I have a few things I want to unpack, process and document tonight, but I won’t be able to get through them all. I was planning on waiting until I had a clear mind but I am struggling to sleep – I am feeling quite sick and the pain throughout my body is not completely deliberating at the moment but very unconformable. So I thought I would process some thoughts on pixels to distract myself and hopefully bring some understanding to a really complicated communication problem.

I titled this post ‘take me seriously’ because I have been reading a lot of articles, forums and blogs on chronic and invisibles illnesses the past couple of months. A reoccurring theme throughout this literature is the common struggle that people living with invisible illnesses have; feeling that their severe health condition is not taken seriously and that others think they are a ‘phony’. This is obviously an incredibly complex problem, influenced by a number of external contextual and situational variables, communication efficacy and internal psychological processing – but I want to have a crack at unpacking the situation to hopefully bring greater clarity to what I believe is the root of the problem, communication.

There are times where I don’t always feel that my condition is understood by those around me (and I don’t blame them for that, I don’t even understand it!). Being completely transparent and vulnerable, I have had days where I have been upset because I have felt really isolated because well meaning people have said things along the lines of “you’re looking a lot better” or “you’ve got more energy today, you must be on the mend”. Initially, these comments have shocked and hurt me because I didn’t feel seen: on the inside I have felt absolutely disgusting, miserable, in constant pain and exhausted (this is major communication noise, my knowledge of how I feel has manipulated how I receive these comments). Without acknowledging the presence of my communication noise, I could get upset at these people for being ‘so insensitive’.

But the reality is that the people weren’t being intentionally insensitive at all!

They were understandably relying on visual cues and outward symptoms that often help us all assess someone’s ‘sickness’ – unfortunately these aren’t always present or noticeable with an invisible illness.

For example, if you were to look at me at the moment you would have no idea that I am utterly exhausted of energy, my chest is tight, my throat sore, my stomach on fire and my joints are swelling. On a quick visual check alone I would probably walk past myself and not realise just how sick I was – and that is the problem.  People with invisible illnesses look ‘healthy’. Unfortunately, the surface is calm (what other’s see), but the undercurrent is a raging torrent (what people with an invisible illness are experiencing).

I believe communication is key to reducing misunderstanding in this situation. Communication is not uni-directional and thus everyone involved needs to be listening, discussing and taking responsibility. For me, I need to be intentional about verbally communicating how I am feeling. Sometimes this is hard because trying to articulate my condition and express this in a way that will be meaningful to others is tough because communication can rely heavily on empathic understanding. But it is critically important that I try, because I can’t expect the people around me to pick up on the subtle indicators that I am crashing or for them to see my daily pain, exhaustion or sickness.

It can be really tough to know how to support and communicate with those living with an invisible illness. I fully appreciate that!

It can be awkward sometimes hey! So here are some straight forward thoughts for encouraging people with invisible illnesses:

  • Give us a hug. So many powerfully unspoken words are communicated through a hug.

  • Ask us about what we’re passionate about. Our lives are dominated by our illness. Sometimes it is all we talk about (which I appreciate can be tiring) and other times it is the last thing we want to discuss (confusing hey!). So let us both try and be intentional about talking about each other’s passions when the time is right. We can go weeks without seeing anyone – so conversations are exciting!

  • Appreciate that we live in a deep exhaustion and that our energy is unpredictable. This doesn’t mean you avoid asking us to do things or invite us to events. We want to be involved, we want to participate, but sometimes it just isn’t possible and we won’t know until the time comes whether we’ll be able to manage it (or try). If we can’t make it, or we’re late or have to leave early, be patient and try to understand. We’re devastated and frustrated too.

I will continue to add to this list, but it is getting pretty late and I am not feeling very well. I will continue to unpack this when I can.