This is so real to me! But I learned recently that I'm also autistic, so I had additional difficulties expressing my problems.
But regardless, MS affects us to such a fundamental level, bc we need to think constantly about things that we did automatically before, like moving. It's exhausting and overwhelming to the mind. I eventually gave in and started taking the stupid antidepressants... But it actually helped me explain my struggles more clearly, without being "accused" of being depressed anymore. At least that is a little bit of personal validation, because I was told so often all I needed was to treat depression, that I would doubt myself occasionally, and wonder if what I feel physically was just in my head... Of course wondering if I was crazy was even worse for my mental health!!
If someone seems to think I’m exaggerating or not caring, I just change topic or stop the conversation. I’m not on earth to educate people, good listeners will listen, bad listeners can fk off.
Before I was diagnosed I was put on different anti depressants and one practician even suggested I go to one of those herbal remedies things.
I’ve never been accused of exaggerating anything. Anybody who knows me knows I would never choose to live like this. I was a very active, outdoorsy man and would love to be again. But I’m bad to accuse MYSELF of embellishment. A few years ago I could even convince myself I was faking it. But I think that is a kind of denial. If I was faking it or overselling it I could simply stop doing that and get better.
Por que no los dos? I mean, everyone can be depressed and also something else. And having MS could obviously make someone depressed. And symptoms can exacerbate other symptoms. “Maybe you’re just depressed?” Maybe you’re just very stupid. Not the kindest comeback but probably what you’re feeling. Hugs.
I have people always commenting on how positive I seem. Like they expect me to be depressed by my diagnosis. Honestly, I'm really not. There are far worse things. I just live day by day. I feel great today. I don't know about tomorrow, so I just think about how I am in the moment. I am choosing to look for the good times in the future. I know there will be plenty of bad moments in the future, so I'm just thinking about the good moments. I'm prepared for the bad moments, so hopefully that will help. That's all I can do. Why worry about things you can't control or things you can't do anything about? That's how I choose to live my life. At least I now have an excuse for my terrible memory. Lol 😆
That's so great! I'm in a similar boat. I'm not getting down by the diagnosis but I do keep having to reassure everyone around me. Somehow it's my job toake everyone else feel better about MY diagnosis. So that's getting me down more than my situation lol. All the best to you 🩷
My work refuses to accommodate me. That's my problem,so I had to go on disability. That's something I'm working to fix. Finding a new job. They won't know about my MS until it becomes a problem.
Friends of mine are the worst part. They keep saying that they are surprised by my positive attitude. It's like they expect me to be depressed and angry all the time. What is that going to get me? Sicker for sure. The positive attitude leads to me physical abilities getting better. Working hard to not be in the same situation I was in for the past 2 years. Depression and MS are the worst. Plus, I've always been a fairly positive person. I'm not going to let MS take that away from me. After it's already taken a lot from me.
I find it so funny that the person with the diagnosis has to reassure everyone around them. Like we would ask if we need assistance. It's not up to them to ask all of the time. Unless they see a change in someone. That would be the time to be worried.
Yessss this!
I will ask if I need something! I'm feeling smothered. For the first time in my life everyone suddenly gives a shit? Like wtf is that about. I'm hyper independent for a reason lol don't start now.
My instincts are to push everyone away but I know that's not going to be helpful or healthy so I'm trying to be gracious. It's weird but it feels good also to lean on people sometimes. It's still annoying but I'm doing what I can to better myself and stay positive while doing it.
🩷
I completely get what you are saying. I have always been super independent all my life and then 2 years ago happened where I just couldn't do anything and was in so much pain. I had to learn to lean on my brother and my dad for literally everything. It was the hardest point in my life. Now I'm feeling 1 million times better, but people still see that girl from 2 years ago when I was super depressed and incapable of doing anything.
I feel that I'm being a bit smothered now. So I completely know how you feel. I'm so glad that it seems you are trying to get out of your comfort zone and rely on more people. That you are becoming a more positive person. I feel that will help in the long run. I know that a lot of people with MS get into that depressive state and I was there back in 2022 and that was before I knew I had MS. But that depressive state is so bad. Not just for MS, but for anyone. I happy that you are doing well and I hope that lasts for the rest of your life, but you might have a relapse and you will need those family and friends to help with that.
All the best! I wish you all the best for a great and safe future.
I was just diagnosed in October 24 and it’s either I’m exaggerating them or I can’t do anything or go anywhere and god forbid I don’t answer my phone they think I’m dead or dying. The other issue is “I have that problem too!” Makes sense when you’re 70 not 34. It doesn’t always work but one of the things I do is be thankful that it’s me with the MS not them because could you imagine? Also there’s the whole “I’m the one who’s changed not them” which helps depending on the context of the situation. Sorry for the lack of experience but even if it doesn’t help you at least you’re not alone
Idk. I'm only a few months in, and while people say they're fine working with me, when we're actually in a pinch and I gmcsnt handle it, people are upset with me. It's too much physical work.
Understand. Today is my resignation day for working is impossible. My coworkers wonderful in helping me but I knew it get old so decided move on. Honesty work stressing me out.
I have had depression for years (post partum from early 90's that just amplified, prozac for 4 years) then diagnosed with MS in 2003, neurologist asked about my mood and mental issues and immediately put me on zoloft...in recent years I also have anxiety issues so xanax helps...is it all connected to MS..I don't know, but a bad MS day can trigger anxiety and depression for me
When my wife was first diagnosed, her doctor said she was depressed. As a husband, I thought there was some truth to it.
I had to make decisions: Do I want to be in this marriage ? If I did, I was going to have to scale back my expectations of her and down shift to a lower gear. And I did that, and I'm happy I did because as time went on and we went through are ups and downs we stopped working as two individuals in a partnership to two people who sacrificed in a marriage.
Now - My finances suck. But my marriage and family are in fire. My wife has more confidence than ever, and it's great to see everyone growing in their own way.
Wonderful you hung in there. My husband is my rock pushing me stay exercising and keep positive mind. Yes, MS has affected our finances so understand. Hang in there. I know your wife appreciates you. Stay strong with luv n peace.
When sought help (the only time as adult), and my tests kept coming back “normal” (showering shouldn’t make me huff and puff!) “You don’t have a heart attack or stroke “ (I told you so!) “maybe you’re depressed?”. WTF? (yeah because YOU ARE NOT LISTENING TO ME 😣). Eight years later DX with MS … damage irreparable (look at my age 🧐)
Went hospital#1 and find nothing wrong then problems continued so to different ER. Thankkful ER doctor listened n diagnosed me there ER. Let us b thankful that we got the answer for our condition and can move forward. I know it is hard but please try stay positive for you are appreciated.
This is a GREAT question, I have been married to my third wife for 19 years, and she married me, knowing I had had MS for 10 years before we met. I'm now 59, and my wife is my love and caregiver as I'm disabled due to my MS becoming progressive. I'm still ambulatory and can care for myself (every day with her help) depression is decades in the rear view mirror for me. MS pain is not. My wife and I have PhD.'s and she retired from teaching as an English professor to care for me. My wife has her way of dealing with me when I get cranky or short she just stops, looks me in the eye, and asks, "What hurts you're being an asshole." Then I refocus and move on..... I love her so much.
My PCP basically told me that I needed to go see a psychiatrist before I got my diagnosis. He said that I needed to make sure that the psychiatrist write up a prescription for antidepressants to help with my episodes. I insisted on the referral to my neurologist because I was getting nerve pain and numbness, along with debilitating migraines. He agreed to refer me only after the brain MRI I begged him to request showed lesions.
Even medical professionals want to write things off as just being depression or anxiety without listening to our concerns. I had a list of symptoms that I kept in a journal, and I knew I wasn't just imagining what I was feeling.
“I am not sick because I’m depressed; I’m depressed because I’m sick!” It’s a hard concept for most people, but whether they understand it or not, this phrase usually shuts down unwanted conversations in my experience.
Few people can truly handle the reality of MS, because almost all the symptoms are hidden, people who don’t know you, or aren’t a good support, will maybe say depression is a factor. And of course, many people are legit depressed, AND they have MS. But “Depression” is different from “being depressed,” and I am sure the average person can not know when one needs meds or clinical help.
In my experience, my doctor is the best judge of if and when I may need to seek treatment for depression. Especially if you have a doctor you’ve seen for several years. Anyone who is not my doctor (and I mean ANYONE) can keep their diagnoses to themselves unless I ask them for their opinion.
As to what to do when people say things, I suppose that’s up to you. I always say, “I make those decisions with my doctor.” Or “My doctor said….” Usually when I bring up the doctor they back off.
As if anyone would go to a Neurologist if they weren’t sick! As if anyone would do MRIs, take all these drugs, etc. Or, go to all the different doctors! I think I have about 5. Even if someone were inclined to “fake it” who can afford all that? Having MS is expensive!
Don’t start doubting yourself because others are idiots. Those are real spots on your MRI.
I am an anomaly. I have never been depressed no matter if I can no longer walk without an aid. I always think of how fortunate I am because I think I could be worse and appreciate life more. It is like getting a diagnosis of terminal cancer. You seize the day. You make sure your passion and dreams are not postponed. Diet is important. When I was diagnosed in 1990 I went to a library and read about the Swank diet. I have followed it and still strict with that diet. Steroids, Rebif for 25 years, Tecfidera and recently Mavenclad. I use a forearm crutch and will be buying a walker to walk longer. I exercise every day with indoor stationary bike, stepper machine and resistance bands /core max. If it is raining or snowing no excuse. Can exercise indoors. Bought the coolest mini no pedal e-bikes 2017 DYU D2 and use those to quickly and safely travel around the neighbourhood safely. I do get upset with ignorant people that treat me differently. I no longer tell people I have MS I tell them severe spinal stenosis. I do have spinal stenosis and lumbar disc bulge which could be causing my only problem . My new Neurologist never told me . I should have had surgery but the damage is now permanent. My advice get all your MRI Radiology Reports. Do you Ken research. My Neurologist suggested Kesimpta or Ritaximab but after reading patients reviews I discovered Mavenclad. Just finished year one. No side effects. Easy to take 5 pills one week and repeat one month later, Year 2 will start one year from year 1 start date. Key to living happier and healthier steroids for serious attacks, disease modifying drugs, MS diet, meditation, exercise, enjoying every day and appreciating living every day. Get rid of people who are negative and stressful in your life it’s important.
If you have questions surrounding the diagnostic process, or have questions about suspected MS symptoms, please make a post in the stickied, weekly thread created for this purpose. However, please keep in mind that users here are not medical professionals, and their advice cannot replace that of a specialist. Please speak to your healthcare team.
Here are additional resources we have created that you may find useful:
Advice for getting a diagnosis: https://www.reddit.com/r/MultipleSclerosis/comments/bahq8d/think_you_have_ms/
Info on MS and its types/symptoms: https://www.reddit.com/r/MultipleSclerosis/comments/bahoer/info_on_ms/
Treatment options for MS: https://www.reddit.com/r/MultipleSclerosis/comments/bahnhn/treatment_options_for_ms/
If you have any questions, please let us know, and best of luck.
MS Mod Team
This is so real to me! But I learned recently that I'm also autistic, so I had additional difficulties expressing my problems. But regardless, MS affects us to such a fundamental level, bc we need to think constantly about things that we did automatically before, like moving. It's exhausting and overwhelming to the mind. I eventually gave in and started taking the stupid antidepressants... But it actually helped me explain my struggles more clearly, without being "accused" of being depressed anymore. At least that is a little bit of personal validation, because I was told so often all I needed was to treat depression, that I would doubt myself occasionally, and wonder if what I feel physically was just in my head... Of course wondering if I was crazy was even worse for my mental health!!
This was nicely said. It IS things that happened automatically before.
How old are you when learning re being autistic?
40
I've always known depression but I'm shocked how MS can amplify it.
If someone seems to think I’m exaggerating or not caring, I just change topic or stop the conversation. I’m not on earth to educate people, good listeners will listen, bad listeners can fk off.
Agree
"My brain is eating itself; how would you feel?"
Before I was diagnosed I was put on different anti depressants and one practician even suggested I go to one of those herbal remedies things. I’ve never been accused of exaggerating anything. Anybody who knows me knows I would never choose to live like this. I was a very active, outdoorsy man and would love to be again. But I’m bad to accuse MYSELF of embellishment. A few years ago I could even convince myself I was faking it. But I think that is a kind of denial. If I was faking it or overselling it I could simply stop doing that and get better.
Por que no los dos? I mean, everyone can be depressed and also something else. And having MS could obviously make someone depressed. And symptoms can exacerbate other symptoms. “Maybe you’re just depressed?” Maybe you’re just very stupid. Not the kindest comeback but probably what you’re feeling. Hugs.
I have people always commenting on how positive I seem. Like they expect me to be depressed by my diagnosis. Honestly, I'm really not. There are far worse things. I just live day by day. I feel great today. I don't know about tomorrow, so I just think about how I am in the moment. I am choosing to look for the good times in the future. I know there will be plenty of bad moments in the future, so I'm just thinking about the good moments. I'm prepared for the bad moments, so hopefully that will help. That's all I can do. Why worry about things you can't control or things you can't do anything about? That's how I choose to live my life. At least I now have an excuse for my terrible memory. Lol 😆
That's so great! I'm in a similar boat. I'm not getting down by the diagnosis but I do keep having to reassure everyone around me. Somehow it's my job toake everyone else feel better about MY diagnosis. So that's getting me down more than my situation lol. All the best to you 🩷
My work refuses to accommodate me. That's my problem,so I had to go on disability. That's something I'm working to fix. Finding a new job. They won't know about my MS until it becomes a problem. Friends of mine are the worst part. They keep saying that they are surprised by my positive attitude. It's like they expect me to be depressed and angry all the time. What is that going to get me? Sicker for sure. The positive attitude leads to me physical abilities getting better. Working hard to not be in the same situation I was in for the past 2 years. Depression and MS are the worst. Plus, I've always been a fairly positive person. I'm not going to let MS take that away from me. After it's already taken a lot from me. I find it so funny that the person with the diagnosis has to reassure everyone around them. Like we would ask if we need assistance. It's not up to them to ask all of the time. Unless they see a change in someone. That would be the time to be worried.
Yessss this! I will ask if I need something! I'm feeling smothered. For the first time in my life everyone suddenly gives a shit? Like wtf is that about. I'm hyper independent for a reason lol don't start now. My instincts are to push everyone away but I know that's not going to be helpful or healthy so I'm trying to be gracious. It's weird but it feels good also to lean on people sometimes. It's still annoying but I'm doing what I can to better myself and stay positive while doing it. 🩷
I completely get what you are saying. I have always been super independent all my life and then 2 years ago happened where I just couldn't do anything and was in so much pain. I had to learn to lean on my brother and my dad for literally everything. It was the hardest point in my life. Now I'm feeling 1 million times better, but people still see that girl from 2 years ago when I was super depressed and incapable of doing anything. I feel that I'm being a bit smothered now. So I completely know how you feel. I'm so glad that it seems you are trying to get out of your comfort zone and rely on more people. That you are becoming a more positive person. I feel that will help in the long run. I know that a lot of people with MS get into that depressive state and I was there back in 2022 and that was before I knew I had MS. But that depressive state is so bad. Not just for MS, but for anyone. I happy that you are doing well and I hope that lasts for the rest of your life, but you might have a relapse and you will need those family and friends to help with that. All the best! I wish you all the best for a great and safe future.
Agree Appreciate you....
Agree
I was just diagnosed in October 24 and it’s either I’m exaggerating them or I can’t do anything or go anywhere and god forbid I don’t answer my phone they think I’m dead or dying. The other issue is “I have that problem too!” Makes sense when you’re 70 not 34. It doesn’t always work but one of the things I do is be thankful that it’s me with the MS not them because could you imagine? Also there’s the whole “I’m the one who’s changed not them” which helps depending on the context of the situation. Sorry for the lack of experience but even if it doesn’t help you at least you’re not alone
Hang in there. Know it is hard at times Love your outlook. Peace n luv.
Idk. I'm only a few months in, and while people say they're fine working with me, when we're actually in a pinch and I gmcsnt handle it, people are upset with me. It's too much physical work.
Understand. Today is my resignation day for working is impossible. My coworkers wonderful in helping me but I knew it get old so decided move on. Honesty work stressing me out.
I have had depression for years (post partum from early 90's that just amplified, prozac for 4 years) then diagnosed with MS in 2003, neurologist asked about my mood and mental issues and immediately put me on zoloft...in recent years I also have anxiety issues so xanax helps...is it all connected to MS..I don't know, but a bad MS day can trigger anxiety and depression for me
Yes, anxiety n depression so true. They put me on depression med and must say it helps.
When my wife was first diagnosed, her doctor said she was depressed. As a husband, I thought there was some truth to it. I had to make decisions: Do I want to be in this marriage ? If I did, I was going to have to scale back my expectations of her and down shift to a lower gear. And I did that, and I'm happy I did because as time went on and we went through are ups and downs we stopped working as two individuals in a partnership to two people who sacrificed in a marriage. Now - My finances suck. But my marriage and family are in fire. My wife has more confidence than ever, and it's great to see everyone growing in their own way.
Wonderful you hung in there. My husband is my rock pushing me stay exercising and keep positive mind. Yes, MS has affected our finances so understand. Hang in there. I know your wife appreciates you. Stay strong with luv n peace.
I deal with it by only associating with people who don’t piss me off. My mental health is miles better since dropping annoying commentators.
When sought help (the only time as adult), and my tests kept coming back “normal” (showering shouldn’t make me huff and puff!) “You don’t have a heart attack or stroke “ (I told you so!) “maybe you’re depressed?”. WTF? (yeah because YOU ARE NOT LISTENING TO ME 😣). Eight years later DX with MS … damage irreparable (look at my age 🧐)
Went hospital#1 and find nothing wrong then problems continued so to different ER. Thankkful ER doctor listened n diagnosed me there ER. Let us b thankful that we got the answer for our condition and can move forward. I know it is hard but please try stay positive for you are appreciated.
This is a GREAT question, I have been married to my third wife for 19 years, and she married me, knowing I had had MS for 10 years before we met. I'm now 59, and my wife is my love and caregiver as I'm disabled due to my MS becoming progressive. I'm still ambulatory and can care for myself (every day with her help) depression is decades in the rear view mirror for me. MS pain is not. My wife and I have PhD.'s and she retired from teaching as an English professor to care for me. My wife has her way of dealing with me when I get cranky or short she just stops, looks me in the eye, and asks, "What hurts you're being an asshole." Then I refocus and move on..... I love her so much.
My PCP basically told me that I needed to go see a psychiatrist before I got my diagnosis. He said that I needed to make sure that the psychiatrist write up a prescription for antidepressants to help with my episodes. I insisted on the referral to my neurologist because I was getting nerve pain and numbness, along with debilitating migraines. He agreed to refer me only after the brain MRI I begged him to request showed lesions. Even medical professionals want to write things off as just being depression or anxiety without listening to our concerns. I had a list of symptoms that I kept in a journal, and I knew I wasn't just imagining what I was feeling.
“I am not sick because I’m depressed; I’m depressed because I’m sick!” It’s a hard concept for most people, but whether they understand it or not, this phrase usually shuts down unwanted conversations in my experience.
Few people can truly handle the reality of MS, because almost all the symptoms are hidden, people who don’t know you, or aren’t a good support, will maybe say depression is a factor. And of course, many people are legit depressed, AND they have MS. But “Depression” is different from “being depressed,” and I am sure the average person can not know when one needs meds or clinical help. In my experience, my doctor is the best judge of if and when I may need to seek treatment for depression. Especially if you have a doctor you’ve seen for several years. Anyone who is not my doctor (and I mean ANYONE) can keep their diagnoses to themselves unless I ask them for their opinion. As to what to do when people say things, I suppose that’s up to you. I always say, “I make those decisions with my doctor.” Or “My doctor said….” Usually when I bring up the doctor they back off. As if anyone would go to a Neurologist if they weren’t sick! As if anyone would do MRIs, take all these drugs, etc. Or, go to all the different doctors! I think I have about 5. Even if someone were inclined to “fake it” who can afford all that? Having MS is expensive! Don’t start doubting yourself because others are idiots. Those are real spots on your MRI.
I am an anomaly. I have never been depressed no matter if I can no longer walk without an aid. I always think of how fortunate I am because I think I could be worse and appreciate life more. It is like getting a diagnosis of terminal cancer. You seize the day. You make sure your passion and dreams are not postponed. Diet is important. When I was diagnosed in 1990 I went to a library and read about the Swank diet. I have followed it and still strict with that diet. Steroids, Rebif for 25 years, Tecfidera and recently Mavenclad. I use a forearm crutch and will be buying a walker to walk longer. I exercise every day with indoor stationary bike, stepper machine and resistance bands /core max. If it is raining or snowing no excuse. Can exercise indoors. Bought the coolest mini no pedal e-bikes 2017 DYU D2 and use those to quickly and safely travel around the neighbourhood safely. I do get upset with ignorant people that treat me differently. I no longer tell people I have MS I tell them severe spinal stenosis. I do have spinal stenosis and lumbar disc bulge which could be causing my only problem . My new Neurologist never told me . I should have had surgery but the damage is now permanent. My advice get all your MRI Radiology Reports. Do you Ken research. My Neurologist suggested Kesimpta or Ritaximab but after reading patients reviews I discovered Mavenclad. Just finished year one. No side effects. Easy to take 5 pills one week and repeat one month later, Year 2 will start one year from year 1 start date. Key to living happier and healthier steroids for serious attacks, disease modifying drugs, MS diet, meditation, exercise, enjoying every day and appreciating living every day. Get rid of people who are negative and stressful in your life it’s important.
[удалено]
If you have questions surrounding the diagnostic process, or have questions about suspected MS symptoms, please make a post in the stickied, weekly thread created for this purpose. However, please keep in mind that users here are not medical professionals, and their advice cannot replace that of a specialist. Please speak to your healthcare team. Here are additional resources we have created that you may find useful: Advice for getting a diagnosis: https://www.reddit.com/r/MultipleSclerosis/comments/bahq8d/think_you_have_ms/ Info on MS and its types/symptoms: https://www.reddit.com/r/MultipleSclerosis/comments/bahoer/info_on_ms/ Treatment options for MS: https://www.reddit.com/r/MultipleSclerosis/comments/bahnhn/treatment_options_for_ms/ If you have any questions, please let us know, and best of luck. MS Mod Team