Between The Sheets – #truth #advocacy #bedridden #disability #honesty #write #whatitfeelslike #autoimmune #chronicillness

For those who have never actually been around someone chronically ill or nursed someone with various debilitating diseases, the idea of being bedridden to the average person sounds like a lovely holiday. Sitting around all day. Sleeping. Not having to go to work that day. Idyllic.


In fact it only goes to prove how misguided and misinformed the ‘average person’ is if that is the picture that comes to mind. The thing that they clearly and obviously overlook is WHY you are in bed in the first place.

For those of us who are bedridden, either briefly or extensively, it is a living nightmare. One which many people can’t really understand and so often those who are bedridden wont try to explain it. It can be more difficult than trying to describe what clouds smell like.

Some of us try to explain it by asking people to imagine a time when they were in bed with a bad flu, and sometimes you are rewarded with a pained expression which indicates that the person may have had a flu and not liked being in bed for several days. But truthfully this doesn’t even touch the sides. It is like trying to compare a  leisurely walk down the end of your street to running the London Marathon. Which is probably why there are so few posts about the struggles and difficulties of the bedridden. It’s just so hard to express and most people don’t really want to think about it anyway.

When asked to imagine the life of a bedridden person, people will also tend to picture an older, infirm person, sitting in bed with a cup of tea and a biscuit. This is only a portion of the bedridden community. There are the Autoimmune, disabled and Chronically ill people who have been forced into this state through no fault of their own and often while they are still very young and in the prime of their lives. Life feels as though it has been snatched away and the feelings of despair are palpable.

Spend a day in the company of people, like myself, and you will quickly become acquainted with the heart breaking truth of it. We are not having a party at all. We are not here because we want to be here. We aren’t having fun. I can not even remember the last party I went to; not even my own. We would give anything for the chance to be physically able to do the most menial of jobs. Yes. Truly. I told my GP I would happily have a limb/s amputated in order to have my life back. She seemed strangely shocked by this admission but that’s what 10 years of full body pain and about a thousand other symptoms will do to you.

This is not a gig for the faint hearted. If you think you have suffered by spending some time in hospital, going through a divorce, going through job loss, losing your best friend, having the hangover from hell or the death of a loved one well put all these events together, line them all up, load them into one barrel and you will start closing in on what the reality of life is like for us. We face all of those challenges and feelings every day, all day and all night for the rest of our lives.

Its not easy to try and put yourself in those shoes, which is why people don’t tend to try. For example, how often do we see the suffering in small, unheard of places on the map and think “there MUST be some simple answer for all this… it can’t be as bad as all that.” Because people don’t want to, or can’t imagine that sort of suffering or event, people tend to try and construct mental blocks to truly identifying or understanding the type of suffering and pain involved because it would be too much to bare. So people don’t look. People judge. People start to imagine some alternative reasons or forming suspicions about it all. For those people I don’t think anything I write would make a tiny bit of difference. To those people I doubt they would even read this post or care who Autoimmunitygirl is.

But then there are the ‘others’. The ones that I do care about. The fellow sufferers who deserve to have their pain spoken of and acknowledged. The friends, family, acquaintances who DO care and may have come across people with Autoimmune diseases and chronic illnesses and had their eyes and hearts opened. I write for them; as a tribute to them. I write in the hope that if more and more people can be made aware of the reality then maybe some researcher somewhere, some scientist, some pioneer might be encouraged to find cures and answers to allow us to reclaim our lives.

In the meantime, at the very least, I hope it will alert people to the reality that life of the bedridden is anything but a 5 star experience and every day that you go about your daily activities remember that there are hundreds of millions of people who languish in a state of medical limbo who are neither living ‘life’ as most people can and neither are we dead.

I can remember someone telling me one day, in a moment of frankness and honesty, that [they] would rather die than exist like me. I took no offense at this, in fact I commended [them] for their honesty and after a long pause I remember saying that sometimes we exist in the most awful of circumstances and in the darkest of places, not because we want to, but because its just too hard to say goodbye to the ones you love. Sometimes we don’t ‘live’ for ourselves or our own reasons, but rather we live so we can love someone and be there for someone for just one more day but there is a high price we pay to do that.

Gentle hugs,


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