What to do when nobody knows what’s wrong with you

24th April, 2017   |    By Bethwyn   |    5 min read

Hi there! The title of this post may sound pretty gloomy and… maybe even a little judgemental now that I think about it, but for those that have read previous blogs of mine, this is just a continuation of one of my main topics: chronic illness.

Sometimes in the course of our lives, we start to get persistent symptoms that interrupt our daily lives. Often they can start out super small, but if we ignore them, they can get bigger and more present until it feels like our body is shouting at us to DO SOMETHING. And that’s when (hopefully) we head to the doctor to find out what’s going on.

And sometimes, we will be sent for routine tests – blood tests, maybe an ultrasound or a scan of some sort – just to ‘check’. And then those tests come back ‘normal’, when we are still feeling anything but.  And that’s when we have to confront something we may not want to – not only do WE not know what’s happening to us, but our doctor doesn’t either.

This can be terrifying. We assume that our doctors are the people that will heal our every (physical) hurt and will be there to tell us what is happening in our own bodies when we can’t figure it out. And it can be so hard to come to terms with.

But, in the end, the doctors are (again, hopefully) doing the best they can, and sometimes that means admitting that they don’t know what is going on.

I have had many tests in my time as an ‘ill’ person, let me tell you. I have been shuffled between blood tests, ultrasounds, scans of my brain, even the occasional hospital visit or appointment with a specialist. And many of them (read: almost all) have come back saying I am perfectly fine. But if you were to sit me down and get me to explain all the things I deal with from day-to-day? Well, we’d be there awhile. You might want to fix some tea.

I wanted to write this post for other people going through a time where they’re being shuffled between desperately wanting an answer and overwhelming insecurity after someone even HINTS that it might be ‘all in your head’. But I also wanted to write this for myself, as I am back in that system right now, and awaiting a specialist appointment in the coming weeks.

It can be hard not to slip into the darkness of not-knowing when going through something like this. Each test or appointment can be a beacon of hope – something you come close to not allowing yourself as time goes on – that maybe, just maybe, this time someone will find out what is wrong with you. And then, if it doesn’t work out that way? Crushing disappointment, and that ever-present fear come back to you.

I am in that place right now – this next appointment could mean a new chapter for me, or it could mean going back to wondering what exactly is going on in my own body. I am allowing myself a little hope, but not too much (if that makes sense), because it could mean having to get upset again that nobody knows what’s going on. It could mean more tests that show me nothing other than a supposedly healthy body.

But I like to think that this time, I am looking at the situation with a little more wisdom under my belt. Yes, I may get a diagnosis, and that might be scary or amazing or a bit of both. Or, yes, I might get another puzzled look and vague suggestion of how to feel better. Either way, I’m still going to keep trying to live my life. I am still going to be me.

It can be really frustrating trying to see continuity when something huge is happening in your life, or about to happen. You see that test next week, and you see nothing beyond it. You look at that appointment coming up tomorrow and you focus so much of your attention on it that you can’t focus on anything else.

When I get stuck in my head about these things, I connect to the most basic thing I can – in fact, the thing I try to connect to even when I am feeling at my worst. I focus on my breath. Because the breath is the thing connecting me to this world – every inhale and exhale keeping me on my own path. Something I can sense and hold onto even when other things make no sense. And I just keep focusing on that until I can see that there is an ‘after’. There is a continuation to all of this.

Because, as long as I’m breathing, you can bet I’m going to be trying to be true to who I am. Chronic nameless illness or not, I am still going to keep going.


Also check the related topics:  

Chronic illness

Add Your Story