Outside Ani’s way
6 minutes reading time
My name is Ani Patas. I am chronically ill and have a hidden disability. My diagnoses are Lupus, Fibromyalgia and Hypermobility Spectrum Disorder.
My outdoor experience started at a young age and was always something my Mum encouraged. I’m fortunate enough to have a parent who wanted me to enjoy the outdoors and sports. I took after-school swimming lessons, which made me a confident swimmer. My Mum would insist on walks around the streets in the rain so I would get used to being outside in not-so-nice weather. She took me out on bike rides. She took me to youth hostels and we’d go hiking, she even got me to read the maps. I went to summer camps where we slept in tents, played games in the woods in the dark and did navigation skills.
I ended up dropping out of ALL of these things when I was about 15 years old. They were all way too hard for my disabled body, and I had no idea how to make them suit me. My Mum convinced me to go on a bike ride with her, and I hated every second of it. I got so weak and exhausted that I physically couldn’t use my brakes , which ended up in me taking a nasty fall. Afterwards my mother felt so guilty she never pushed for things like that again (It’s still something I can bring up if I ever want to pull a guilt trip).
I would sleep all day after a half hour swim. I could only walk two miles and was miserable for most of it. I hated being out in the rain, I despised the snow. A seven day camp where we had a full day of activities and were socialising with other young people wore me down really quickly. By the end of it I got irritable and upset and most of the people sharing the tent with me were sick of it. To this day I still haven’t gotten over how much I HATE long bike rides.
Soon enough I didn’t like to go far from home, I didn’t like meeting new people, and I always wanted to be indoors. It got to a point where I would refuse to leave home at all. This wasn’t just moody teenager syndrome, this is how I was right up until two or three years ago. I was terrified of the pain going from just about tolerable, to excruciating. It impacted everything from friendships, higher education and work. It even impacted my relationships with my family.
This is the ugly truth of what happens when you have no idea how to make things accessible and work for you and what happens when no one else considers that either. When you are disabled or chronically ill no one gives you a guide book on how to set your boundaries, how to explain those boundaries to people, how to find your limits and work with them.
I spent so long trying to act non-disabled thinking that’s the only way I could go through life. When I couldn’t walk much, I didn’t want to use a wheelchair or mobility scooter to go out shopping or with friends. My internalised ableism led me to think it was better/easier to do nothing than to be pushed in a wheelchair. When all of that didn’t work I just gave up on trying to do anything.
People with physical disabilities are three times more likely to have depression; Another thing they don’t explain to you. It took therapy to get my head in a place where I could cope with things outside of my home. I learned how to establish what I needed and what boundaries I had and how to keep them. I actually lost quite a few people in my friendship group because of that. But we all go down different paths as we grow I suppose.
It would be easy to move on to this next paragraph saying “but now I’m all ok” and act like I’m an inspiration that overcame the worst thing imaginable. I haven’t overcome anything, and I never will. Lupus, Fibromyalgia and HSD are incurable and remissions are often short lived. Don’t feel sorry for me, there’s nothing to feel sorry for. That statement isn’t a depressing line to encourage sympathy, it's straight up facts that need to be understood in order to understand my disability and how I will never be publishing a “I was cured in the mountains” book. I’m cool with that.
When I go outdoors I’m not overcoming my disability, I’m living with it. I spend a lot of my time trying to listen to my bodys rather aggressive signals and coordinate, not just my adventures, but my entire life around it. If I don’t plan practically every aspect of my week I could end up over doing it and have to put everything in life on hold, sometimes for quite a while until I’m recharged and back on track. An example would be something like a hospital trip to London will mean I’ll be too tired and in pain to go out. I have to consider how much that has impacted my energy levels and what I can adjust to mitigate it. If I don’t, I could trigger a flare up and make myself seriously ill.
I’ll spend the week instead on the sofa resting, trying to avoid thoughts and fears that I’m being a wimp or weak staying at home.
Does that sound like I’ve overcome anything to you?
I still don’t feel comfortable in group hikes that have no idea what I have or how I have to handle it. Often group hikes go for miles and inclines that I can’t do, and if I did it would take me twice the time. Skill courses feel like too much to handle. Most organised events whether it be hiking, rock climbing or kayaking often feel off limits for fear they can’t/won’t be able to accommodate. I’m often too afraid to ask after past experiences.
Image Credit: Theodora Van Duin
But something I’d recommend to others in a situation like mine is to find your boundaries and stick to them. Even when you’re on your own, don’t push yourself. These activities are supposed to be fun for you and only you! Everyone else can take care of their own fun. Don’t push through that longer hike because you want to be able to keep up. Take breaks if you need to, as many as you need to. Once I got over this mentality that I had to constantly prove that I was physically fine and able, the way I experienced the outdoors was so much more enjoyable and a lot healthier. I don’t burn out as much as I used too and things hurt less.
Very recently I started doing activities with people who I had conversations with regarding my health and that’s shown to me that people who are non-disabled can simply help with access by being able to have that conversation comfortably. Not out of sympathy or constantly seeming concerned with your well-being and asking “are you sure?” when I say I’m ok. Not beating around the bush or brushing it off saying “you’ll be fine”. Just a straight up, pleasant conversation like I’m giving you directions to the car park.
When I was hiking with a friend recently, she said two simple and short sentences that made me feel miles better. At the beginning she made it clear that we can go a longer route or a shorter route and that we can just see how it goes. Then at the point where we could do the full route or cut it short she again asked how I was and which route I would like to take, making it clear that there’s no pressure.
That might seem trivial to some people, but for me it meant I felt comfortable to say what I needed and made it clear that my needs were being considered. It made me feel safe. That’s not something I’ve come across very often. Something as simple as check in can make the outdoors a little bit more accessible.
Far too often when you start explaining your needs or giving people a heads up to how you feel they shut down. I don’t know what it is about disability or chronic illness that makes people feel uncomfortable, but sometimes it feels that it's only ever palatable to non-disabled folk if it ends in some inspirational achievement or magical cure. I can’t give you that. Can we just normalise people having additional needs and disabilities?
