, loose cloths and hot water were painful. My food touching caused too many flavours to exist in my mouth at one time. It was all just too much for my brain to handle. Some things changed, or became more obvious, as I entered school. The main thing my parents noticed was my unwillingness to use the bathroom. I had always needed my parents to tell me what to expect whenever something new was going to occur. I wanted to know where we were going, what we were doing (in minute detail), how long we would be there, how many people were going to be there, and any other detail I deemed relevant. If I was given the details, I was fine. I would be nervous at first, but nothing that couldn’t be managed. However, without the specific details, I would be an absolute wreck. I would cry, I would refuse to do anything, and I would be absolutely miserable. School brought that out in a very obvious way. For one thing, my parents weren’t there. I actually never had any separation issues at any point. I didn’t care if my parents stayed with me or left, even as an infant and toddler, so I don’t think my parents expected any issues with me being in school. But school goes on for a long time. I was nervous about using the public bathroom, and even more nervous about asking an adult, especially one that wasn’t my usual teacher. As such, I had a lot of accidents. A few times my teacher even found me crying in the bathroom. I was also very quiet at school. I certainly wasn’t like that at home. I would constantly talk to myself, I made up adventures, and I loved running around and getting covered in mud. If we went to the park, my parents would have to tell me to stop doing things, like running down the slide, because I would constantly copy the things the older kids were doing. I was definitely the kind of kid that would tell my parents “I can do it,” and I usually did it. So my lack of interest in talking in class was a bit of an issue. I made friends easily enough, and I talked to them, but I didn’t like being the center of attention. In fact, I preferred to be ignored if I could. But my teachers weren’t concerned. I was a good student. I got good grades, I wasn’t disruptive, and I was friendly. I also seemed fairly unfazed by a lot. In kindergarten, a kid coloured on me and I didn’t care. My mom was fairly confused by that. But I probably would have reacted differently if he had touched me with his hands.

All of the issues I had were more confusing to my parents than concerning. They couldn’t understand I didn’t just speak up. But just the thought of speaking up was distressful to me. I think they thought it was just something I’d grow out of. After all, I did grow out of a lot of things. The first thing being my skin tight clothes. Around age 8, I started to prefer my clothes baggy. I began to find tight clothes itchy, so baggy clothes became far more comfortable. At first they had to be tight around my waist, but they they just needed to fit comfortably. That is still how I prefer my clothes today. And it is still very much a sensory thing. But, to my parents, it was just me wearing normal clothes, and then it was me being a tomboy. I then started to be less picky about food. I became more okay with certain foods touching. Now I actually like my food mixed together. That, again, is actually a sensory issue. I discovered that I could make unpleasant foods less unpleasant if I mixed them with foods that I liked. Basically, I struggled with a lot of things that most kids struggle with, but to a greater degree.

Because I wasn’t struggling with things that seem odd, my parents never thought that my struggles were a sign of anything deeper. As a result, neither did I. But assuming that a child must appear odd before something can be wrong is quite a problematic belief. People dismiss ADHD simply because all children get hyper and struggle with paying attention some of the time, but they fail to recognize the degree to which the child struggles as a symptom. Despite knowing 3 boys with various types of ADHD, nobody thought I might have it. It wasn’t that I didn’t have as much energy as them, because I had far more energy than 2 of them and as much as one of them. It’s not that they were more easily distracted than me, or even more disruptive. In fact, I got in trouble fairly regularly for daydreaming or talking outside of my turn, just not usually at school. But I was read as a girl. It didn’t matter how similar I was to those boys, because girls just don’t have ADHD. This meant that my struggles went ignored and, when they were noticed, I was asked things like “why can’t you just do x instead.” The assumption that I could just change who I am has left a bitter taste in my mouth. If people had looked at my symptoms without making assumptions, perhaps I would have been tested earlier on. If I had been tested earlier on, maybe I would have gotten the help I needed to be more successful, and maybe I wouldn’t be struggling so much today.

But I didn’t get my formal diagnosis way back then. And there is a part of me that wonders if it would have done as much good as I think it would. It certainly would have legitimized my struggles to my teachers and parents. But then there are plenty of people out there who are convinced that my issues simply don’t exist. And those people absolutely refuse to be convinced otherwise. That, plus I was a happy child. I was allowed to run around and get dirty, I spent a lot of time outside, I did fairly well in school, and I had friends. I had a handful of struggles that I wish I had never had to deal with on my own,I had more stress than a normal child should have, but I was more happy than not. I have no idea what effect being diagnosed as a child would have helped my stress or my happiness level. So I’m not sure how upset I should be that my anxiety wasn’t caught until I was 13.

As I said above, I was an anxious child from the beginning. But, as is often the case, it took a particular trigger and my anxiety going over the edge before it got the attention of my mom. My parents got divorced when I was 12. That didn’t actually particularly surprise me. We moved into a new house when I was about 7, and I had thought that our family was happy at that time. But it didn’t take long before I noticed that that wasn’t the case. My parents would fight a lot. At first it was about money, then it was about one doing more than the other, then my dad would get mad because my mom spent all her time at work, and then if became about where my dad had been all weekend. Being a kid, I didn’t think too hard about the content. I was more concerned about getting myself and my brother away from the conflict. We spent a lot of time in my room creating noise to cover up the fighting. But then things got worse. I had had a couple of friends whose parents had gotten divorced, so I knew the signs, and I watched for them. So when my parents stopped talking, I asked my mom if they were going to get divorced. At the time, she said no. I think she truly believed that they wouldn’t get divorced. But I didn’t believe her. It started out that my mom would be at work until late, so my dad was our primary care giver, but he spent all day on the computer in chat rooms. He used to get mad when my brother and I would interrupt him, and he would often get me to order pizza for supper. This created more stress for me than the fighting. It meant that, at age 8, I became responsible for caring for my brother. It also meant that my parents were now unpredictable. I didn’t know what would make them angry, so I avoided them. When my dad finally left, it was actually a relief. I thought that it would bring peace. But it didn’t. I was 12 when my dad left, and my brother was 10, so we weren’t completely naive to the situation. That said, I blamed my mom because I thought she chased my dad away. My brother, however, blamed my dad. He wanted my dad to come home so our family would be whole again. I knew that that would never happen. We reacted in our own ways to the situation. I thought that my dad leaving would bring my mom home, but it didn’t. At first she would work late, come home to make us a quick supper, then leave to go drink with her friends. I often went to bed before she got home and woke up after she had left. That was fine for a little while, but it wore on me. When she did come home early, it was because my brother had gotten in trouble at school and there was once again fighting in the house. Then my mom started dating without telling us. Suddenly we never knew where our mother was. When he found out, my brother felt understandably betrayed, and he started to get in even more trouble at school. I, in the meantime, was knee deep in depression without knowing it. My stomach hurt constantly, I got a lot of headaches, and I had no interest in doing anything. I started to quit all my extracurricular activities, and I had my mom call my school to tell them I was sick. She thought I was just skipping school, but she called in anyway. When I was 13, she finally took me to a doctor. That was the first time I heard the word “anxiety.” But, despite the doctor’s assessment, my mom didn’t actually believe me. She still thought I was making it all up.

That also wasn’t a formal diagnosis. My doctor was a family doctor and had no training in mental health issues, so she would have had to send me to a psychologist to get me properly diagnosed. That and my mom’s own unwillingness to believe me meant that I ended up having to self-diagnose to begin helping myself. Being a 13 year old, that obviously didn’t happen right away. It wasn’t until I was a 19 year old college student that I could self-diagnose. At around 17-18 I began to find my own triggers and deal with them. I had a job at the time and couldn’t afford to have panic attacks constantly (mostly I was just worried about being perceived as crazy). But at 19 I learned about Generalized Anxiety Disorder, along with a number of other mental health issues, in an introductory psychology class. At that point, I stated to look into GAD on my own. I discovered that my symptoms fit GAD quite well, and I started to say that that is what I had. I still hadn’t been properly diagnosed, and I was careful to clarify that, but I also knew my own brain well enough to say that that was the most likely. That was when I was able to create my own coping mechanisms to better function as a student, at work, and as a human in general. For this reason, I think it is often healthy to self-diagnose. You can’t just go to the doctor and get diagnosed, and I think, with enough research, we know enough about our brains to get a good handle on what will and won’t help us. Plus many people don’t get properly diagnosed until they self-diagnose, and, if they are wrong, that will often lead to the actual issue getting diagnoses by a professional. After all, I wouldn’t have gotten myself properly diagnosed if I didn’t think I had a mental illness. If I just thought I was an anxious person, I would have continued to struggle in silence. As it is, when I started having panic attacks a few years ago, I already knew what they were and I knew I should get help. At first I tried talk therapy. That worked for a bit, but I eventually needed to get myself on meds. That meant talking to a doctor that specialized in mental health. Luckily I was a student, so I had easy access to such a doctor. That doctor agreed that I likely had GAD, though they still weren’t qualified to properly diagnose me. You don’t, however, need the proper diagnosis to get put on meds. People react differently to different meds anyway, so it’s very much a process of trial and error. I was lucky. The first meds we tried worked. I did eventually need a stronger dose, but most people spend a lot of time finding the right drug, then spend as much or more time finding the right dose, so I got off easy. If anxiety was my only issue, getting a proper diagnosis would have been pointless. However, I did start to notice that the meds got rid of some of my symptoms, but not all of them. That suggested that I wasn’t just struggling with anxiety. At first I figured it was autism. I had already been told that I probably had autism, but I had never been diagnosed. Then somebody suggested that I might have ADHD. Looking into it, it fit. So I decided to take the information to my doctor. As I said, my doctor couldn’t give me a proper diagnosis for GAD, and it was the same for autism and ADHD, but she could send me down the right track. She sent me to a therapist who looked at my symptoms. He wasn’t convinced I had autism, and thought it was Social Anxiety Disorder (which is fairly common when a person already struggles with a mental illness or developmental disability), but he did think I had ADHD. He was also unable to give me a proper diagnosis, but he thought I should get one, so he sent me to the people who could diagnose me. I’m sure by now you’ve noticed that the “doctor looks at patient and says they have x, so clearly everybody is just being overly diagnosed” is quite naive compared to the true complexity. But it gets even more complex than that.

When I was sent to get proper testing, I was told that it would take at least 2 months to get my results. First I had to go through 48 hours, over the course of three sessions, of testing. I spent about 2 hours being interviewed. This is the part that most people think is all that happens. Basically, I was asked about my family, my childhood, and why I thought I needed to be there. Since I can’t remember certain things, my mom helped by answering some of the questions via text. Luckily I had the questions (sort of) ahead of time, so I was able to ask her before the interview. The rest of the 48 hours was actual tests. There is no blood test or brain scan for ADHD or autism, but there are tests. One of the tests involved recognition of human faces. I didn’t realize how bad I was at recognizing people I’d seen before until that test. There was also a test for reading faces and hearing emotion. Turns out I’m pretty good at hearing emotion in the spoken word, and I have no issue with sarcasm, but I can’t read emotion in body language. That means I pretty much have to rely on what you say to understand your emotional state. My autism has severely affected my non-verbal communication skills, even though my verbal communication skills are on par with the average person’s. I also discovered that my ears tell me far more than my eyes. I can follow instructions by sound far better than I can follow instructions by sight. I can remember abstract things that I can picture better than I can remember anything related to humans. And I can recreate things I saw once easily. My intelligence is above average, but I struggle with human interaction and staying focused. I actually found that going through the tests told me a lot about myself and would have been helpful even if I hadn’t gotten my diagnoses out of them. For that reason, I kind of wish those tests were given to people as they went through school and entered the job market. But I did get my diagnoses. At the end of the testing (actually about three months later), I learned that I did in fact have both ADHD and Autism Spectrum Disorder, and I finally got a proper diagnosis for my GAD. Those diagnoses will help me out in the future. Because getting diagnosed has been beneficial to me, I am totally willing to support anyone who feels the need to undergo the process themself. Just don’t expect it to be quick and easy (or cheap if you aren’t insured). But I also understand why many wouldn’t bother. After all, it’s not necessary if talk therapy and meds are enough (or even if just talk therapy is enough). And we do generally know our brains well enough to get the help we need if we are willing to ask (though asking is usually the hardest part). So I see nothing wrong with using self-diagnosis as a means to get that help. Part of my willingness to support self-diagnosis is because of Withteeth. He had never been properly diagnosed, but we both know what he has. For him, getting the diagnoses just seems pointless at this point in time. But I’ll let him tell his own story at a later date should he wish to do so.

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4 responses to “To Get or to Not Get That Formal Diagnosis

  • erinchafig

    I agree for adults. I do encourage parents who think their child might have (whatever) to get the testing done. Having a diagnosis makes it possible to get accommodations in school. And getting a child diagnosed is usually much easier and less expensive, though not always.

    Like

  • clubschadenfreude

    I’d say always get that formal diagnosis. It can protect you, at least here in the US, via the Americans with Disability Act and the FMLA.

    Like

  • patc44

    Thank you for sharing your story. I work in a CAMHS in the uk. (child adolescent mental health service) as an office manager. I read lots of info about the young people who come to see the clinicians. It does take a long time to get a diagnosis, it is emotionally painful for children and parents or carers. But I hope in the long run will help explain why they/you do what you do and if its possible to overcome some of the issues. I appreciate things dont just ‘get better’ with a diagnosis either. We all have issues to overcome one way or another.
    I love reading your work – you are very open and honest…keep it coming. Im glad you found the strength to come back.

    Like

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