Daily living, work and the power of reasonable adjustments

We recently published part 1 – But you don’t look disabled –  where Lauren introduced herself and talked about not looking disabled. Now, in this blog, she’s focusing on work and daily living.

York Ending Stigma Logo: An orange ciircle reads York Ending Stigma with a speech bubble saying "Let's talk mental health"

Daily life isn’t that easy. This may shock you, but I do work. I love my current job and have the reasonable adjustments that I need to work effectively, enjoy my work and leave me with a bit of energy outside of work – this wasn’t always the case but I’m not going to dwell on that. 

I think some people are a bit scared of the word ‘adjustments’ sometimes. Not only that, sometimes you don’t always know or aren’t aware of what you need to help you, not straight away. Without my reasonable adjustments, I probably wouldn’t be able to work at all – they are as basic as having the right desk – a riser desk, a suitable chair (because the standard office ones make my existing back issues worse, so I have a specialist one), and basic things like being listened to. 

In terms of my mental health conditions, in particular generalised anxiety disorder and cPTSD, they are things that others don’t really see the effect they have on me. There are certain triggers for me due to emotional abuse and this isn’t always straightforward. It is disabling for me, and on a day where I may be more tired or something has happened, I can be more affected by the symptoms of both cPTSD and anxiety. This can include hypervigilance – I can’t relax and am “on the lookout” for threats constantly. It isn’t a good feeling and can easily lead to sensory overload if I don’t spot it early enough.

Work adjustments aren’t just physical

Being autistic isn’t a disability, for me anyway, but under the Equality Act 2010, it is a protected thing. I see it as being wired differently, and this can cause me issues in conversations and with social anxiety, I have experienced sensory overload and on occasion become non-verbal. I do have communication cards (Stickman Communications) which are a great reassurance tool for me when I need them. Autism for me means I need straightforward instructions and to be told step by step, but I have never seen this as a problem…not for me anyway!

Anxiety is almost a constant presence in my life, and I only recently started to see this as a disability. An anxiety attack or panic attack aren’t always visible, and they are debilitating, energy draining and, in that moment, utterly terrifying. Anxiety isn’t visible but it can have physical effects and has stopped me from doing a lot of things in life. Almost like a physical barrier, except with spiralling and sometimes uncontrollable thoughts, with worst case scenarios that won’t ever occur. The best way to describe it as an experience is like feeling you want to run away but your feet are suddenly concrete blocks superglued to the floor and thoughts are swimming all around you.

“Please ring us”

At one point I was almost unable to leave the house due to anxiety almost taking over my entire life. Social anxiety is incredibly difficult to live with. I always think people will laugh when I say this, but am usually pleasantly surprised by the reaction – I am terrified of phone calls. I’ll happily avoid making one wherever I can, although I do feel slightly better about receiving them. I try to not avoid making them, but I really don’t like the overall experience and frankly it drains a lot of my spoons*. This creates a barrier that can have a huge impact on living. For example – should you ever be in a mental health crisis, there is currently no other way to get in touch with the crisis team other than to phone them, you often have to phone the doctors surgery for essential appointments, that kind of thing. I have even worked somewhere that required you to physically speak to a person when phoning in sick – not great when there was no guarantee that anyone would pick up the first time. Added to that was the stigma of explaining why you have issues using phones to call in.

*The spoon theory is a helpful way of talking about energy and energy limiting conditions

Fibromyalgia has been in my life since early 2020, and it causes daily pain and fatigue, so in effect my normal is living with a 3-4 on the pain scale and I have less spoons (less energy) than a healthy person on a daily basis. Fibromyalgia is an ELCI, or energy limiting chronic illness. Again, I’m mostly only able to work due to the reasonable adjustments and have gone from working full time to working 4 days a week. It works well for me personally and gives me the three-day weekend or extra ‘recovery day’ as I sometimes call it.

“If you haven’t got owt nice to say don’t say owt at all”

Living with chronic pain means that if I say I’m in pain, it is really hurting, as usually I’ll try to power through. Fibromyalgia affects most of my body and on top of joint hypermobility syndrome, my joints and muscles can get really sore and fatigued. So I’ll use the spaces reserved for disabled people on buses etc. Unfortunately, I do get disgusted looks, particularly from the older members of the population. These are utterly uncalled for and aren’t helpful from an anxiety point of view, but knowing I have the right to be sat there does make me feel better. But still, why is there so much judgement about being young and invisibly disabled?

Some of this invisibility, as I said in my first post, probably comes from being inside your own four walls on your worst days, or even hospital (not me yet!). I look and feel terrible on days when I’m having a fibro flare,;walking hurts, it all hurts. Yet, I am hardly ever off sick, though there are days where I probably shouldn’t have been in work but that’s my own stubbornness rather than anything else. There’s some sort of perception that disabled people and people with mental ill-health are going to be terrible employees with rubbish sick records and so aren’t given a fair crack. I’ve read somewhere that perhaps on a case-by-case basis, discretion should be applied and these ‘targets’ for absences shouldn’t always apply. Health conditions tend to be a bit dynamic in nature and might not always be the same over time so surely some sense needs to be applied?

Anyhow. Disabilities are not linear, they aren’t all ‘what you expected’ (well I didn’t expect this either but here we are), and invisible disabilities are increasingly common. Living with mental illness isn’t a choice.

Having faced direct discrimination, consistent stigma, and overhearing and seeing some really stigmatising and judgemental comments, is it not time we just started being civil and less judgemental? You cannot see what is going on inside anyone else’s head or their lives, unless you ask them or they tell you, so why not just be a little bit kinder, and think before saying or commenting on something.

As my parents always told me, “If you haven’t got owt nice to say, don’t say owt at all”.

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