By Charlotte aka The Spectrum Girl
Recently I left home to go on a health journey to Thailand in order to get away from the freezing cold temperatures of Norway and the increase of chronic pain connected with it.
In addition to being autistic/ADHD, I have hyper mobile Ehlers-Danlos syndrome which is a connective tissue disorder that affects my collagen which is in the ligaments and joints in the body. The biggest hint is already in the word 'connective tissue', so literally everything that keeps my body together is affected. I have good days and very bad days, but it can still be hard to express my level of pain even on my worst days because it's not something that you can really see but something only I can feel.
Judged by physical appearance
It can be hard for people to know what I am going through if they only judge by my external physical appearance. Because you can't see that I am Autistic and have ADHD (plus disorders like CPTSD and depression), all combined on a bad day can really make it difficult for me to function in this world. For me it means that I am highly susceptible to getting cognitively burned out either momentarily or over periods of time, all depending on the situation I am in. On the outside it is impossible to see what I am experiencing inside unless you have a very trained eye for that and can tell by subtle changes in my body language. I may have a sudden stutter and fragmented speech, the way I respond to you and my surroundings also changes. I may seem agitated and get desperate to leave an overwhelming situation, but instead I could be mistaken for being aggressive and rude. But because I've taught myself to mask very hard and dress myself in seemingly tidy looking clothing people seem to perceive me as a much more put together person than I really.
I've been fat, thin and in the middle. I've had to go to the poorhouse for food handouts because I was poor but noticed I got treated with a lot more respect then compared to when I had a high earning job with a good income but was fat, I've noticed a clear decrease of respect from people with the increase in my body weight.
I can tell you from experience that we do get treated differently because of the value society connects to appearance no matter what the real circumstances of your life may be. People see what they want to see. Even $5 shirts and $10 pants from h&m seems to make people think I'm wearing high end clothes when I'm thin versus thinking the opposite wearing the same clothes when I was fat.
This is why I am not surprised by not being taken seriously about being disabled.
How my hidden disability visually presents
As someone with hEDS I do not use a cane or crutches (yet), and I don't use a wheelchair on a daily basis, but I do have a need for ambulatory wheelchair use depending on the situation, for example at airports to avoid getting pain flares during traveling. My need for orthoses varies and I use them as a tool to prevent injuries or lessen pain in certain situations, but I don't use them all day everyday. If I'm not actively using or wearing pain preventative equipment like orthoses it's harder for people to tell whether or not I am physically disabled. If I am not experiencing a pain flare or if I'm lucky enough to have a good period with less pain than usual that will also make it harder to tell that I am physically disabled because my whole mood will be lighter and and I will be more outgoing and active. The danger is that those are the times when I tend to forget my physical disability and may over exert and put too much strain on my body, and I end up with small injuries that are internal, like bruised tendons, joints and ligaments which cannot be seen by others but very much felt by me.
If these were to be perceived visually, this is how it will look like to others:
During walking I can get a sudden subluxation out of the blue in a knee or foot and get a heavy limp and need to rest or even have to stop walking completely.
I might get sudden shooting pain in random areas of my body. It visually presents with my breathing becoming very uneven and shallow. I will grasp at the painful areas of my body as a reaction.
Sometimes I'll have large black and blue bruises on my arms and legs and some people do sometimes comment them if they are very big or many.
I get intense stomach pain at random times and need to lay down. So I may be crouching forward whilst walking away to look for a space to lay down or I sometimes go home.
I can get sudden blackouts before my eyes and will hold out my arms to reach for anything to hold onto not to fall over. I will look very disoriented for a little while until my blood pressure stabilizes again.
Most of the time I am working extremely hard to avoid doing things that I know leads to me ending up in painful moments, and therefore people rarely get to really see how much pain I actually struggle with. I also don't really let it all go until I am at home by myself either because I hate having an audience while I'm in pain. The looks people give me are often filled with disbelief and it just contributes to manifesting as stress leading to even more pain. Anyway, all this is why I need various forms of assistance, accommodation or accessibility, to help prevent the worsening of my illness.
Not all physically disabled people are very obvious. Society has been teaching us to look for what you see on the outside when identifying someone who is physically disabled and way too little time and effort has been put into educating people about the existence of variations in disabilities. So in the end I don't blame people for being confused about me being physically disabled if I’m not in a wheelchair, using crutches or wearing orthoses. But I do care if people stay willfully ignorant now that we have access to all the information in the world.
Problematic 'invisible disability' & traveling
There is a tiny problem with all of this when it comes to traveling. The travel industry is very inaccessible for people with various disabilities other than permanent users of mobility aides, and that's why it becomes very hard for those with disabilities that don't visually present in the way people usually expect. I myself am multiply disabled with so called 'hidden disabilities' as I'm autistic+ ADHD and have hEDS, and how the world is laid out isn't always the most practical for someone with my combination of accessibility needs. I need sensory accommodation as well as mobility accommodation but that depends a lot on the environment I am in. As an autistic, my functional levels drop very low in crowds and noisy environments and those are the situations I need sensory accommodations like the possibility to stay in a quiet area to be alone for a period of time, or if I need to fill out long forms in a waiting room and do multiple other steps to get through I will need assistance to help me to do the required steps because those situations can quickly get too overwhelming for me and end up taking an enormous amount of time to finish without assistance. But when people look at me they tell me that I don't look autistic and they would've never thought it. But the problem is that there should be more preparedness for when someone autistic comes around asking for assistance or accommodation and that there will be some solutions ready to be provided without it feeling like a huge deal, some people look at me like they have never seen someone telling them that they're autistic and would like some help. So that is what I mean when I say there's a lot of people who have other accommodation/assistance needs than just mobility aide like a wheelchair.
Calling it a hidden, or what some say 'invisible' disability it's actually quite wrong. It's only invisible because we are working extremely hard to hide our pain or difficulties in every day life. With regards to my chronic pain I've been eating painkillers like candy to get through a work day, and when it comes to being Autistic and feeling socially different I've had to run to the bathroom to hide from difficult social situations when I struggled with blending in. It's not invisible or hidden to me, 'harassed into hiding' is more like it.
How do I organize traveling as someone disabled?
Like I've mentioned I will need accommodations. As a disabled traveler I need them in order to feel safe and in order to feel that I get to keep my dignity by being treated as an equal human being in case any complications would occur on my trip.
There's an incredible amount of formalities that needs to be sorted out beforehand, like mobility assistance if that's needed, medical documentation if needed, insurance, various prescriptions and even learning the rules and regulations of bringing medication to various countries. It may not sound like a lot, but it's actually the most time consuming part of organizing a trip as a disabled person. There are huge differences in what kind of assistance each country, airport, city or hotel has to offer and trust me there are not enough solutions available for the diversity in disabilities, and this is a huge problem.
Knowing how to navigate through whatever accommodations there are that is available for you where you live, is hard enough as it is, so you can imagine how hard it is to know where to look for it or where to ask when you are traveling and in need of assistance or accommodation. When the general population hear disability' they usually always assume it means being in a wheelchair, but disabilities comes in many forms and the world is not aware of that yet.
Traveling as a disabled person makes me more vulnerable than other people if there are complications that arise along way. I have experienced this firsthand on my latest trip, and no matter how much I had prepared in advance for my journey to make all the arrangements for assistance and accommodations I needed there were still some problems that occurred.
What is the conclusion of all this? The lack of accessibility and inclusion world wide is huge but that doesn't mean that people who have disabilities shouldn't have the same access to exploring and experiencing the world as non disabled persons. By sharing about my experience on this topic I hope it can be of a little help towards a positive change.