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Disability History Month: The assumptions of ADHD and other invisible disabilities

15 December 2021

14 mins

Image courtesy of Getty

At first glance, I would appear to be a healthy woman in the prime of her life (yes, I am taking back our 30s as the prime of our short and fleeting lives). Yet for years I have dealt with many hidden disabilities that have affected both my relationships and my life in general.  

When I was diagnosed with generalised anxiety disorder and depression at the age of 18, I’d known for years that I struggled with worry, and over time this had severely affected the way I was living my life.   

The surprise for me was my diagnosis of ADHD at the age of 29 and the impact this had on me without me even knowing.  Having two invisible disabilities meant that no one could understand the challenges I faced, so much so that it took 25 years for one to even be recognised (which is sadly not uncommon for women).  

I can experience a bout of anxiety that stops me from functioning in my work life or symptoms of depression that may exhaust me to the point where I do not want to be around anyone at all. My day to day may look like a struggle to get out of bed, not being able to totally relax after my working day, or even more irritatingly I just may not want to focus for long periods of time on a day when I have something particularly important to do, just because it does not interest me.  

These small daily struggles may seem unimportant, but they can result in so much exhaustion, making it difficult to get through each day. And it often feels worse because they are not obvious symptoms of what people may see as a disability. They can often be questioned by those who cannot fathom things they cannot see. This leads to assumptions that I am lazy or actively avoiding responsibilities, that I am not working hard enough to become more resilient or confident, or the very worst assumption, that there is just something fundamentally wrong with me and it is down to my own bad choices. This application of stigma on invisible disabilities can be detrimental. The number of times that I have felt my symptoms exacerbating and my self-worth plummeting, when I feel I have not been understood or seen, cannot be counted on both hands. Not only this, but these assumptions about hidden disabilities can create so many barriers in life, both in relationships and your career.  

When I started my work journey I read over the job specification with trepidation – excellent focus, attention to detail, well organised – all skills that I felt I had been lacking over my school and university experience. I didn’t know it then, but my ADHD  made these skills a real challenge and had played a part in my struggle to stay on task when in a school setting. When left to concentrate for long periods of time I often felt restless, would end up fidgeting and as my tutors used to say, I’d become a “distraction and a nuisance”. Over time I have managed to hone in these abilities, becoming particularly proficient because I had to work so much harder to achieve them. 

Within my university role, keeping myself focused is difficult. I often get distracted by noise or interruption and it can make tasks difficult to finish or get stuck into. I take extra care to focus when in a noisy office environment or when surrounded by the constant distraction of technology. My attention level with certain tasks can also be problematic. If I am not interested in doing something then I wholly resist doing it, even if it means procrastinating for hours on end. It has taken my recent diagnosis to realise that I needed to make some adjustments to my workspace and the way I work to help me focus.  

I now make sure my desk is tidy and without too much clutter (although I am a fan of stationery and plants – I mean what’s more relaxing than a plant?), and I have a way of making sure I break down my tasks to make them more manageable. Lastly, despite routine being a big plus for those with generalised anxiety disorder, it can sometimes be a struggle for my ADHD, so making small changes day to day can help me in settling down to complete a task, even the boring ones.  

Team meetings are also a big problem for me, having to concentrate for long periods in one room. “How can I cope?”, my brain screams. Knowing my limits in these situations can be an extra bonus: if possible, record the meeting to review details you may miss later; clarify those important points with an email to make sure you have understood. These little adjustments have made my working life so much easier and they are only small changes.  

Another life-changing, yet small tip, is the use of tools to keep the brain occupied. They say fidget toys were created for children, but personally, they have been my saviour for those long and sometimes dull meetings. If you looked in any of my notes you would see multiple scribbles of objects, flowers, cubes – these are my mind’s way of focusing. A good manager would know that this is the case, that you are trying your best to concentrate and you’re fidgeting or scribbling is a way to combat your neurodiversity. That’s if you have a manager that goes out of their way to understand you and your way of working.  If like me, you’ve had a mixture of management styles over the years, you would know from experience that not having this understanding can be particularly upsetting and cause additional stress and anxiety. My ADHD is a big contributor to my anxiety and depression and when I am already struggling with my work, receiving constant negative feedback from management can put me into a downward mental health spiral. I am not ashamed to admit I have had a few of those as time’s gone by, and I have finally realised that this is okay, we are not expected to be perfect, so we should not have that expectation of ourselves.  

Over my career, I have taught myself ways of combating my weaknesses. I now make long lists of things I need to remember, I ask for help when I haven’t quite followed a conversation or instruction, and most importantly, I listen to my body when I feel that it is becoming overwhelmed or overstimulated. Although I am still guilty of drinking too much coffee now and again! 

Another career pickle I have found myself in is job boredom. Not the general boredom of day-to-day tasks (as we have established, that is already an issue). I mean the kind of boredom where I will impulsively up and leave a job because I no longer feel like it is giving me anything new.  

Now generally this isn’t a bad thing; changing jobs and gaining experience can be so useful in life, and the different skills I have learnt have taken me further than I expect I may have gained in one role. However, bouncing from job to job sometimes does not look so good on a CV – employers may think there is something fundamentally wrong or that I couldn’t keep down a job, rather than the truth being that the job couldn’t keep me. To combat this, I try and mix up my work tasks frequently, volunteering for new responsibilities to keep things fresh and interesting for longer. I utilise my relationship with my team to make sure that work isn’t just about the role but the people you do it with too. 

This leads me to another big problem with having hidden disabilities, the effect it can have on creating and maintaining relationships.  

Relationships can be hard enough at the best of times. The energy that it takes to have a regular social life can be exponential when you have anxiety or depression, and the extra self-care that is required for those with many invisible conditions can be confusing to those who haven’t had this experience. That’s not to say that people won’t at some time in their lives go through periods of anxiety or depression and see these struggles for themselves, but for those with a disability, this is their everyday. This isn’t always understood by many and can put a strain on friendships, family relationships and romantic relationships. In the past friends have become frustrated with my “flaky” nature when I have made plans and cancelled last minute because of my anxiety or depression. They can feel personally insulted or let down without knowing that this is more to do with me than it is them. These little demons as I call them can turn up at any time, usually in tandem, possibly holding hands.  

Communication can also be a big issue. My brain often feels like it is a couple of stops ahead of the train. I am always thinking up my responses whilst someone may still be talking, causing me to miss important points in the conversation, or in many cases interrupting someone in the middle of a sentence in my impatience or excitement to respond (just in case I forget what I was going to say).  

In a romantic relationship, other than being extremely frustrating for me this can also be exhausting for any partner. Especially on days when my ADHD feels like it has a mind of its own. I have always struggled with misreading cues when it comes to dating and can sometimes come on a little strong with potential partners. It has taken me years of trial and error in the minefield that is love to take a step back and really assess a situation before jumping in headfirst. This is something that I look back now on with humour rather than embarrassment when I reflect on my conversational errors. 

Luckily over the years, I have created many strategies that can assist me with curbing my impulsivity, keeping present in the conversation and being open and honest with people about how I am feeling. This is a huge step forward for me. I remember a time when I would become intensely upset or irritable over the smallest thing. Who else starts inconsolably crying over the noise level of a room or because they feel too hot? (I would recommend earplugs for all you noise-sensitive folks out there; they have been a saviour for me).  

These strategies can either change the rest of my day or be gone in the next ten minutes. My moods can switch so unpredictably that you’d think I was a human yo-yo. This is what professionals call emotional dysregulation. It can be overwhelming for us folks with mental health and/or neurodiverse conditions to not be able to put the brakes on our feelings.  

It always feels like there are still so many assumptions when it comes to disability. Many people feel the need or the right to comment on our symptoms or go as far as to say we are personally being difficult. There is a lack of understanding about the fact that you have no control over your symptoms when you have an invisible disability – an assumption you may not make with someone with a visible disability. In the past, I have even gone as far as to hide my own conditions as to not ruin a new relationship or drive someone away. A privilege I fully acknowledge comes from having an invisible disability – oh what a perk, ey?  

Since the theme for this year’s Disability History Month is Relationships and Sex, it would be remiss of me not to mention the impact an invisible disability can have when being intimate with a partner. Let’s not get squeamish here, we’re all adults and sex is natural.  

So many conditions can have a huge effect on a person’s private activities and their pleasure within the bedroom. I cannot comment on other disabilities, nor can my experiences completely tally with others with ADHD or mental health conditions, as everyone is different and has their own experiences.  

However, I can speak a little about how it has affected my own relationships and sex life. As it is most likely that my depression and anxiety are symptoms of my undiagnosed ADHD, it seems prudent to start with the many years of anxiety medication and the huge impact that this can have on your sex drive generally. Not having any energy or desire to be intimate with a partner can really put a strain on your relationship and can be additionally draining when you feel you are having to explain yourself repeatedly. I tell you now that if this is the case, you need to have a serious conversation with your partner about your disability because you are not being heard and you deserve a loving and equal relationship just as much as anyone else.  

Not only this but distraction can be a killer when in the bedroom, especially for those with ADHD. I am one to get distracted halfway through a conversation that I started, let alone having to concentrate for a long period of time during foreplay without thinking about whether I put my washing on! Maintaining focus has always been a big issue for me and it has taken many years to figure out my own needs. Although my own personal remedies for these issues vary, I assure you that starting off by trying out new things and having an open conversation is the key. Discussing with your partner what you like and don’t like and what may help can really change up your experience and can only be positive for everyone, disability or no disability. 

It’s been a long road and I am trying my best to live in the moment and not let any pressure (from myself as well as others) interfere with my own experiences. It’s a process to understand yourself fully, and will never be something you can immediately fix, but trust me, it is worth it in the end.  

The author of this piece has chosen to publish this anonymously as part of the University’s Disability History Month campaign, which aims to raise awareness of staff and student experiences as well as share a wide range of supportive resources and initiatives for the University community.  

Any staff member with a physical or hidden disability is welcome to join the Staff Inclusivity Group, which advocates for equality in the workplace for colleagues with physical or invisible disabilities. The group is also a place to seek support from one another and challenge University policies and practices. 

Equality, Diversity and Inclusion

Reflections, comments, discussion and opinion on EDI topics from Loughborough University staff and students

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