I often write about how hard I find living with my illnesses is. I have Fibromyalgia, PMDD and many off the back symptoms such as allodynia and vitamin deficiency as well as sometimes crippling anxiety. Days are often long and nights longer, and sometimes I worry that life will pass me by whilst I’m stuck in a haze of painkillers and panic attacks.
I often feel guilty about how I portray myself during a flare. I write a lot of blogs and use social media as an outlet, but I’d be lying if I said I felt 100% comfortable talking about my illness. It’s uncomfortable because you know despite your best efforts to explain, people are uncomfortable reading and hearing about it. They don’t get it, until they get it.
It’s great that we are growing as a community and understanding not all disabilities are visible, but there are people everywhere still talking about us talking about them.
However- having lived with these ailments most of my adult life I’ve learned a lot along the way about managing my own expectations along with other peoples. I like to try and find the positives within the challenges and whilst I can’t promise it’s easy, you won’t always have good days, but if you look hard enough, there is some good in every day.
So here are some ‘tips’ (for want of a better word) to living well, unwell:
First, and this one is really important but also really difficult, relinquish any pressure you had put upon yourself to be a certain way.
Your friends from your pre-diagnosis days may not understand and that’s ok, because you are not your pre-diagnosis self now. Trying to pretend otherwise is not only using unnecessary energy, it’s having a negative impact on your mental health therefore creating a cycle of guilt you shouldn’t be feeling because you’ve done nothing wrong.
You are perfectly imperfect and saying "no" is sometimes kinder than making promises your body can’t keep. My mum said to me last summer that I should stop booking to do things as I can never manage it when it comes to it. I don’t advise stopping, you need something to look forward to and that’s ok. But what I do advise is give yourself time.
If you’ve booked to go to a gig, take a couple of days off either side, you know you’re likely to be exhausted after so allow yourself that downtime to recover. Zero guilt, your body needs it and that’s perfectly ok. If you’re diabetic you don’t deny your body insulin, so if you suffer from chronic fatigue or activity induced pain, don’t deny yourself rest.
Accepting my limitations has been a real eye opener in learning to accept myself. It’s not quite rosey yet but the Rose garden is in sight.
Love your body for what it can do. It’s hard some days to see your body as anything other than a prison keeping you caged within its limiting limbs, this is not all your body does. On a good day you may be able to walk unaided, you might even be able to run or swim, or dance at that gig you’ve booked tickets for. This is your body at its best and it’s awesome, this is you at your best. You are awesome. Don’t forget all the great things you have and will continue to achieve despite your illness.
Learn to see the perfection in imperfection. I’m loathed to admit this but in the spirit of full disclosure, until I found myself disabled, I hadn’t really considered a other people’s disabilities. I hadn’t considered invisible disabilities at all really and I had that god awful attitude of ‘you look okay to me.’ How naïve was I, to judge anyone based on how they look?
Given that I’ve struggled with my mental health for as long as I can remember, as far back as childhood, I should of known better but it was only when my physical abilities really depleted that I was able to consider how wrong I was to judge based on appearances.
We are ALL fighting battles, at sometime in our lives we will struggle and it won’t be visible to the outside world. Try and remember this when judging what you consider an ableist to be too. For all we know they could be dealing with something we can’t see. It’s hard to not feel bitter when you feel like the rest of the world is able to do everything you can’t, but compassion and kindness is something we all need more of.
Change your mindset and you could change the lives and minds of others too.
Be a good listener. It’s easy to harp on about how rubbish you feel when you feel rubbish. It’s also good to share how you feel as it raises awareness of our conditions and helps people understand them better, but remember to listen too. Being a good listener is an invaluable skill that will stand you in good stead for the rest of your life. Listen to people how you wish you were listened to. Being a friend to someone in need is not only great for them, it’s great for us too. Feel-good deeds are what the world needs more of. Random acts of kindness are still a rarity, do more of them.
Learning to accept some of this has made the adjustment to living with limitations easier.
I won’t deny that it’s difficult not to feel angry and bitter during my worst days, but on the days it doesn’t feel like being alive is tantamount to climbing such a huge mountain, hold on to those small victories.
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