I’m tired – the disability reality that people don’t talk about

The day that my golden retriever Cindy died was a really tough day for me. I didn’t want to have to tell people about it and have the same conversation over and over again, so I posted it on Facebook. Just to get it done. However, as the day went on, I was really touched by all the kind people who left comments and kind words, or things that they remembered about her. I wasn’t particularly looking for interaction when I wrote the post – I just wanted to get the conversation out of the way. But I was glad that I did it.

My blog isn’t the kind where I really open up online.

Some people do, and I don’t want to judge them. If it helps to write all the emotions down and get it out there, and even better to get support from others, then why not? That’s cool. But if I’m having a bad day, generally the last thing I want to do is tell other people about it!

I think a lot of this has to do with me as a person, and nothing to do with having a disability. If anything, I don’t share because in the past I’ve been the person that other people go to when they’re not ok, and then I got myself the reputation as the one who gets things done, finds solutions, and sorts out problems. Somehow people expect me to be positive, coping, and to have my sh1t together all of the time. Like some kind of superwoman – which, by the way, I’m not!

Things have got better since I’ve been with my partner. I do open up more now, but not usually on my blog or social media. I think live and let live – if people want to reveal so much of themselves it’s their choice, but I can’t relate to what motivates people to do it. So I don’t.

There’s a problem though. Not sharing means other people don’t know when things aren’t ok, or why.

Sometimes it’s not as clear-cut as just one thing that’s gone wrong. Generally people can understand a specific thing. I had a bad day because something went wrong at work/I have a headache/my car broke down or whatever.

The thing is – sometimes I get really tired. Not the kind of tired after you’ve been reading a good book till 3AM and still have to get up for work, but weary of having to do twice as much work as other people just to get a job done.

It’s not all of the time. Many things that I do at work are just as easy for me as anyone else. Learning when I was 5 means that now, I can type faster than a lot of sighted people, which is great when you need to make detailed notes or get an accurate record of meetings. Thanks to my screenreader, I can read, write, work with spreadsheets, find information, and manage pretty much all areas of my business myself. Working in two languages isn’t more difficult for me than for anyone else. I’m organised, so my systems work well, and working for myself has eliminated a lot of inaccessible practices that I had to work through in other jobs.

Sometimes people seem amazed at some of the things that I get done as a blind woman, whereas for me, they’re just normal things that aren’t particularly difficult. They would be hard for someone who suddenly lost their sight, but I’ve got strategies to get them done, so it’s not a big deal and I can do them on autopilot.

But then there are the other things that leave me feeling exhausted. And it’s not just one thing. It’s the knowledge that often I have to work twice as hard to do something that would be really simple for someone else. That is frustrating at times.

When I lived in London, it wasn’t so much my job that drained every bit of energy from me, as the trek across London each day (3 hours in total). Yes, I enjoyed reading my book on the train and chatting to the friends I made on the commute, but it was the careless tourists, the terrible drivers, the people who nearly trampled on my dog, the roadworks that appeared in a different place every day, the lack of audio announcements on the trains, the people with pushchairs who thought that everyone else was a second-class citizen and should get out of the way – preferably into the road, the cyclists who thought the red lights didn’t apply to them, and the religious or drunk people who thought that the woman with a guide dog was a captive audience. They stole my energy. One on its own would have been fine, but it all adds up, like putting more and more in your shopping bag until it’s so heavy you think it might split and you are sooo glad to get home and lock the door behind you!

Does that make me a less capable or less independent blind traveller, or just a more honest one?

It was hard. Some days were fine and I didn’t experience any of this. Others weren’t. If you’ve already had a tough day at work, things like that can wear you out!

When I ask my partner for help on my laptop – sometimes it’s to draw on his vast IT knowledge, but more often than not, it’s to do the simplest task that I can’t do because some unhelpful person or organisation has designed their site in a way that I can’t use it independently. So it takes longer.

I’m not going to get into the discussion about whether it’s a result of blindness or society not being accessible – because I think on a day-to-day basis, it’s often a mixture of both.

The fact that I can’t find my keys because I wasn’t organised and didn’t put them in their place is my fault – not the society around me. And the fact that it takes me longer than someone who can easily see where they are is definitely related to the fact that I can’t see them.

The fact that if I want to go somewhere new on my own, I need to do more planning than someone who could just show up and follow a map is just something I need to factor in, as is the fact that we sometimes need to do a bit more work beforehand to make a group activity with friends accessible to me as well. It’s not a reason not to do these things, but doing it takes time and sometimes energy.

The fact that, in order to take part in a course, I have to write several emails, make phone calls and chase around till I get an answer about accessible materials is definitely a case of the organisation in question not making it easy for me. I can’t just sign up an go.

On another self-study course that I started recently, I got part-way through module one before hitting the roadblock of a question called “label this diagram”. The content was easy. The diagram made it impossible for me to complete the task. So the options were find an alternative course, have a lengthy discussion about accessibility, or give up! I am not a fan of giving up, but I have learned now to choose my battles wisely, and focus on the things that will really add value.

So, sometimes nobody is at fault. Also, finding someone to blame doesn’t make the extra work go away.

On some days, all this extra work builds up. If I’m tired anyway – because life happened that way, it can make me feel exhausted. Most of the time I just take it in my stride, but each of these things saps a little bit of energy, and when you add them all together, it accumulates.

I don’t want to whine about it. I don’t want others to feel sorry for me. I don’t necessarily need people to come up with solutions because chances are I already have one.

The other problem is that people are often not that good at listening. They’d rather tell you about how something similar happened to their neighbour’s best friend’s spaniel, or about the vaguely-related article they read, whilst I sit there trying not to get bored and disengage because I don’t see the relevance to the thing we’re actually discussing. People want to contribute something, or at least not to admit they have no idea what to say – I get that. But listening is such an undervalued skill nowadays!

So I often don’t share, because having to listen to lots of words with people trying to fix problems that I’ve already fixed is also kind of tiring. I just want people to understand that because I’m not openly losing it on Facebook or crying in a corner somewhere, it doesn’t mean everything is easy or fine.

I get on with things. I’m not an emotionally needy friend. I’m maybe a difficult friend to have because my first thought isn’t to share when things aren’t going well. But sometimes I’m not looking for comfort – just for someone not to try and get me to carry their shopping bags as well whilst I’m struggling to carry my own (I mean the shopping bag analogy from earlier in the article).

It doesn’t last long. A good night’s sleep, a good distraction – and the next day I’m ready to face the world again with new energy. But on a particularly tough day a couple of weeks ago, I did ask the question as to why we never talk about this.

Are people who live full and happy lives despite their physical disability not allowed to say “I’m so tired today because of all the extra energy and concentration that I have to put in?”

When I was younger, I would never have admitted it. “I can cope! I can do anything!” I still believe that I can cope and do anything I want to, but just because you can do something, doesn’t mean that there is no cost involved – whether that’s material cost or cost in terms of effort. Sometimes it’s the same amount of effort as anyone else would need. Often it’s more.

There is no better time to have a disability such as blindness. Technology makes so many things possible. There are aps on my phone to read things, tell the colour of things, and help me to shop online without ever having to navigate a shop on my own! My laptop gives me access to find information or communicate with friends and customers across the world. I have a supportive partner, family and friends.

But sometimes, just because I can make things look easy, it doesn’t mean that they are.

I’m not really sure where I’m going with this – other than to say I think we should have the freedom to be real. I think people with disabilities often put ourselves under pressure because others believe that we can’t do things, or are amazed when we can do things that aren’t that hard. So we don’t want to admit any sign of weakness, because it somehow reinforces the stereotypes or a “can’t-do attitude”. Sometimes we get tired of people who always see the problems and never the solutions – and the worst thing would be to be seen as the same as them. And yes, I don’t have much patience with people who are unwilling to try because everything’s sooo hard!

But going back to the original point – admitting you find something hard and doing it anyway isn’t weakness. Doesn’t that mean you’re a stronger person than the person who pretends the hassles aren’t there?

I am still positive, determined, driven, and passionate about finding ways to get things done. But sometimes I get tired because of all the extra work that goes in behind the scenes – work that most people aren’t even aware that I’m doing – and today I decided admitting that this extra work wears me out sometimes is perfectly ok.

If you’re looking for other articles about blindness and life as an adult, you might enjoy these

  • My riding story – horse-riding with a visual impairment
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    Author: englishwithkirsty

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    30 thoughts on “I’m tired – the disability reality that people don’t talk about”

    1. Indeed, Kirsty, energy and time are the things our friends don’t realize. It’s hard to explain without feeling like we are complaining, which, in fact, we are not. Everything takes longer. As such, it consumes more energy. You are by no means alone , and I’m glad you shared your feelings.

    2. ‘Why don’t we talk about this?’ Exactly. Thank you for writing this, Kirsty. It’s so important for all of us to admit that it’s OK not to be the strong one all the time. It’s wearing, and it’s unnecessary. You’ve made me see things differently through so many of your posts and through the help you’ve given me in other places. Thank you!

      1. Thanks for your comments and I enjoyed reading the post that you wrote in response to this. You’re right – it’s totally unnecessary to put all this pressure on ourselves to be strong all the time. I don’t think I would have admitted this in my 20s when I still felt I had something to prove! Now I’m in my 30s, I’ve got a different take on what’s important!

    3. well, I for one am glad that you revealed a little of your inner workings xx I know I have said this to you before, but I love how you educate me and make me more aware of how life is for you. I find it wonderful that technology is making things a little easier for you. I also struggle to reveal too much of myself publicly, and one of the things that frustrate me is when people who over share and tell everyone their every emotion, declare themselves as “keeping it real”, almost indicating that those of us who are a little more private, are in some way living unreal! Well, you and I both know that the shit life throws at us is VERY real, but we just choose to deal with it in our own way. Another great post, and its made me think! xxx

      1. Thanks for stopping by and commenting. I thought you would get it. I remember reading your post when you were talking about your children and you said that you didn’t usually like to put too many details on the blog about the really personal stuff. The “keeping it real” gets me as well – ok it’s not trying to paint an instagram-perfect life, but how someone’s feeling can’t be measured by our social media output, because some of us aren’t comfortable with that level of openness to complete strangers. Sometimes I don’t even tell my friends until after the event and everything’s sorted. That’s maybe something to work on. But in terms of blogging, whilst I think people will get bored with a load of generic posts, you can still put a lot of authentic content in without telling everyone your life story or the worst things that have ever happened to you. XXX

        1. I totally agree. Well my lovely, you and I are as real as anyone else, but a little more private. That is not a bad thing with all the craziness that goes on via the internet! xxx

    4. I really enjoyed your post Kirsty and as someone who has loads of health issues, I may not know what it’s like to be blind, but I do know and get what you are saying. I am touched by your post.

      1. Thank you. To be honest I wasn’t sure which way this would go, but I’m happy that people have got what I was saying – people with a range of disabilities or health issues. I’m glad we can talk about this XX

      1. Yeah, I need to do better at that! Maybe this post will hold me accountable. It’s the exception rather than the norm though – on Friday it’s back to product empties 🙂 Thanks for reading!

    5. I have nothing to add to this. Brilliant article. I can especially relate to the part with the commute to work. On top of that my work is not accessible with screen reader and I struggle with magnification. I do less work than everyone else and everyone says I m doing great. But I m exhausted at the end of each day. Also agree with picking your battles. Otherwise it is easy to become a very angry and bitter person.

      1. I agree. I’ve seen people who have become bitter and whilst I can understand it to some extent, it doesn’t make the problem go away. It just makes it harder for the person and those around them.

    6. Even Super Girl has to take off her cape sometimes in order to wash it. So it’s ok to take a break from all the hassles of the daily grind. I need to do that sometimes, and I have the benefit of being able to see these hassles so I can move out their way. I actually “hid” behind my blog for three years before I shared it with friends and family. I just didn’t want to deal with talking about it “face to face” with anyone before I was ready.

    7. Oh Kirsty you have really done this issue proud. Well done.

      I also know exactly what you mean, with all of this. I haven’t written about my condition, but it leaves me exhausted- as you say, not by doing a task specifically, but by the other layers of difficulty that pile up on top. I think of them like paper, each one might be fairly light on it’s own, but eventually you end up carrying reams of the stuff, and that’s heavy!

      Tiredness is my biggest hurdle, even more than pain, it’s energy sapping.

      I am so glad you wrote this xxx

      1. Thanks so much. I like your analogy with the paper. That’s why it’s sometimes hard to be specific about what’s wrong – it’s not just one piece of paper. None of the pieces of paper on their own make you feel overwhelmed, tired, or like you want to cry or throw something. But all together they are heavy. XXX

    8. This piece really got me. Thank you so much for sharing!
      I can relate to this in so many ways, although we have totally different disabilities. You have said it so well.
      I get tiredness, and then I get the other tiredness, the one you speak of. And it’s great to admit we all have stuggles, and they don’t make us weak. But also, we don’t have to always be strong.
      As I type this nobody sees the ‘behind the scenes’, the different kind of effort I have to physically put in.
      Excellent piece Kirsty!

      1. Thank you. I’ve been surprised and also reassured by how many people can relate to this. It’s not specific to one disability. We develop strategies to get things done, but we only have so much energy each day. Different things will cost different amounts of energy depending on the person, but if you aren’t careful, it can definitely catch up with you. Thanks again for your comment.

    9. Knowing you well, I think even writing this and sharing with others is a huge step forward for you. I am so delighted that you have received such positive and reaffirming feedback. 😁

      1. Yes, it took longer to write than many of my others, and I still wasn’t sure if I was going to post it, right upt to the point where I clicked “publish”. I’m glad I did though.

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