Who does the word bedbound belong to? 

I often find that people don’t understand what I mean when I or other people say I’m bedbound. I’ve had people suggest my family members should bring me back to my home city, and worse still people used to tell my ex they should bring me to events. All of this despite knowing I’m bedbound. I think there’s a few factors that cause this. One of which is of course that people find it very difficult to understand that being so ill that you can’t move from your bed is possible, but also I think there are issues with the language that the chronic illness community uses. I’ve been struggling to think of a way of wording this for a long time when initially all I could think of was a frustrated ‘it’s my language dammit’ which doesn’t convey my point very well, or the fact that I’m not trying to portray any ‘iller than thou’ vibes, or to leave other less impaired people without language for their experiences. In basic terms the problem is that people who are less severely impaired than myself (or in different ways) use the only language I have available to describe my experience. This in turn contributes to the fact that when I use this language to describe my own experiences people think I’m less severely impaired than I actually am because they’re using these other people’s experiences as their frame of reference.  This issue is mostly prevalent on social media and in chronic illness circles however I’m sure people use it in their every day life too.

Here are a few examples 

‘I’m bedbound’. I had previously assumed that this term meant spending all of your time in bed, but I have heard people use it in many different ways. The two main times I find difficult is when people use the term to

a) refer to a relatively short term period of illness. For example saying that they were ‘bedbound yesterday’ or referring to a period of recovery time spent in bed following a busy day as ‘bedbound’. 

B) Use the term to refer to the fact they need to spend time in bed as ‘bedbound’. 

To me being bedbound is not a short term state. Some people might be bedbound for a period of their lives and then recovery or relapse in and out of this state, but it is not a short temporary state. Using the word bedbound to describe this experience makes it difficult for people who are bedbound to express this without people assuming that it is a very temporary state. I do believe there are ways of expressing the experience (which can be a very difficult experience) without using this language. Examples might be ‘I had to spend all day or *insert amount of days’* in bed’ 

B is a little more blurry. At which point does someone ‘qualify’ as being bedbound? However I do believe that some use this language far too easily. To me somebody is bedbound when they are either unable to leave their bed at all, or they can only do so to walk/wheel a very short distance to the toilet a few times a day. If someone spends their time in bed but is able to walk to the kitchen to get food, to the toilet etc then I’m not sure I would personally call that bedbound. I have experienced times myself in the past where I spent days in bed except for going to the kitchen for basic food and to the toilet using my powerchair, but I did not use the term bedbound because this was not a long term experience, and I was not entirely confined to bed. For those who can do more than this I’ve heard other people use some terms that were helpful such as ‘bedbound except for short trips out’, or ‘bedbound 90% of the time’. Nobody should have to justify their own experience in any way but this first point does make it very confusing for others when for example somebody is up and about at events the next day after having been ‘bedbound’ according to social media the day before. 

I’m almost bedbound’

I think there are times when this is very much true for a person but I do think sometimes it shows a fundamental lack of understanding about the experience of being bedbound. I think the main tines I’ve had issues with this has been when people have told me personally this about themselves knowing my personal experience and it has therefore felt like they are relating their experience to mine. It can be very difficult to hear somebody who can walk and leave their home compare their experience as being almost the same as mine because I feel there is a big gap in impairment between this and being unable to stand, sit upright or leave bed under any circumstances. I went rapidly from spending most of my time in bed, using a tilting chair and requiring a lot of care right down to being bedbound, barely able to move and in total darkness. Trust me these experiences feel worlds apart, and even now when  I am much more cognitively able and have more movement, my current experience still feels worlds apart from the days of needing to spend most of my time in bed and feeling repercussions when I didn’t

I’m completely bedbound.

I started using this phrase myself to make it clearer that I cannot leave bed at all, but I’ve heard other people use it who can leave bed. I don’t understand the need to add completely as well as the word bedbound of you’re not literally ‘completely’ bedbound. 

‘I’m 100% bedbound’

This has been  another of the phrases I have used and it can be very helpful as well as being usable by other people to describe that they spend a significant amount of time in bed (varying the numbers). However I have heard people use this phrase when they are not 100% bedbound thus making it harder for me to explain my experience. 

Another similar phrase I have heard other people use is 

‘I have *insert number* hours energy each week’ or ‘I have the equivalent of about *insert number* of days activity to a healthy person’s week’. 

This can be a very useful way of explaining your experience to others, but I  feel sometimes people choose an arbitrary low number, or perhaps they are describing the number of good hours (without specifying as such). To put it another way, if someone says ‘I have 10 hours energy per week’ but they are able to prepare meals, walk, complete self care independently, and sometimes leave the house then next time somebody else comes along who can spend no more than 10 hours a week doing any activity whatsoever except lying in a dark silent room tries to explain their experience using this language, people may not realise they really do mean it.

I’m out of spoons’

I know of people moving away from this theory for various reasons, one of which is that people use ‘out of spoons’ to mean different things. For example some people have an impairment that relates to one specific function, or that is non systemic for example arthritis in one joint. Use of ‘I’m out out of spoons’ could range right from ‘my ankle hurts’ to ‘I can’t walk any further’ to ‘I cannot do anything but like in a dark room in silence’. People can also use it to mean that they have ran out of the specific amount of energy for the day. It could mean if they go any further they will start to feel unwell, or that if they go further they will begin feeling more unwell. It could mean that if they do more they risk damaging their body. It could mean they’ve used all their energy with reserves to spare, or it could mean they’ve used all their reserves and will suffer for having done so. In this way the problem with common language is when people mean such a diverse range of things.

I think part of the problem is that we have a real lack of language to explain our experiences. It might be really helpful to have one word that explains the need to spend a lot of time resting in bed, but I don’t think the answer to that issue is to use the only way someone who can’t leave bed at all has to explain their experiences. The irony of this is that I actually hate the word bedbound! This is largely due to its similarity to ‘wheelchair bound’. Though there is a distinct difference in that where as nobody spends 24 hours of every day in their wheelchair, some people do spend 24 hours of every day in bed. Really we should not have to justify ourselves at all, but it can be very important to have the tools to explain to people that you can’t leave your bed or home when trying to receive support whether that be to a support worker, on a benefits form, or to friends and family who might otherwise not know how to support you or worse still simply not understand why you’re no longer attending events or trying to hang out with them.

The message id like people to take away from this blog is to think about the language that you use, and whether you using these terms will leave someone more severely impaired than you without the language they need to communicate their experience which can be very isolating indeed.