Acquiring a diagnosis

I recently acquired a diagnosis for a lifelong physical impairment. It has me reflecting on how I have previously dealt with the emotional and psychological elements of being diagnosed. Obviously, this differs greatly depending on how drawn out the process is, how medicalised it is, your own predisposition towards the medical establishment, how much you know about the impairment before diagnosis, whether it is expected or unexpected and the extent of your internalised disablism in the area, amongst other things. Before I write a post on things that could be helpful when you’re going through the process of getting a diagnosis or when you’re newly diagnosed, I thought I’d write a little about my story.

Since 2010 I’ve received a series of medical diagnoses. Some of these have required surgery, others have been labels applied to longstanding impairments that I’d previously not needed a label for. One way or another they have all been somewhat life-changing. For me, the process of acquiring a diagnosis has frequently been stressful and has brought me face to face with internalised disablism. When I was diagnosed with a tumour that required surgery (I called it Horace), I had a range of quite overwhelming emotions. There was some relief related to having my symptoms explained, but I was scared about surgery and the possibility that it would be malignant. I read everything I could find on ovarian cysts and they dominated many of my conversations. I found it hard to create space in my life for anything other than Horace. I knew I needed to, so I worked at it. I created a games group for queer people. I reached out to friends that I’d not talked to in a while. I even went on some dates. I also threw myself into work. I picked up some exciting projects and allowed myself to get thoroughly absorbed. I found lots of ways of creating meaning in my life, so that Horace was one element of it, but not the only element. I asked for support from a wide range of people and ended relationships that were difficult to manage while I was unwell and had very little emotional energy to give. I loved the support that my queer family gave me – even people I hardly knew. I was sad that others couldn’t support me in the way that I’d hoped. Losing friends and needing more distance in relationships that weren’t supportive when I needed them to be was hard going. Accepting support from willing people that I wasn’t as close to was also an important and growthful experience. One that I’m very grateful for.

More recently I have acquired a diagnosis of developmental impairments – dyspraxia and dyslexia. Unlike Horace or even my asthma, dyspraxia feels like something I am rather than something I have. It is part of me, and I wouldn’t be myself without it. Nevertheless, the diagnosis came with some challenges. To get these labels, I had to fill in questionnaires that were all focused on the things I was really crappy at, and then do a series of tests. I was good at some of the tests, but others were incredibly hard for me. I thought I’d done really well at one of them – rapidly naming things – but the outcome was that I was in the lowest decile. Somehow the fact that I thought I’d done well made that test feel much worse than the test asking me to trace around shapes – something I’ve always been terrible at – where I knew I’d done badly. Overall, I came out of the diagnostic process feeling a confused mix of emotions. On one hand, I was happy that the diagnosis would give me access to support and that it explained some of my quirks (clumsiness, difficulty with names, etc). On the other hand, I felt like someone had just gone through my cognitive profile with a laser focus on just the things I’m bad at. It was depressing and made me feel quite insecure. Naturally, throughout the process, I read absolutely everything that I could about dyspraxia and bored more than one friend talking about it. But I also remembered what had happened with Horace. I knew in a much more embodied way that I needed to make sure that I created space in my life for lots of things that weren’t the diagnosis. Fortunately (maybe?) there was a lot going on in my life at the time. It wasn’t really a big problem for me to focus on other meaningful things. It also turns out that practice makes perfect (or at least leads to improvement). I was much better at asking for help and accepting it when it was offered. I gave myself much more space to explore the meaning of this impairment for me. The best thing to come from it is that I’ve stopped my self-criticism around not being able to remember people’s names. It’s very clear, based on my cognitive profile, that it is something I’m poorly equipped to do.

On reflection, acquiring a diagnosis has been a time of stress, self-discovery, and growth for me. I have frequently found it emotionally and psychologically challenging, predominantly the contact with health professionals rather than the actual impairment. At the same time, it has offered me opportunities to evaluate my connections and to make conscious choices about how to live a life that is meaningful to me. My experience is my own, but I think there are a few things that I’ve found useful on this journey that others might too.  They are:

1) I need to create meaningful things to focus on outside the impairment or health issue

2) I need to re-evaluate my relationships based on how supportive they can be when I’m struggling and have little emotional energy – and medicalised processes zap my emotional energy.

3) I need to be prepared to ask for and accept support, sometimes from people who are not my nearest and dearest.

4) I need to be kind to myself and prioritise self-care.

5) I need to give my emotions space and allow myself to feel whatever I do in the moment.

I will explore these in more detail in the next post on being kind to ourselves.

I’m really invested in activism, but I haven’t ever found it something I could do close to getting a diagnosis.  For me, that comes after I’ve taken care of myself and dealt with the immediate situation. For my activism to be energising and community building I need it to be compatible with kindness to myself. For me, that is a kind of activism in and of itself.