Building on her two recent articles on The Active Amputee, Anoushé Husain explores the challenges people with invisible disabilities face in their day to day lives. She builds a strong argument for finally creating those badly needed safe spaces that allow honest, constructive and healthy conversations.

How did you lose your arm? Oh, you write really well with your left hand, you must have adapted really fast! I can’t imagine living with one arm…

Over the last few weeks, I have had an incredible number of life changing experiences. From giving a workshop at the Women’s Adventure Expo and attending my first LimbPower junior games to picking up an injury due to having Ehlers-Danlos Syndrome and having to pull out of the climbing season. I won the Sunday Times Helen Rollason Award, completed my indoor climb of Mt Everest for Shine Cancer Support, met the Prime Minister and gave the opening headline talk at this year’s Women’s Climbing Symposium. Frankly? It’s been nuts but in an incredibly good way, aside from the EDS complications and my battle with competition fitness.

All that aside, one issue has really struck me over the last few weeks and that is the perception and assumptions of others. I wrote about this a little in September for Lessons in Badassery but I’m now going to dig much deeper.

About four weeks ago, I was getting groceries delivered home and when I went to sign for them, the delivery man commented at how “able” I seemed to be with my left hand. I must have adapted very quickly since my accident. I corrected him, I was born this way and so never had to learn to adapt (aside from the fact that I am actually wired to be right-handed). I was slightly irked but also very curious at the fact that this man saw me, came up to a conclusion and essentially, in a very convoluted way, complimented me. What he missed, what he can’t see is the daily struggle of managing my joints due to EDS. The ankle sprains, hip twinges, fatigue and constant battle of needing to map out every symptom and work out whether I’m in a flare or not.

Until last year, I officially had a disability, missing my right arm below the elbow. I therefore have what some might call, a visible disability. I am also protected under the law due to having had cancer but the impact of the symptoms are now so well-managed that it’s instinctive and routine so I don’t really consider myself to be “disabled” due to my cancer treatment (even though there are some losses and I do need some help to manage them). However, EDS, for me, is disabling. I don’t like calling it a disability but it is certainly a lifelong condition that can disable me on certain days. I am constantly battling the losses and very much so am in a fight to retain my health capital. I would definitely call it an invisible disability.

With a formal EDS diagnosis I walked away from the territory of having a visible disability that is easy to talk about, to starting to navigate the very murky waters of invisible conditions. I genuinely feel a lot of empathy for anyone with an invisible condition. It takes an incredible amount of mental energy to talk about it, to explain how it is impacting you, to work out what you need to keep functioning and integrated in society and, unfortunately, in some cases, to persuade people that you even have it in the first place. This is on top of actually managing the condition too.

I genuinely believe that this entire situation is made harder by the fact that we as a society habitually judge a book by its cover. We stop at what we see. For those who know me, my EDS has become visible. There are days where I can’t eat much, I might be quieter or my face is pale. There might be tablets or I might be limping slightly but 95% of my time, I can quietly manage my symptoms, reinforcing the invisibleness of the issue. In fact, if it’s visible, I’m probably struggling with symptom management.

Is that where the problem is though? Is it only when an invisible condition becomes visible that it can become a subject of conversation? What about people who have conditions and don’t want to disclose them for fear of judgment? Are they then condemned to manage their condition in silence, navigating that world in isolation but fearing the judgment of others if they eventually “come out” or are seen to not be coping? Has anyone considered the impact on their mental health or quality of life by them feeling like they can’t talk about their invisible conditions? Has anyone noticed the lost opportunities these people have to learn how to manage their conditions simply because they are not having the right conversations?

The vast majority of people who are limb different have lost their limbs and quite a lot of them will have lost those limbs to chronic conditions or illnesses which are inherently invisible. A staggering 1 in 3 people will have cancer in their lifetime and 1 in 4 people will experience some sort of mental health issue at some point in time in their lives. I’m not including the statistics around type 2 diabetes, auto immune conditions and so many other issues that are “invisible”.

This is a cataclysmic issue that impacts so many of us and yet we are still not able to have the right, constructive and healthy conversations.

We need to start looking beyond the book cover, we need to start having these conversations. We need to talk. We need to start creating safe spaces for these conversations to happen.