Wednesday, 3 August 2022

Life With Chronic Illness

Over the almost-10 years since I started this blog, I have never shied away from difficult topics.

Whether it was talking candidly about my experiences as a survivor of domestic violence, my feelings as the parent of a transgender child or my struggles with poor mental health - there has been little in my life that I haven't felt it important to talk honestly and openly about. Because no matter what we're going through on an individual level, there is always someone else out there experiencing something similar...always someone who will benefit from feeling less alone. I believe passionately in harnessing the power of social media and the internet for that sort of human connection because I know first hand what a life line it can be.

But for the past few years, there is one subject of importance in my life that I have largely shied away from discussing.

Not out of a sense of valued privacy, but a sense of shame. Deep rooted, undeniable shame. 
And although I know that this shame is misplaced and completely unnecessary, as much as I hate to admit to carrying has remained with me just the same. 

But as much as it fills me with dread and anxiety to begin to talk about this subject, I know deep down that it's time - and more importantly I know that it's the right thing to do, because hiding it only increases the stigma and loneliness that so many other people in my position face daily.

The subject I have avoided for so long is that of living with chronic illness and decreased mobility.

For me, the two have gone hand in hand and - over the course of the last few years - my illness and mobility-impairment have become more and more a prominent feature of my life. 

I've lived with chronic illness in various forms for over 20 years now, after being first diagnosed with autoimmune thyroid disease at 18 years old. Since then, as is often the case with autoimmune disorders, more and more diagnoses followed....some I have shared publicly and some I haven't. All of them varying in the degrees that they impact my life.

As these chronic illnesses have taken their toll over the years - changing over time, with symptoms coming and going - I' ve found myself less and less able to do the physical things that I once could.

I've found myself less able to keep up with my young children. Less able to move as freely as I once could. Less able to maintain the stamina that I once could on days out and holidays. The conditions I suffer with come with often debilitating fatigue, and periods of high activity can often lead to days of barely being able to move - which, as you can imagine, has a big impact on things like holidays and day trips.

I've also found myself living with increasing pain and decreasing mood levels. I live with low level pain on a pretty much daily basis now and although I am thankful that I seem to have a high tolerance to pain, the constance of it has an undeniable impact on my mood. 

But the physical and mental load of the constant pain and lack of mobility are just one part of the impact it has on a life. The emotional impact is just as debilitating. 

The guilt that comes from having to say "No" so much more often than I want to when it comes to social invitations or things my children want me to do with them that I just can't manage is oftentimes overwhelming.

The embarrassment that hits me when I'm unable to keep up with people or stop the physical pain from showing on my face.

A few years ago, I went to a concert with my partner. We'd had the best evening, I'd really enjoyed letting my hair down and relaxing - I'd danced and sang the night away without a care in the world - but when we were leaving, as we made our way out of the venue alongside thousands of other people - my legs suddenly gave up on me. No matter what I did, I was completely unable to move them. It was as though the signals from my brain just weren't reaching them, and no matter how hard I tried to move myself along with the crowd - I stayed firmly rooted to the spot. 

It was such a frightening experience, being unable to move as thousands of people made their way around me from all sides. I started to panic, worried I'd be knocked over and trampled. Eventually my partner was able to help me to the side of the crowd flow, and went to get help but even then I felt so much shame as people manoeuvred me into a wheelchair and helped me to leave. 

I know that mobility has no moral value, and that a persons level of mobility doesn't impact their worth in any way. I know that decreased mobility should be nothing to feel shame for. So I hate that I feel this way about it. I don't look at anybody else with mobility difficulties as less-than, so why do I feel this way about myself.

I believe that the honest truth is that my fear and shame is linked more to fatphobia than to ableism.

Because I know deep down that if I was a thin person experiencing these problems, I wouldn't feel the same shame that I do now.

For a number of years now, I have known that I needed more support with my mobility. There have been countless occasions when I've found myself in situations like I did at that concert, where my body has failed me and I've known that the time has come to admit that mobility aids are necessary.

I know that allowing myself to use them would increase my quality of life, and decrease my feelings of guilt. I know that they'd allow me to enjoy my time with my family more, keep up with my children and make memories that I'm currently not able to.

But the reason that I don't allow myself to use them is not because I think mobility aids are a thing of shame, but because society sees my fat body as a thing of shame. Because I know that I would be judged as a fat person using a scooter or a wheelchair. Because I know that people would BLAME my body for my mobility difficulties, instead of considering that perhaps my body is bigger because I'm not able to move as much.

I know that people would look at me with pity or disdain. That they would make assumptions about what led me to need that aid. I know that people would assume that my size is the reason for my lack of mobility, and that my size is what it is because of some self-inflicted reason.

I met another Mum once who had some of the same chronic illnesses as me. She always used a mobility scooter on nature walks with her kids and I watched on with envy as she chatted happily with them while they enjoyed their time in nature together, as I sat out the majority of the trail because my pain was too much to cope with. 

But although our conditions were the same....she was thin. And in my mind, this made all the difference. Although it doesn't mean that she wouldn't face any ignorance, judgement or ableism - it does mean that she'd be less likely to be judged as the cause of her own poor health. 

I've tried over the years to combat these fears of judgement that I carry. I got myself a walking stick and have used it in public a few times. But the one time I challenged myself to keep it visible in a social media post, I was proven right of the first comments read "Don't you think that losing weight would help with your mobility?"

And there it is. The belief I knew all along that people would hold. That I'm struggling with mobility because I'm fat....because the thought that maybe my weight started to increase when my mobility decreased is just too much of a reach, right?! 

I want to be able to allow myself the same freedoms and assistance that others in my position have found thanks to mobility aids. 

And writing this feels like a step in that direction. A small step, but a step nonetheless.

I'm going on a long holiday this year, one which will involve lots of long tiring days and an awful lot of walking...and friends of mine with the same health conditions who have been have warned me that its likely to be a struggle for me.

So I need to make the choice whether to allow my fear of judgement to impact on this holiday of a lifetime, or allow myself to utilise the help and support that's available to me by hiring a scooter and getting as much out of my time there as I can.

I know this fear of judgement is holding me back in so many ways and impacting my quality of life so deeply. 

I just wish there was an easy way to overcome it. And most of all, I wish that people would think twice before they cast their judgements on other people without the slightest thought for the impact it can have.

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