Great Expectations.

When I first became ill, one of the biggest hurdles for me mentally was the loss of control over the things that existed in my life. Things that once were routine were suddenly uncertain. Things like work, finances and living independently were all taken for granted up to that point.

It took years for me to establish a new way of living that gave me some of that control back. I learned what to expect from my daily life and said goodbye to people and things that no longer served me. I learned what made me feel worse and what made me feel better. In time, a new routine was established that gave me some feeling of stability and control over day to day things.

The hardest lesson for me, and one that I still haven’t mastered, has been learning to accept that we can’t control the behaviour of others.

Sometimes, other people will have a negative impact on my emotional or physical wellbeing and I need to try and adapt my own behaviours to mitigate the consequences of that.

I can think of many times over the years of being ill where other people’s behaviours have made me feel worse, either with increased pain and fatigue or heightened emotional stress that inevitably leads back to increased physical pain and fatigue.

Things like, text messages sent to me early in the morning that disturb sleep, tradesmen calling at the house at a different time than we’d arranged, noise disturbances from neighbours at unsociable hours, short notice changes to activities that mean me being out of the house without adequate preparation time, being involved in other people’s unnecessary dramas etc etc…..

I’ve come to realise that a big part of the problem is one word, EXPECTATIONS.

At the beginning, when you’re suddenly ill, people tend to be understanding and won’t expect much from you whilst you recover. Fast forward a few months and those expectations start creeping back in. That’s enough recovery time for you, life goes on, people become less tolerant and more demanding of your time. We aren’t meant to be sick for this long!

Friends invite you to do things and expect you to be your normal self. There’s pressure to respond to text messages in a timely manner and an expectation for you to show up if you’re invited somewhere. You can’t still be sick, right?

Employers say they’re understanding, if only you’ll return to work they’ll make it as easy as possible for you. Those amended duties soon to be filed in the bin when they inevitably realise you aren’t as productive or reliable as you once were. I was told I had to be a “team player” which to them meant an equal share of tasks regardless of my physical capabilities. The boundaries I’d set before returning, soon dismissed by them as no longer necessary.

Family expectations can also be difficult to manage. Needing to rest alot can be seen as lazy, struggling mentally can be seen as having a negative attitude. A lack of understanding around the choices you make can result in you being told “you’re not helping yourself.”

All this expectation can leave you feeling like you’re a failure.

On top of that, you’re angry at yourself for not meeting your own expectations. Why are you not coping well enough?

For me, personally, something that has helped me immensely has been to set clear boundaries, both with myself and other people.

Allowing myself to say no has been one of those boundaries.

Learn to say no to people without feeling guilty about it.

You know your own limits, not them. Just because you did something once there’s an expectation for you to be able do it again. Yes, perhaps you can, but it has to be on your terms. You should decide when you feel well enough to do something and be allowed adequate time to prepare knowing you’ll have to deal with a temporary worsening of your health immediately after. It’s your choice if you are willing to deal with the consequences of that.

For most people, agreeing to something they feel obliged to do won’t come with consequences to their health later. Perhaps its a bit annoying for them, it might mean giving up a bit of their time or might result in them spending money they may not have otherwise spent, but if it negatively affects your health then it becomes a more serious issue. Saying no can be an act of self care and shouldn’t be thought of as a negative thing.

Another valuable lesson I’ve learnt is to be very clear and firm when communicating your needs when dealing with businesses and trades.

Many times I’ve asked businesses not to call in the early hours, only to be woken in a fright by my phone ringing. This causes me to spend the rest of the day feeling nauseous, dizzy and badly fatigued. Whilst I don’t want to have to disclose private health matters to businesses, it often seems necessary in order to avoid such consequences. So now, I give precise times that I don’t wish to be disturbed and I explain that it’s very important for health reasons. Ironically, the one place that doesn’t seem to take much notice is the doctors, and if tradesmen ignore my request then I simply find someone else to do the work. They are working for me and not the other way around.

Lastly, one I still struggle with….asking for help.

Sometimes there’s an unspoken expectation for me to do something seemingly minor, but something I know I’ll struggle with. Perhaps there’s a long queue at the shop and I’m expected to wait in line, maybe the door at the shop is really heavy and I know it’ll hurt my arms to try and pull it open, maybe the cashier desk is closed and I’m expected to use the self serve. As a disabled person I’m met with lots of different challenges whenever I leave the house. I often feel uncomfortable asking for help and am fearful of being judged because I look perfectly OK and don’t want to appear to be lazy or difficult. Many times I’ve felt pressured in the moment to do something that’s caused me physical pain later. Learning to ask for help is something that can make a huge difference.

Do you have any boundaries you set for yourself or other people?

Feel free to leave a comment.

Photo by Jamie Templeton on Unsplash