Monday, 4 May 2020

The Side I Haven't Shown: Living With Chronic Illness



I've shared aspects of my life online for a number of years now but to this day, I'm still surprised to realise that people assume they're seeing EVERYTHING when they follow someone on social media.

The truth is that it's pretty easy to curate a feed or a blog to show only certain aspects of life, and not only is it easy to do - it's also very common. There is a lot going on behind the scenes in my own life that is kept private. I choose what to share and discuss on my blog and social feeds, based on what I think is important and what I feel comfortable with.

One thing I've kept pretty quiet about on this blog (aside from the odd occasional post) , is my health issues. Although it may not be immediately apparent to the casual observer, the truth is that good health is something that has eluded me for the entirety of my adult life.

Having been diagnosed with my first autoimmune disease at 18 (and a collected a number of others since) I can't really remember a time when my day didn't begin with taking a myriad of medications or when my diary wasn't filled with endless blood tests and hospital appointments.

From violent tremors and hair loss, to intense headaches and all-over chronic pain - the list of symptoms is too long to even begin to list here but for over 20 years, I battled against my body in order to try to keep things as normal as they could be. Nobody wants to allow their poor health to stand in the way of fun and enjoyment in life, least of all an 18 year old excited for hers to really begin. So I did my best not to let my issues stand in my way and for quite a long time I felt as though it was a battle I was winning.

My life was, if you'd have asked me then, largely uninterrupted by my health conditions. Yes there was the occasional middle of the night trip to A & E with worsening symptoms, even the odd ambulance ride here and there - but on a day to day basis I was managing to keep my life looking the way I wanted it to. Full of the things a young woman usually enjoys - nights out clubbing with friends, shopping trips, college and holidays.

I thought I was managing well, and maybe I was - or maybe I just wasn't paying attention to the many warning signals I was being sent by my struggling body. The higher-than-average number of infections and illnesses, the sudden flare ups of new and worsening additional health conditions, and the one big stumbling block - my continued absences from work and lack of ability to maintain a good attendance record.

Looking back, I blamed myself for my lack of ability to hold down a job and saw it as a huge personal failing that I was in and out of work so much, hopping from one employer to the next every 6 months or so. I beat myself ferociously with that particular stick for years without allowing myself any sort of reprieve for just how difficult my health conditions made it for me to stay employed.

Although I did manage one period of staying with the same employer for several years, things remained difficult to manage with constant disciplinary hearings to shame me for the time off sick that I simply couldn't avoid - until eventually I found a way to support myself and my family from home, in a role that I could manage around my illness. This was the biggest of blessings, enabling me to maintain some independence and giving my mental health a huge break.

However, in the last couple of years, things with my physical health have worsened to the point where even the most mundane of everyday tasks have become a struggle.

The pain I live with every day has become almost unbearable, and the effect it and my other symptoms has on my abilities has been massive.

The truth is I can no longer stand up for long enough to even peel potatoes for dinner without screaming pain in my back and arms bringing me to tears. Doing a task so seemingly simple can leave me barely able to walk properly for days.

I can't stay down on the floor for long enough to finish playing a board game with the kids, without my body crying out in pain and forcing me to have to move again - something which always makes me feel so incredibly guilty.

And there are many, many more days than I'd like there to be where I can barely wake up and function properly. Where just the simple act of getting out of bed is a stretch too far, and even when I eventually manage to - I'm exhausted and zombie-like to the point of tears for the entire day, sometimes more than one day.

I can rarely sleep well and when I do, I find it hard to wake. There are very few days without pain now, in varying degrees.

Yet for some reason, I feel such a deep sense of shame and embarrassment around it all that the vast majority of people in my life wouldn't even know about this.

That innate desire to "Put a brave face on" and "Just get on with it" is so strong, It's something we're subconsciously taught from a young age - a byproduct of living in a capitalist society perhaps, where the feeling of not being completely able-bodied and useful at all times leaves us feeling worthless and inadequate. As though we're not trying hard enough, as though this is something we could be rid of if only we could dig deeper and muster some more fight.

Because of these feelings of worthlessness, I've kept the situation I'm in largely to myself. Struggling even to let those closest to me know just how difficult things are and how bad they've become.

But doing so really does only make things worse.

I'm constantly faced with additional guilt at my lack of desire to share what goes on behind closed doors here on my blog, where people see so much of what I do in my life but with huge aspects left out and kept quiet.

I suppose the reason for that is not wanting to admit to how difficult things are to myself as much as to anyone else, not wanting to bring people down by discussing it, and also the knowledge that there are those who take pleasure in the suffering of others and who wish to mock and naysay.

But the more this goes on, the more I've come to realise that it's not right to keep this side of my life quiet whilst sharing so much else. It's not fair to those in similar situations not to be honest about the way things are, and it's just not truthful to show only the positives in life.

So the truth is - I'm really struggling -  mentally and physically. I'm living with extreme chronic and often debilitating pain on an almost daily basis. And for the last few months, things have been become so bad that I've had to use a walking aid to get around most of the time.

I've struggled with my mental health more than ever before - probably because of those feelings of worthlessness it brings, and the struggle to accept that my independence is far less than it was before.

I can't begin to explain how awful it feels to have to use a walking aid in front of people you know for the first time - having to field the "Oh my god what happened, did you injure yourself?" questions and explain the story of your failing body again and again to people. Having to deal with the sympathy which makes me feel embarrassed, or the doubtful "is she being dramatic" looks that make me want to scream.

I've had moments of bursting into tears when friends have asked me to do simple tasks that are now beyond me, because I can't bring myself to tell them I can't do it and be thought of as lazy but I also can't stand the pain in puts me in.

I've had moments of so much shame and frustration trying to maneuver my way through the centre of London with my children while using my stick and trying to hold their hands at the same time, crying in pain. Then having to spend an entire day in the hotel bed unable to move while they cry because they're missing the activities we'd planned. The guilt is crushing, and there have been so many occasions when I've thought they'd be better off without me holding them back on holidays and day trips.

On many of the days out we've had at theme parks which I've shared on here, one thing I always made sure to keep out of the photographs was the wheelchair I have to use most of the time to get around those places. Our trip to Puy Du Fou last year brought particular low moments - trying to navigate the up and down hill crowded park in a wheelchair was anything but enjoyable, and cast a shadow over what would have been such an amazing trip otherwise.

On the family holidays we've taken, I've relied heavily on the sunflower lanyard provided by airports to make queues more manageable and I've spent most evenings of the trips in tears at my lack of ability to do all of the things Id planned to with the children because my body just couldn't handle it.

The Disney World holiday I've booked  fills me with as much dread as it does excitement, because I honestly don't know how or if I'll be able to manage it. But I also feel determined not to stop trying yet and instead to try to find new ways to make these holidays enjoyable even if in a different way than I'm used to.

As my physical health has declined in recent years, my mental health has gone with it. My ever decreasing lack of ability to get around freely has added to an increase in my weight, which brings with it weight stigma, judgement and additional shame. Even as someone with knowledge of diet culture and health bias, it's still difficult to handle the uneducated opinions that people feel the need to share and the judgemental eye that you feel being cast over you as a larger person using a walking aid - knowing that the link between the two is not as people perceive it to be. That's its not your weight contributing to your lack of ability, but rather your lack of ability contributing to your weight.

Simple tasks require help and support now, and I despise the feeling of relying so heavily on others.

I hate how often my children have come into my bedroom to find me crying in pain, how often they've had to hear me tell them that I can't do certain things because I'm not well today.

There've been so many occasions where I've pushed myself to do things that are completely outside of my abilities because I haven't wanted to let friends down or tell them that this simple walk we're on is far too much for me now, and I need to stop to rest. Just asking for those sorts of allowances to be made gives me feelings of  absolute dread and shame.

I'm constantly worried about getting the balance right between letting people know that I need help with certain things, and not being a burden or a drain. Not wanting to act as though my problems are the worst in the world when I know they're not. There is so much that I can still do, and there are so many people who have things so much worse than me. But knowing that doesn't make these changes any less difficult to handle.

People tell you constantly to talk about your feelings, to get them off your chest - but the moment you do there is always someone there waiting to tell you to stop bringing other people down, to stop acting as though you've got it worse than anyone else, to stop moaning. All of which does nothing but drive your mental state down even further.

I've come to realise over the last year or so just how rife ableism is in our culture, and how poorly those with less physical ability are treated....Just how little people want to know about things that don't personally impact their lives, and just how false so many of the calls for kindness and mental health support are....

"Stop complaining and feeling sorry for yourself, don't be a burden"....
And when it all becomes too much..."If only they'd talked about it, if only they'd asked for help...."

We're always told that our real friends will always stand by us and offer support, but it's amazing how quickly friends that you thought would care end up going quiet when the conversation turns to something as awkward for them as your declining health - mental or physical. The truth is, very few people actually want to hear about it - even if they say they're there for you. Saying it and meaning it are very different things, I've discovered.

The point of writing this post was not for sympathy, but rather it was a cathartic exercise to clear my mind of these thoughts and worries - as well as opening up the conversation around ability and accessibility,  dealing with health shaming and feelings of inadequacy. Because I'm tired of feeling shame for my health - I'm tired of cropping walking aids out of photos, and never discussing the additional trials of parenting with differing levels of ability. I've always shared honestly on my blog about the things I've experienced, and I don't want to stop that now.

For a while now I've wanted to share my thoughts on the accessibility of places we visit, in the hopes it may be useful to people but I can't do that until I admit that accessibility is an issue for me.

And so there we are.

This is how life looks and feels right now. It is what it is, and It could be so much worse.



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