When they diagnose you with a chronic illness there’s a whole heap of things they don’t mention.
The long-term effects on your relationships and friendships don’t come up, neither does the complex issue of you looking normal when you’re really rather unwell.
One thing that I certainly did not predict was endometriosis’ effect on my mind – more specifically how years of chronic fatigue would start to affect my cognitive abilities.
I’m finding my memory loss is causing more and more problems and getting people to take in how scary and bewildering it is surprisingly difficult.
It crept up on me slowly at first. A lost thought here and there, mornings where I lost or forgot things more than normal. Now when it’s at its worst my mind fumbles for the right words when I am talking. I lose whole sentences in my head. I start a discussion and forget what it was about.
I’ve lost some of the natural eloquence I had, thinking and talking and doing is much harder work than it used to be, and it makes me feel stupid and vulnerable. I want to express myself but I am constantly battling my brain fog.
My ability to think and comprehend well – and quickly – was one of the few skills I could always rely on and be a little proud of. I’m starting to really dislike how slow and sluggish chronic illness is making my thoughts.
And the worst part? Only I seem to see it. I’m constantly reassured by others that I am fine and a little memory loss is normal when getting older.
This isn’t though, besides, that reassurance is slightly at odds with the “but you’re so young, don’t worry” platitude I constantly hear when I try to explain my chronic illness.
If living with endometriosis has taught me anything – it’s that only you know what’s normal for your body. If you’re uncomfortable or something feels wrong or out of place, only you know that for certain, and assurances from others aren’t going to cut it if you have an instinct about something.
Strange, and stranger still
Oddly, I find the best way to cope with my memory problems is to do my best to put them out of my mind, to forget about them. I find I seem to cope better when I am not painfully aware of distracting blanks in my memory. It’s not a false sense of security, but it does encourage me not to give into the negativity that my memory problems cause. When I notice I am struggling to remember something I fumble, and then I fumble more with the expectation of those around me, it’s easier to put it out of my mind than to dwell on how rubbish I am doing.
Easier said than done right? I know.
I must say most of my problems are while I am working. Working full-time takes up most of my energy and cognitive ability, so it’s only natural that that’s where I experience the most issues.
Helping me cope
I’ve taken to taking a small notepad around with me when I am struggling, popping down a few helpful words when I need a reminder, or making a note of another person’s point that I want to follow up on or ask a question about. Anyone else will just think I am taking notes in our meetings so it calms me a great deal and avoids situations where I might forget things mid sentence.
Another way I cope is to make constant to do lists of what I have to do that day. That’s to avoid situations where I start walking somewhere and completely forget how or why.
Both of these coping mechanisms strangely, have led to me being called organised. Such is the perverse reality of living with an invisible illness. I don’t think many people realise how I use these tactics just to keep my head together despite illness. Making things up as I go along is a liberty I can rarely experience now.
My memory issues fluctuate every day like all my symptoms, it doesn’t seem constant. Sometimes the words or actions are in my head and sometimes they are not. I am doing my best to come to terms with this new realisation too. It feels like something more sinister than something that is natural with age though, and I’m no age at all in my late 20s.
I’m constantly aware of this new problem, and I find it mortifying and deeply embarrassing. Hopefully starting to talk about it will take some of the stigma away.