Does anyone feel as though they've lost their personality?I haven't felt like myself since my diagnosis over 20 years ago.
Personality changed?: Does anyone feel as... - My MSAA Community
Personality changed?
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Flowerdragon
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yes. I don’t either. Supposedly we have to “reinvent” ourselves :/. I feel more needy. I’ve never asked for help before I’ve always been the strong one. Not so much anymore
Definitely. I used to be more adventurous. Now I don't like to go very far. And I'm afraid of a lot of things going wrong.
I still feel like myself, I'm just struggling with a lot more stuff. I'm really sorry that you've been feeling this way for so long.
I hope that you'll talk to your doctor about it if your haven't already. I wonder if it could possibly be depression-related?
Thank you. My doctor has retired but I'll find someone.
No, I don't think I have. Got my clinically definite diagnosis of RRMS 9ish years ago, but I think I'm the same person as before: as organised as I can be, things on my phone (like information and dates on the calendar), a bit of a kultz (see how many phones I've accidentally dropped and broken), the go-to for everyday medical stuff, the one who's always open and there for a chat (literally), the proverbial 'mother' of the friend group, always sharing too much stuff that other people don't want shared, and going radio-silent on people that I don't think deserve my attention.For the last one, I cut my deadbeat father out of my life after all I remember of him was the drunkenness, the highs, the animal abuse (he was too busy playing games to let his dog out for a wee, got angry when the dog wee'd inside the house, and would slap it with a belt, and the comment he said to me one night in his drunk and high state, "my workmates are confused as to why I wasn't hand-bathing you!" I was 14. That's the moment I properly realised why my mum broke up with him not long after I was born.
My husband slapped our dog one night (I can't remember the reason), which made our dog cry in the same way deadbeat's dog did. That then made me break down in tears, and he apologised so much to our dog and me when I told him. The only person I have contact with from deadbeat's side is my sister from him, and she doesn't have much contact with him anymore.
So, I really don't think my personality has changed.
You sound like a wonderful friend and a sensitive, caring person. It makes me cry to hear the dogs' stories. The most upsetting thing is how you were treated by your father. Good for you, to break away from that's sick situation. Best of luck to you.
Thank you so much 🫂❤️ my mum's new partner is an absolute star! We get on so well together that, for my wedding last year, he nearly cried when I asked him to walk me down the aisle ❤️ I'm also the extra daughter to husband's family, and his dad's always there in case I need anything 😁 like, husband and his dad are currently making our back yard less hectic, and whenever his dad and husband have finished off a bit, his dad asks me what I think of it ❤️ I'm feeling better in my situation. From me going to university and meeting husband on a double date, to mum kicking out my brother's, gaslighting d-head dad and to her looking on POF, I think I'm in a safe place now 💗
Yay!!!❤️
I have definitely had my personality change.. and others have noticed. I ran a company with over 1000 people and was very involved with most of them. I founded the company when I was 23 years old and was outgoing and charismatic . Many have said when I was about 35 and the "lights went out". I wasn't diagnosed until I was 46 but with scans quickly found out I had been suffering from MS for a long while (since my early 20's)....it explained a lot to me about things that had happened in my past. Now at 54 I still am extremely quiet and introverted.
I don't know if the meds have changed me or the MS and the embarrassing side effects of the disease .....but I am changed forever.
Thank you for sharing this. It is so hard to reflect on the things that have been stolen by this disease. There are days I deeply grieve the "before" me. There are days I am content with the "now" me.
I was talking with my manager the other day during a "formal" 1-1, where he had to note we had discussed such things like career progression at the company, etc.
I don't think he was expecting me to say I have no interest in any kind of leadership position. I know it's against the 'norm' for people in their 40s in the corporate world. I am acutely aware of my limitations and know that a job like that would not benefit my physical and mental health. I will leave that for the 20-somethings that have the energy & ambition.
I told him that two years ago, before I left my job as a school aide, I had spent as much time researching disability as I did applying for jobs. I was losing the battle against my body & knew I could no longer do the job I had.
In the end, leaving a job I loved was the right decision. After 2 years, I can say that my physical health had improved. My body is no longer consumed by crushing exhaustion and I am able to function again.
Now that I work from home, my coworkers will only see the 'digital interactions' side of me, which I can control. They will never know the 'before' me and all of the physical things I can no longer do. Having that control over the way others see me gives me confidence in at least that part of my MS battle.
I do still struggle being out in the community where I run into former co-workers from my 'school' years. Only a handful of friends know I have MS and a few more know I left because of a 'chronic illness'. The majority were in the dark and I fear they will 'notice' something and ask questions.
It's great that you know what you can handle without overdoing it. When I was diagnosed, my doctor told me that stress and fatigue were my new enemies. I take on too much: I'm not good at saying "no" and I don't know how to relax!
I know my work limitations *now*...
The 'career reset' really helped me redefine my expectations of what success looks like at work. 'Before' I was so afraid of letting others see my growing weaknesses and having to relocate to a building where I would have been sitting all day instead of moving class to class every hour. I was embarrased by the physical deficits (even if others didn't see them) and pushed myself harder than I should have to maintain appearances.
My job now is defined by how well I can effectively troubleshoot & has no physical expectations, other than being tied to a computer all day. Managers have to be available and have a much larger time commitment (with more stress). I don't want any part of that, lol! I have become very selfish and only want to spend my energy on things I choose and not other people's problems at work.
I joined this forum to better understand my husband and the daily struggles he faces. I want to be able to help him in the best way I can, and the more I understand what it’s doing to him emotionally, the better I can do that.
He has always been quiet… but so intelligent. Very successful at work, very calm. We always called him our own personal encyclopedia because he’s so incredibly smart. But all his lesions are on his brain. He gets easily frustrated, loses everything, can’t remember a lot of things. He feels like he is in a constant fog and is losing his identity. Right now he travels with work… but honestly, I don’t see him being able to do it many more years.
I feel like I’m losing my best friend a little every day. It breaks my heart and I don’t know the best way to help.
I am sorry for this and can't offer much help. The mental loss is what has bothered me the most. Not that I was highly intelligent in the first place, but I'm aware that I've lost most of what I used to know. My attention span is nonexistent at times, and my reading comprehension totally sucks. I have slowly expanded the hobbies that don't require much thought. They bring me joy and a sense of satisfaction that I can still do SOMEthing.
We all need to be needed and to feel useful. Can you direct your husband's attentions towards some new activities? The loss of thinking capacity is a very personal journey, but of course you'll be grieving the loss, too. You'll both have to come to terms with the fact that the past is gone and that your new lives can still be good but different.
You seem so caring and supportive for your husband. Being there for him to lean on and being an understanding partner are surely helping him through these weird phases of MS.I, too, feel as though I am losing (just holding on to) my identity. It makes me sad and sometimes I feel as though I'm just going through the motions of living.
I try to find joy in the small things ... In nature... in a job well done...in music, etc. but it all seems superficial.
It seems like the only deep, real feelings I have are those of anger or sorrow.
This quote helped me put things in perspective.
Anger -> grief
🙏
The ability to understand, process, and retain have always been my greatest skills, even from a young age. It has carried me far in life and is not only how others see me, it is ingrained in the very fiber of my being. I am always thinking. I'm sure your husband is the same way, and is grieving the parts of him he feels he is losing.
When I raised this concern to my neurologist once, he told me we don't lose our intelligence. He was a smart man, but I'm not sure he knew what he was talking about, because it sure doesn't feel that way when you're living it! 😂😂
I would caution that sometimes medications can also contribute to that "foggy" feeling. I was on a medication once that made my head feel "swimmy" at the lowest doses & I stopped taking it. I would rather my feet tingle than have my brain feeling that way. It may be something worth mentioning to his doctor, either to see if a medication needs adjusted or to see if there's something that can help him think more clearly so he doesn't spend so much energy fighting the fog. The harder he has to fight to think clearly, the more exhausting it is. Exhausted thinkers can be quite grumpy (ask me how I know 🤣).
As for how you can help, it sounds like you are off to a great start. I don't know how I would survive without setting reminders and leaving notes for myself. If it's not something he does already, perhaps you can lead by example and start leaving notes/reminders for yourself. We also keep a calendar on the fridge so everyone can see it and keep others from forgetting about obligations. If he sees you writing things down to remember them, it could become the "norm" and he might start trying it too. This probably applies to other things as well. Sometimes I'm so stuck in the "way" it has to be that I miss the easier option right in front of me until someone shows me.
Yes and no. Forty years ago when diagnosed I lost my innocence, the one that allows a person to feel safe from bad things happening. That and having to take care of myself more changed how I lived. And, of course, I have changed, grown, over 40 years. But I don't think the core of who I am hasn't changed. Personality the same, the way I live, different. Perhaps I have more somewhat down days. Not sure.
I feel this. I am not the same person I was before being diagnosed at age 36. However, my life is different than it was 7 years ago. Is it age + life that has changed my personality? Is it MS?
I'm guessing it's probably both.
My kids are grown now - my daily responsibilities are different than they were several years ago. The "do-it-all mom" personality has no place in this life anymore. This would have changed regardless of having MS.
The "I can do anything" personality has been physically stolen by MS. I have struggled to replace that part of me because I still want to be capable/do all the things I used to do with ease.
My tolerance for BS is razor-thin most days. I used to let a lot more things roll off of my back. Now, not so much. I think that's just part of the wisdom and confidence that comes with aging.
There are other things, though, that haven't changed. I still love to learn. I still want to make a positive impact on the world. Some days those look different than they used to, and that's okay because it's taught me new ways to "keep" that part of me.
Thank you for asking this question! I think I needed this little "pep-talk-to-myself", lol! Hopefully it helps you too!
Yes, it helps! I suppose that the passing of years (I don't want to admit "aging!") accounts for some of the change. My situation in life has changed a lot, too. I, also, hope to keep learning as much as I can. Making a positive impact is the best! You're doing it!
Haha, maybe we shouldn't use the 'a' word! I like "passing of years" instead!
I fully expect - after a couple more decades of living with MS - to be a bitter, resentful old hag. Might as well share the better parts of me while they're still here 😂😂😂
"Bitter, resentful old hag" 😂
I think Greentime has said it well for me. I've been dealing with this most of my life now, but while my lifestyle, actions, and activities have changed at various times due to outside factors I'd have to say that my basic personality has remained the same.
I have the advantage of being a life-long loner, so my current somewhat-secluded lifestyle is really just my ultimate comfort zone. I'm finally finding the time to follow the interests that were put on the back burner during the years of being wife/mother/office worker.
Have you watched the MS Oldtimer YouTube segments that she posted?
No I haven't. I'll check them out, thanks.
Yes, 6 hears of a slow decline into someone I didn't recognize. I starting wake up to myself about 2 years ago, slowly. Don't give up!
That's encouraging, thank you!
I don't think so but my husband says it's more "concentrated".😅
Prior to being diagnosed, my personality changed quite a lot. I couldn't control reactions, etc. When I was diagnosed and put on meds, I mellowed out to go back to me. I was "me" for a lot of years, but have been evolving again. I feel like I'm treading on ice sometimes. Sometimes that ice is thick, thin, or I just fall on it.
My personality changes because I have more clear what is better for my health. After my diagnostic in 1999 I travelled less, much less that I haven´t MS. Maybe the cause was that I had problems in the right leg in stress moments, because of the work or because of people. or because after I hadn´t work, I had and have less money for travelling so much as before of 1999. this years since 2007 to 2024 to travel is focused on train amd on bus, and few times in fly. 2 times only. Many circunstances do to me don´t travel so much, and is not a problem. For my MS I prefer travel with all down control. the hotel, the house where I am going to pass the travel, and the days to go and to come back . This things aren´t so important before the diagnostic, I was doing travels without care myself, and now with MS and without work, I travel caring myself for come back in a good heath.
yes & I’ve also been told so. I have less patience and easily frustrated. I can no longer multitask like I used to. I’m not as quick as I used to be.I cry at everything (pseudo peublar). I feel like my own version of BC/AD before MS/after MS, diagnosis that is because obviously I had it before I knew it.
me too - and I also cry at everything. I never used to cry.
carolek572CommunityAmbassador
Welcome to the forum, Flowerdragon ! Good question. I think that I have changed, physically, yes, and probably personality wise as well. I am probably more aware of my surroundings and I try to make the best of the day as possible. I look forward to hearing more from you. Keep Smiling! 
Thank you, and keep looking at the bright side!
I think our diagnosis and a mixture of hormones and other factors make us feel differently and definitely for me; more emotional at times. Talk to your doctor about this and think about things that make you feel good, which might include reaching out to the MS Society for support groups in your area. I love this community group and support we share with one another, but it may not be enough or for others along with their spiritual life it works. Only you can determine the best path for your inner peace. Someone here in our community will always have a word of encouragement or a shared experience. From a distance this, my understanding and caring family. NeeC
Thank you.
My husband has MS. 3 years now. All his lesions are on the brain and it has changed his personality. I’m so sorry. I can’t imagine what you must feel like. It really frustrates my husband.
I'm sorry to hear that. It is frustrating. I wish you both well.
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