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.
Finding this website has been amazing
it’s been a real comfort to read that others are having to same issues.
I to cannot live without some kind of list or reminder on my phone, but never considered it to be related to my endometriosis! Does anyone else find that the memory issues and clumsiness gets worse just before your period starts?
Hi Beth, I don’t know if it’s related directly to the endometriosis but for me it’s certainly related to the chronic fatigue I experience. The way I’d describe it is that my body is so run down trying to keep me going with endometriosis that my cognitive ability is completely impaired. Like I am completely running on empty and although all the same thoughts are still in my head as before someone’s hidden them all from me.
The fatigue and memory issues very much impact on my quality of life at the moment, it’s comforting to read the support and understanding on herd
I’m so glad I came across this site. I’m 27 years old and was diagnosed with stage 4 endometriosis in January of this year. I my 1st lap done in December to get officially diagnosed. I thought the surgery would help but I’m already having constant pain. I wake up most mornings feeling nauseous and dread being in the car to commute to work. I’m constantly fatigued and have felt like my mind is always foggy. I was glad to hear I’m not the only one with memory problems. I find it hard to come up with the words to speak or word things differently. It makes me stupid. I just wish there was something I could do to control all of this.
Hi Nicole, memory problems with pain are complex, but they are real and I think it’s something that we have to talk about more as they’re some of the symptoms that bother me the most and often it feels like other people don’t recognise this fully.
Funnily enough the information I’ve found most helpful to help me with memory loss is the information at my local library. There’s a big campaign about dementia about at the moment and although unrelated I’ve found the specific advice about how to improve memory from that very useful.
Hello folks.
I am a middle-aged bloke who , for nearly ten years has been blessed with rheumatoid arthritis.
For nearly forty years I have worked on some rather complex radio and control room systems , the last few years as a computer networker. Complex , potentially profound ramifications when I mess-up.
The last two or three years have been a nightmare. Nearly every day I do something outragiously dull at work , I forget fundamental things that I have done for years and last did yesterday.
It is an utter nightmare.
The condition is grim , the medication is grim. The physical elements I can quantify and deal with – “losing my marbles” because of the memory issue is proving impossible to manage.
At first I did not recognise the debillitating fatigue of rheumatoid arthritis , I noticed after I started to manage the physical problems.
A typical situation – when I buy some food for dinner I put it in the refrigerator at work. So that I do not go home without it I put my car keys in the shopping bag – idiot proof I hear you say .
Three and a half hours after everybody else has gone home I finally remember where my car keys are.
Doh!
Dave W.
I completely sympathise Dave. Thank you for sharing your story.
Thanks for this post, my mums been poorly with ME for a few years now and her memory is gradually getting worse, it’s hard not to panic that it’s Dementia but what a lot of you write is sounding so similar to her problems! Short term memory loss, can’t remember words, can’t learn new things, so frightening for her! Is awful to watch but must be so awful to experience! Does anyone know how long this can go on for? Thanks again!☺️
No problem. If you’re ever concerned about your mother’s memory though please speak to your doctor. This is just my experience. It is as far as I am aware something that will remain for the duration of my illness. It fluctuates, but is generally worse when I am more run down and tired.
I have chronic hip pain with an undiagnosed cause and I get terribly frustrated at myself regularly. I’ve spend most of my life being top of the class. quick thinking and able to read people easily. Since my chronic pain has developed I struggle to do things I would like to and struggle even more to hold conversations with people. My friends / family have decided amongst themselves that it’s not because i’m ill but because i’m just stressed but I can’t think straight for the pain i’m experiencing daily.
Only yestereday I had one of my most embarrassing moments. I work as a waitress and my colleagues know I’m in pain but I don’t think before yesterday they really understood the extent of my problem. It was a busy evening shift, the pub/restaurant was full of people and I’d been asked to change one of the meals on the board. It involved wiping off one meal and writing on another. The chef had told me exactly what had to be done and I grabbed a chair so I could stand on it and reach and looked up at the board and went completely blank. I went back and asked the chef again and he told me. I went back, wiped the old meal off the board and went completely blank again. the area of the bar behind me was packed, two staff behind the bar were busy and I completely froze. I couldn’t have told anyone my name let alone what meal I was supposed to write on the board.
Everyone I work with knows I’m always on the ball, that I can be doing 8 different jobs at once and never make a mistake and I couldn’t remember the name of the stupid soup I was supposed to write on the board. I was so embarrassed I was in tears. The people I work with are very supportive and all of them attempted to be very reassuring , ‘ other people forget things all the time’, it’s okay and in truth there was no great problem with me forgetting what i was supposed to be writing on the board. Except my own frustration and despair at myself.
Thank you fro writing this blog. It’s nice to know I’m not on my own.
What a great example of what it’s like Jenny, thank you for sharing 🙂
OMG!!!!! I feel relieved to know I’m not the only one going thru this. I just turned 37 and I’ve been in pain for over13 yrs. I just found out 4 yrs ago I have endo. I’m in pain everyday of my life, but about 7 months ago something changed. I’m in way more pain and its different and moved to other parts of my body.
I’m turning in papers for charity care tomorrow so I can have hysterectomy. I can’t take it any more. The pain is unbearable. I wish I knew what it felt like to live without pain. More people need to be aware of this disease and they should be working on a cure. It would be nice if we had a chat group or somewhere we could meet and talk about this disease and offer help and support to each other.
By the way my name is Jonnie Ramirez and I live in Wilmington, N.C. if anyone wants to talk feel free to call me [phone number removed] or email me …. jonnieramirez56@gmail.com I have 2 beautiful children. I had my tubes tied but after meeting my husband about 2 yrs later I had tubal reversal. If only the Dr who supposed to of checked to see if I had endo had told me I had endo but failed to do so and said I didn’t have it only to find out 2 yrs later I have server endo. I angry that I had my stomach cut into, and not really sure what they really done. I just want to be out of pain and be able to play with my kids. I want my life back, without pain. Well, gonna try and go to sleep now. Good night, actually good morning. Thanks for listening. Sincerely, a need to be in no more pain and a cure for this evil disease….
Thank you i needed to read this. I also have endo and i strugle allot with memory loss and lack of consetration so i started to get worried. This illness has changed my life so drastically i cant believe. Good luck with your memory. I am also in my 20s i am 25 now and its embarasing cant even spell words right anymore.
I just found your blog and glad I did. I have never known anyone to suffer this symptom and it sound so similar with my experiences. It is a symptom that you definitely realise over time and the more you realise, the more frustrating it gets. I have a lot of people get offended that I never remember detailed conversations which definitely make me feel bad. I also have to write EVERYTHING down too. And losing sentences as if they literally fall off a cliff in my head… I’m with you on that one. Just wanted to drop a note to say thanks for sharing (even if it is a few years old post!)
Thank you for this post.
Impaired cognitive ability and specifically, memory problems, appear to be co-morbid with endometriosis in my experience.
When I ovulate or menstruate, the brain fog and fatigue interfere both with my ability to speak articulately and to retain / recall information. Sentences go unfinished because I fail to find the words. At its worst, I struggle to recall my name. It’s an embarrassing and frustrating problem.
Speed reading exercises are helpful in enhancing brain performance, and I’m also experimenting with cocoa flavanols. A study reports that the latter may increase blood / oxygen flow to the brain which prevents cognitive decline and improves memory. I’ll post an update if this supplement proves successful.