If you’re living with an invisible illness, you’ll know that dealing with the symptoms is only half of the battle. Because on any given day, you could be confronted with anything; from a base level ‘shitness’ that whirs on in the background to the whole shebang of (not so lovely) symptoms that render you useless and completely out of action.
But what’s even worse than the volatility of the condition, is what it feels like to be unheard by those closest to you.
You’re just tired…
As an empath, I had always cared about the opinions of those around me. So when illness hit, the dismissal of others was a hard pill to swallow. At that time, my days were split between work and bed. Just walking five minutes from the train station to my house became a struggle – I felt like I had a ball and chain strapped to my ankles, pulling me back. My body was heavy and the only way I could describe it was as though weakness was coursing through my blood.
But, it felt like no one understood. And because my symptoms were often invisible comments like ‘Oh you’re just tired’ were not unfamiliar to me. The classic, “but you don’t look sick”, and “Yes, I’m tired too” or even “it sounds psychosomatic to me,” were often reeled out unwittingly.
Although made in innocence, the reality is, these comments hurt. I still remember the day a family member once said to me, “Of all the things you *think* you have wrong with you…” Turns out I was living with an undiagnosed autoimmune condition at the time. But simply because my leg wasn’t hanging off and I didn’t have the medical records to wave around in the air, I was dismissed and written off as a hypochondriac.
Invisible not imagined
Now there’s a lot I could say on the subject of invisible illness and why these opinions are of course, absolute rubbish. But this is beyond the scope of this post. The one thing I will assert here, is that invisible does not equal ‘imagined.’ Invisible illness is physical, and it is real.
Long Covid and history repeating itself
The real reason I am writing this post, is because, with the onset of Long Covid, it’s like history repeating itself- yet another chronic and invisible condition that is being met with the same disregard and dismissal as all the other chronic issues I continue to work with on a daily basis.
If you yourself are living with this awful condition, please know there is hope. And please know that there are things you can do.
But how do you deal with an invisible illness like Long Covid that is largely misunderstood?
Defend your truth or move forwards…
Well the first thing to know, is as much as we want to defend our truth, sometimes, doing the right thing is about what will serve us in the long term. And as hard as it is to let people believe something you know is not true, defending your illness will not help you move past it.
Neurologically speaking, the more defiantly you step into those conversations; trying to make people understand what you are going through, the deeper into the ‘illness neurology’ you become. If you’re familiar with neuroplasticity, you’ll know that the more we reinforce the neural pathways associated with symptoms, the easier it is for the brain to access them.
Nerves that fire together wire together. And the brain and body are always talking. So in basic terms, this means, the more we ‘exercise’ the thoughts and language of symptoms, the more entrenched we become.
You know your truth
But it’s not all doom and gloom. Because, the very fact that the brain and the body are so integrally connected (in fact, I’d go further and say they are one system working together), means there are things we can do to help ourselves from a brain training perspective.
When it comes to those difficult conversations with family and friends, the first thing to know is: just because they do not understand, does not mean your experience is not real. You do not have to rely on their judgement or approval to validate your experience. You know what is true. You know what is authentic to you. And the more you can step into your own sense of self trust, knowing and confidence, the less you will need the validation of others.
The other thing to know, is there are techniques you can use to help you move past those triggered feelings when dealing with those who don’t understand.
Using mindset to move forward
Meditation is of course useful, but even better than that, training your brain to ‘rewire’ the specific thought patterns is what is needed. And the way we do that, is by consciously asking ourselves how we want to feel in the face of the things that challenge us.
I often talk about feelings like hats. Because we can choose how we feel about something. It might take a bit of work but it is possible to change how you feel. And when it comes to the perceived oversight of others, there are plenty of ‘hats’ that we can wear:
Acceptance: as hurtful as these comments are, they key thing is to recognise they are not a reflection on you, or the way in which those closest to you feel about you.
The reality is, when, as humans, we are confronted with something that we do not understand, the human brain will create a belief to make sense of that thing. And unfortunately for others, the belief to come out of this is often, “If I can’t see the illness, it must all be in their head.”
As hard as it may be, the more that we accept this is just what the human brain does, the more easily we can recognise it’s not a reflection on us. It is simply other human brains trying to make sense of something they have not experienced. And that is okay.
Peace: similar to acceptance, being at peace with the fact that people don’t understand is only going to help you move forwards. Because, neurologically speaking, you are allowing others to have their own experience, just as you are allowed to have yours. And remember, just because they have not had an experience that allows them to comprehend what you are going through, does not mean they love you any less (and yes, I’ve had my own battles with this so I do get it).
Blasé: something a little more light hearted but the ‘blasé hat’ is one of the best emotions or hats we can don. Because when we step into this mindset of, “Ah, whatever” we allow ourselves to let go of the things that are not serving us and move forwards in a much more useful way.
It’s not about what is true, but what is useful
Now if you’re sitting there thinking, “Yes, that’s all very easy to say but it’s not fair that I feel so unheard” – you’re right. It’s not fair. But the question you need to ask yourself is, “Does it serve me to continue being triggered in this way?”
If you have lived with illness / long covid for long enough, you will most likely know all about the fight or flight response, and the role that the nervous system and stress play in exacerbating health issues.
So if, every day, you’re being triggered by feelings of rejection from others, what will that be doing to your nervous system? And, is this something that will help you move past it in the longer term? The answer is most likely no, in which case, are you willing to sacrifice your own health and life for it?
I know. I’ve been there. And it’s hard. But in order to move towards health, letting go of the judgements of others is going to be key in your recovery journey.