Following on from my posts about why I sought an assessment for dyspraxia and how the process went for me, in this post I’ll share the immediate and longer-term ways in which being diagnosed has had an impact on my life over the past 17 months.
How did you feel when you were told you had been diagnosed with dyspraxia?
At first, just so relieved. I wasn’t lazy, or stupid – I was dyspraxic. I wasn’t making a fuss about nothing – these were genuine difficulties. It was like those same fireworks that went off in my brain when I first learned about dyspraxia were going off all over again.
As I went home from my follow-up appointment, the other emotions started to hit. Sadness as it was now in writing that I was bad at certain things in a way that had never really been fully acknowledged before. Frustration that it hadn’t been picked up before, that my university hadn’t been able to help 2 years earlier when I’d asked. Worry about how my friends and family would react. Excitement that I might be able to get some support.
None of that could diminish my relief, though.
Over the next few months, as I started to process gaining a diagnosis, all of these emotions and more would come up. Frustration that people did not always believe me, or that they did not listen when I told them I was dyspraxic. Feeling overwhelmed by all the people my university advised me to tell – all my placement supervisors, and my research supervisor, and my personal tutor – and dealing with their varied reactions.
If I could go back, I’d have listened to my instincts more and not told people so quickly. I needed time to come to terms with it myself, first; I wasn’t ready to say ‘this is what it is, this is how it affects me, this is what I do to manage that, if you do this it will help – oh and also it gives me these strengths, too.’ It probably took me the best part of a year to process and come to terms with it enough to start wanting to talk about it.
So there was an adjustment period, then, as you processed it?
Yes, definitely. Even though I’d thought about it a lot, having an official diagnosis still felt huge.
What do you think has been the biggest benefit of having been diagnosed?
It’s helped me be kinder to myself – to show myself the same compassion that I hope I show others. Instead of beating myself up, I remind myself that something being challenging is okay, that not being good at something is okay – and that it’s okay to continue working at it, but it’s also okay to get help or decide to prioritise something else. Part of compassion is recognising that I can’t do everything, and choosing to focus on the things that offer the best value for my energy/effort! This means I’m better at pacing myself and accepting that sometimes it’s worth a big effort to do something, but sometimes it’s not.
I no longer feel like I’m doing something ‘bad’ when I don’t have energy, so it’s not even that I forgive myself for not being good at or taking up everything I could. I’m much more accepting of who I am. Ironically, that’s also meant I’m even more determined when I do decide to do something!
It sounds like being diagnosed changed your relationship with yourself. Did your diagnosis also change your relationships with others?
I think being more open about it has helped others understand a bit more. It’s helped me be more patient when people struggle with things like organisation – things I used to beat myself up for, I would also be critical of others for, but now I’m much less critical and more focused on understanding.
It hasn’t all been positive. I’ve had some people who have said they don’t think I’m really dyspraxic, because of stereotyped ideas they have about dyspraxia. That’s been really hard for me – I hoped being diagnosed would mean I wouldn’t have to keep proving it anymore! But, having said that, some people have been really supportive and amazing, and some of my relationships are stronger than before.
What about at uni? Did it help there?
Not much so far. Partly that’s because I didn’t quite get around to applying for Disabled Students Allowance until quite recently. Partly I wasn’t really ready to explain how dyspraxia affects me to my research supervisor, so it ended up in a kind of “oh so you just need to be more organised?” kind of scenario. But I’m hoping now that I understand my dyspraxia and bit more, and especially if I do get anything from DSA, that those things will help. It’s still a work in progress, but understanding my process and how I work is valuable even if it hasn’t yet shown objective benefits. My impression is that it’s common for people to find a diagnosis does help them at university as they can access more support.
What about at work – did you get any adjustments?
Not explicitly. It’s a bit complicated because I’m on a casual hours contract, so although I think I’m still entitled to reasonable adjustments, I don’t know how you decide what’s reasonable when the person might not do any further work for the organisation in a week or two’s time!
There are some things that I’m learning I do as coping strategies – for example reading supervisees’ notes in advance of supervision so that I can process them at my own pace more easily – and there are other coping strategies I don’t have as much access to as I used to (like getting meeting agendas in advance, and my own corner desk) that I’m learning are actually really helpful for me. I’m confident my employer would at least consider adjustments if I asked, but at the moment the most helpful things for me are often things I do myself in terms of how I plan my diary etc.
What about day-to-day tasks, things like cooking and cleaning?
Feeling like it’s okay to struggle with these has been a huge help in and of itself! Then there’s being able to draw on the knowledge and resources of the dyspraxia community – tips from individuals, from the Dyspraxia Foundation conferences, from the Dyspraxic Doctor, from all the different people posting on Twitter. My favourite tip so far is pouring drinks on trays to contain spills!
Did being diagnosed have any impact on your health and wellbeing?
Psychologically, because I’m much more accepting and understanding of myself and my needs (and I can call them needs now without worrying about whether they are really needs), that’s helped me feel less stressed about a lot of things. Sometimes it’s been hard, too – there was a point where I was thinking that slow processing speeds might suggest I shouldn’t be working in fast-paced mental health settings where sometimes you’re dealing with a crisis very unexpectedly. I’ve had to remind myself that I’ve been handling those kinds of situations for 9 years just fine, but for a while I was really questioning if I could still go in that direction. I’m more confident now and some clients have even said the time I take over listening and replying has helped them to really take time to listen to themselves, too.
My physical health has benefitted, as well. I’m less harsh on myself around exercise, so I’m walking a lot more and at a speedier pace. I’m enjoying that! I’ll be talking more about it in a separate post tomorrow because it’s a huge achievement for me. And just giving myself permission to acknowledge it as an achievement has in turn been really powerful.
Have there been any drawbacks to having been diagnosed?
As much as some of the things that have come out of being diagnosed have been difficult and there has been a process of coming to terms with it, I don’t think I would say I’ve experienced drawbacks of having been diagnosed. Partly that’s because I don’t feel I’ve experienced discrimination, which I know is something that other people have faced. And partly I think it’s because lots of the more difficult aspects, like other people’s reactions, are things that you have to deal with even if you aren’t diagnosed – only, instead of “you can’t really be dyspraxic” it’s comments on how often you fall over, or drop things. So for me I don’t think there have been any specific drawbacks.
Is there anything you expected would change as a result of being diagnosed, that actually didn’t change?
I thought things at uni and work would change, that there’d be more support – but equally I think the main reason those things haven’t changed is because I haven’t pushed for them to.
Knowing what you know now, would you still decide to pursue a diagnosis?
Definitely! I’m really glad that I got assessed and that I have the opportunity to learn more about myself and how I cope in the world. It’s also really helped me to feel validated and to stop blaming myself when I feel like I’m working hard for slow or minimal progress.
Thank you for reading, I hope my experience has or can help you in some way. I have one more blog post coming tomorrow, focusing more on how being diagnosed helped me walk 1000 miles this year, which is one of my proudest achievements to date.