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.
At first I was pretty mortified by my inability to speak normally. Something that’s helped me is that I’ve told my husband that when I talk to him, I’m just going to talk. I never worry about making sense, I know he knows what I mean, and if he doesn’t he can ask to clarify. So I say a lot of things like “You know, because it’s like sometimes impossible and you can’t like, do it? So it doesn’t work, you know, sometimes.” and if I get stuck in a loop or I just trail off trying to find words, he offers up what he thinks I might be trying to say. Finding someone you’re comfortable with to try this will really help you get back to just speaking and thinking at the same time – for me, it’s like brain exercise.
Luckily, I find I can still write pretty well. But I have lots of time to stop and think in that case.
I know exactly what you mean, my partner and closest friends are exactly the same way. I really struggle with this at work though, when I am trying to talk about something and must look like such an idiot to some.
I’ve taken genuine comfort from your comment though, hearing someone else’s story gives me some encouragement
Lots of my friends and family are still very dismissive about it, but they can’t see the gaps in my brain like I can.
wow, this is the first time I have read something that sounded so much like my experience. I’ve been talking about cognitive issues for years with docs and getting nowhere… I am a year out of surgery and am getting those old familiar spells of massive fatigue again… I feel like I’m slurring words and spending eons of time hunting for the words I want to say… It feels awful and embarrassing at work and socially. I am a fighter, though. Making it work. Thanks so much for sharing.
Good to hear that you’re fighting Kim, taking control of your illness really helps with the day to day effects of living with a chronic illness. I”m so encouraged to hear that other people are experiencing this also, illness has a way of making you feel very alone and that you’re the only person who suffers with something.
I just wanted to say thank you for contributing such a positive, hopeful, and truthful voice to folks with endo. Many of us have spent years trying to convince others that “something is wrong”, so many of the info out there is describes the “dreaded disease”. That is understandable, but it doesn’t help when trying to cope with the various problems we face. Your voice is refreshing and sparks empowerment over these issues. Even if we can’t control the fact that we have the illness, it is good to be reminded to keep positive and find new ways to adapt and thrive. We can collectively rise above. Thank you!!!
This is an incredible blog! I truly feel as if you are speaking of my own experience. This is word for word what I think on a daily basis. My way of coping is that I laugh it off by saying it’s my “brain tumor” again
I am a teacher, and it is embarrassing when I forget to hold a student accountable for misbehaving, or promise something to the whole class only to forget to do it… I have had to take notes in our meetings, and have become much more organized in general, but in a classroom setting I am not always able to go to my desk to write something down on a post-it note, and by the time I do end up at my desk I have completely forgotten everything in the past. It is even worse when a parent asks me about an incident that happened a week ago, or even the day before, and I have no recollection and have to fumble my way through it… Having endo. has taught me to be a great actress!
Hi Jacqueline,
Thanks for your comment. Of all the things that I have written about I am most heartened by the experiences of others women saying that they do suffer from memory problems because of endometriosis. I was starting to think I was the only one, because I could find so little information about it and my doctors are very dismissive of the symptom. I’ve started to carry around a notepad around my neck on the very very worst days, perhaps that’s something that might help you.
Endo does make you a great actress, you’re quite right, I think we can all relate to that one.