I wanted to talk about something slightly outside of Autism and Mental Health today, although very much related to the subject of Hidden Disabilities. I haven’t shared much on my physical conditions, all of which were diagnosed a few years ago, although much like my Autism, its been something I have struggled with under different labels throughout my life. I want to raise awareness not so much about the said conditions individually in this piece, but the effects of having hidden physical disabilities and some of the challenges I’ve faced personally aswell as how it interacts and contributes with my Autism and Mental Health.
While writing this, I also doubled checked whether Autism and Mental Health are considered officially as hidden disabilities which unsurprisingly they both do (always good to double check). So hidden disability is quite a good subject to cover on AMHA.
So, for a start, what is a hidden disability?
A hidden disability can be a physical, mental or neurological condition that limits a person’s movements, senses, communication or activities that is invisible to the those around them. The very fact the persons disabilities are invisible can lead to misunderstandings, false perceptions, lack of support and frequent judgement from those around.
The public perception of a disabled person is usually defined as a person in a wheelchair, an elderly person or a person visibly in pain, In other words, a disabled person must be visibly disabled either physically or mentally to fit the bill. Thanks to the hard work of many disabled people including athletes at the Olympics in recent years, the definition of a disabled person is changing slowly to show that not all disabilities are visible, and for those that have visible conditions especially, that it doesn’t necessarily stop a person living a fulfilled life.
So, what’s wrong with ya then….
When I was diagnosed with Autism in 2013, it was like a key to unlocking the many medical mysteries that were mounting up since I was a child, having struggled with various physical issues with joints, dislocations in my knees and arms, strange intense pains usually in my legs that were put down to growing pains 90% of the time, (Given I was 6ft since the ages of 14 years old, it started to sound ridiculous by the time I was in my early 20s). The older I became, the more of a struggle it became, up to this point, all my disabilities were very much invisible or mysteries that were always on the back burner. I had put a lot of effort into being as independent as possible, having been a young carer for over 12-15 years, I was used to having others depend on me, not the other way around. With my Autism and Mental Health aside, physically speaking, It wasn’t until the catalyst of removing some major weight when I started college did I start to really notice a deterioration in many of my physical symptoms, almost like the weight was keeping my body together. It was a slow deterioration in the beginning, but once the dislocations began, and I started getting numb fingers and joints, feeling fine one moment and then achy and tired the next, I knew something wasn’t right. The more visible my disabilities became, especially the tiredness and struggle to walk due to the pain, the harder it became to function and accept what was going on, especially all under the label of growing pains!
After being dosed with enough radiation to make me look like I’ve had a trip to Chernobyl, combined with my then new Autism diagnosis which helped piece some other connections together, Hyper-Mobility, Fibromyalgia, Arthritis in my arms (good bye career in art and design) were finally diagnosed. Although more recently the potential for Erlos Danlos Syndrome has been spotted, however finding a Dr able to diagnose it on the NHS has been another thing altogether.
Since being officially diagnosed, I have had an interesting few years health wise, going from invisible to visible disability and then back to invisible disability again, but with the occasional bad day where its more visible thrown in, seeing how people have treated me has been a huge eye opener which I hope to use to raise awareness in the future.
Visible vs Invisible
My coping mechanism throughout my life has been to hide and mask my disabilities, whether it was Autism, Mental Health or physical, I have always tried very hard to keep it private, and not make a fuss, even putting up with people calling me shy, quiet, strange, weird etc… (some of the nicer things I’ve been called without the colourful metaphors). I have tried very hard to pretend everything was ok in my life in fear of being treated differently by others. All my disabilities are internal and not obvious unless Im having a bad day, even before I had labels and official diagnosis, it was just me, and Mental Health with a bit of Dyslexia thrown in for good measure. The real struggles in my life was coping as a young carer, doing my best to look after my family and endure the hardships we went through, without any help and support, while trying to be as independent as possible. Although cracks started to appear in my Mental Health by mid-teens. Behind closed doors, physically speaking I struggled regularly with strange pains in my legs and arms which were always put down to ‘growing pains’, it was like a scratch you itched every now and then but didn’t take seriously as the GPs weren’t concerned, other symptoms like the tiredness or achiness got lost with Mental Health. When the first dislocation happened, because it was so quick and went straight back in, everyone around me thought I was faking the pain, “How could you dislocate Sonny, you would need to go to the hospital!” was usually the reaction I would receive, all my years hiding didn’t help the matter as no one was aware, not even myself to be fair what was happening. When I left school most of the focus was on my then suspected Autism and getting it diagnosed, I was so focused on getting better, and no longer being a young carer, I was determined to sort myself out. Unfortunately by focusing elsewhere I ignored all the initial symptoms of my physical disabilities developing which reared its head not long into my first/second year of Art and Design college.
My plan was to become an artist, or at least something in fine art or graphic design, It was something I had become very good at from years of hard work and practice, just when I was about to start my final year of Art and Design, the strain of overusing my hands started to cause pain in the joints and lose control of whatever medium I was using, I then started experiencing tiredness and lose of feeling in my fingers, I thought It was just my old Nintendo injury playing up again (90s childhood issues lol), but over time I lost my ability to draw properly, or even write for more than a minute without the tiredness setting in, After a lot of thought and stress and worry, I decided to switch over to my backup skills in computing and programming, but it was never my career plan to sit behind a desk, all I had wanted to do was make art and draw. I remember making excuses to my art tutors at the time, I didn’t know how to explain to them what was going on as I didn’t have a clue myself. Thankfully my path via IT and Engineering was a success, as it was a particular interest/obsession which played nicely with my Autistic brain, I picked it up extremely fast, although the symptoms I struggled with during Art and Design college where still there, as I wasn’t straining my hands the way you do holding a pencil etc the symptoms became less noticeable. It was several years later when I was working as a disability teaching assistant did I notice a deteriorated again, as I was trying to finish my Engineering degree and work at the same time (thought it was a good idea at the time). I don’t know if it was a combo of exhaustion and stress or the lack of support for my Autism and Mental Health, but my pain levels started to spike in the day for the first time, spreading to new parts of my body like cold chills, and my ability to walk started to become a real issue, becoming dependent on the car more and more as public transport was causing too much stress and energy, when the slowness in my joints kicked in and the grogginess, I knew something had to change. Then one lovely morning, I caught my foot in a hole one of the students made in the courtyard causing me to fall flat on my face, after a moment of being dazed, I looked up surrounded by several students poking me, although I can laugh at it now, my pride took a bit of a beating that day, it was at that point I knew my pain levels were too great, and my joints weren’t working properly, I would never have normally fallen, I could tell I wasn’t balancing, for the first time I needed medication to relieve my symptoms and support my mental health which was deteriorating from the stress and pressures coping day to day with Autism in an unforgiving environment.
After the fall, and a long story short, it wasn’t long before I quit my job as a TA, and started working in IT, overtime I started using the crutch openly as I could no longer mask or hide my physical disabilities, I didn’t know what to expect at first, most people just think you have a broken leg, or its temporary especially when your young with no obvious history of disabilities. At the time I looked fit and healthy at my original weight, although I was struggling in the background with Autism and Mental Illness as usual, my biggest battle was with the side effects of the medication. At the age of 23 I was given a disabled badge for the first time, certainly not part of my 5 year plan, although I was used to using disabled parking for mum for many years, now having my own, although a relief not having to walk so far, but now discovering how other disabled people can behave when you’re not visibly disabled certainly knocked my confidence. It started with very judgmental stares, old ladies shaking their heads at me with some openly moaning that a young person is taking up a parking space, the cherry on the top for me was having an actual detective (not just a ordinary policeman) wait for me for several hours inside Milton Keynes shop mobility because the lady working their thought I was using someone else’s disabled badge. If I had the crutch or was in a wheelchair, it was obvious, there was no doubt I was disabled, some members of the public can be very kind and helpful, I noticed this especially when I was in London, I would get offered seats to my embarrassment, even if I got questioned why I was in disabled parking, all I needed to do was lift the crutch and people would apologies, but it placed a real strain on my Autism as I dreaded confrontation, I just wanted to go out in peace and be left to my own devices, not have to defend and justify my disabilities 50% of the time.
Before I could adapt to my new situation, my health deteriorated again very quickly from the side effects and interactions of the medication I was on for my Mental Health and pain levels. Most of the weight I had lost when I left school had been put back on again very quickly crippling my joints and back, I became puffy, pale and tired from the medication, which also caused psychosis and amplified other issues with my mental health, I developed a sleep disorder so my routine was virtually gone, I was experiencing agoraphobia and social anxiety, I was also unable to mask my Autism so people started noticing my stimming and sensory overload. When people I knew saw me, I was either starred at, or avoided. As I adapted to using a crutch I quickly discovered how hard it was to access the outside world as everything’s designed for abled bodied people, something I remembered well when Mum was in a wheelchair. The only upside to being obese again was people could tell I was visibly disabled so virtually no one questioned me, but being judged for being fat again was something I didn’t miss from when I was a teenager, I also missed being able to wear nicer clothes that fit properly, or the ability to fit into smaller seats, or have full range of movement in my body. I started to notice people talk through my parents instead of me directly when out and about which made me feel quite isolated and looked down upon. When I decided to stop taking the medication, and try my long haul back to recovery, although I was once again in control of my Autism, and Mental Health, the pain, dislocations, swelling and tiredness were all at war with what was left of me. Looking at myself in the mirror was a shock, and to see how others now treated me made me feel very isolated and angry.
After a lot of time and effort trying to look and feel more like myself, slowly relying less on the crutch, once I dropped most of he weight off and I started dressing and making more of an effort with my appearance, I started to receive the other end of having an invisible disability again, however this time around, my physical disabilities were a lot harder to cope with, especially on the days where I was struggling with pain. Unless said person knows me, or I have openly explained, people don’t realise I’m physically disabled, or if I have a few days where I don’t need a crutch it doesn’t mean im not struggling, or that im not going to need my crutch potentially In a few days. It can be even harder using disabled seats on public transport or disabled parking where I get openly questioned, even having a screaming middle aged man last week block me with his car as I was reversing, despite showing him my disabled badge, I still had him shake his head at me in disbelief, yet ironically I get non disabled people park up next to me almost every time without question just to wait or drop someone off working in the shops opposite. I started to feel very watched and judged all the time, especially on the days I was having a good day, I didn’t want people to think I was faking my disability because I could walk ok one day, and then limp and struggle the next, when you don’t know people, the last thing I want to do is talk about my struggles all day long, having to justify myself. The lack of support from the care system most certainly didn’t help, now that my disabilities are not obvious on the surface, The saying “your young, you will recover“ gets thrown around a lot, because I am afraid of the side affects pain medication and SSRIs have with Autism, usually I get told it’s all in my head, or it’s my Mental Health. The scary thing about it all, is I have no support, and no medication to dampen the anxiety, panic or sensory overload, it’s just me.
As you may have noticed reading my experiences, there is something I call the crutch conundrum, as I rely less on a crutch or wheelchair, yet still needing disabled parking, or priority seats, or the need to use lifts or disabled toilets, because of the judgments and stares from people passing by and other disabled, I started to feel unable to use disabled facilities or parking spaces without my crutch just to show I’m disabled, and not some young person abusing the convenience of easy access, even dad at times feels a little awkward which I found quite difficult as it’s hard enough to deal with my own insecurities. As I’m still recovering, some days I feel scared to be ok, and have a good day, or even recover and look normal In case it meant receiving judgmental comments and stares or feel able to use disabled access in public. As my conditions are life long, it’s not like a broken leg, I’m always going to have what I have, but it’s how I manage it and knowing my limits is the key to how I’m going to cope, it was a scary realization that all the awareness I was doing for Autism and Mental Health, I now needed to be brave and stand up to those who criticize and judge me because of my physical disability which at least 60% of the time is invisible.
End of Part One
Despite all of this, I’m very thankful for the time I had to contemplate my situation during recovery, having the experience as a carer, and as a disabled person has prepared me so it wasn’t a sudden shock becoming disabled. Although I wish I could travel back in time and tell myself not to take the medication that caused a breakdown, Im glad it happened as I know not to in the future, and I can certainly say im stronger as a person coming through the other end, especially experiencing disability in various workplaces when I was on contract. I know my limits now, and when I need to rest, or when I cant do something. I know for one thing, throughout the last 2/3 years, without AMHA or the other projects I have been working on, my recovery would have been so much more difficult, my projects have forced me to put myself out there and write about the hardest areas of my life I have kept private behind closed doors, which I think hasn’t helped my situation, even writing it out like a timeline has helped me to move on and understand better.
Thanks for reading so far, I must admit this has been a challenge to write as im trying to cover three distinct areas, Autism, Mental Health and physical disabilities, which can all blend together.
In the second part I will discuss in more detail how hidden disability has affected my Autism and Mental Health. In the meantime, don’t forget to check out the other pieces by myself and my other contributors. If you have a story you would like to share, please get in touch at firstname.lastname@example.org We are looking for new stories to share with our growing community.