I get the question "How are you feeling" probably every single day from friends, family, acquaintances. I know this is a good thing, and it's nice to know that people care about me, but I don't feel like they really want to hear how I am really feeling. You can tell someone your symptoms for that day.........tired, sore, sad, lonely, weak, .............and you get the response "Well you look great" or the "I'm sorry to hear that". These two responses are getting hard for me to hear because I feel if, I look great, do people think I am just having a pity party for myself? When they say, sorry to hear that, is it just a proper answer to just move on to the next topic? I think it is easier for people to hear me say "I'm Fine" so they can feel comfortable and also truly feel like I am fine. Does this happen to you? Please tell me what you think?
Response to "how are you feeling" - My MSAA Community
Response to "how are you feeling"
I could have written what you did, Timandlisa66. I have a hard time telling anyone other than my husband, sister, and a couple really close friends how I am really doing. I used to tell my mom, but I can't handle the 'smothering.' I know she means well and is only concerned for me , but her response often brings me further down. And sometimes it's harder to pull myself up and out of that place if I wallow in it too long. Most neighbors and friends comment on how 'good' I look: "You must be feeling well. I notice you didn't used both crutches when you walked to the mailbox today." I've learned just to smile at that. No need to give them the lowdown. But I have changed my response when someone asks how I am. Instead of saying, "Fine" I now say, "OK." I'm not fine!!! For me, I feel a tad bit more honest just saying "OK." Great question and conversation topic!
Thanks Tutu, that's exactly it! Thanks for getting it!!! 
I didn't want to sound to harsh. I think I am going to use "OK" from now on unless they ask me to be more specific.
I get the same response, people are always saying how well I look, but as you both have said, they don't understand how you are really feeling. Ms is a horrible lonely disease, I have found nobody apart from this forum understands where you are coming from. I have found that people are scared to talk about it so they change the subject. I blame the media, ms is not talked about enough, if we had cancer it would be different, everyone seems to understand cancer, it is always on the tv. My mum passed away nearly 4 years ago, knowing she could do nothing to help me, my other 2 sisters have had cancer and that runs in the family which everyone understands but try and talk about ms, they shy away from it. Anyhow, now I have had a moan, remember, this site is always here, and it has helped me no end, so let the world continue oblivious to what's going on in ours, and keep smiling, as people have said to me, "you would never know" cheers Jimeka
Fear, Jimeka. Fear of disability, especially brain related damage. People are uncomfortable with how to act around this kind of stuff and have no clue what to expect - simply lack of knowledge. Fear of interaction - of being viewed as condescending, not 'politically correct' etc. Brain injury, degenerative diseases, dementia, autism, mental health, all are mysterious and difficult to understand for those who have no experience of it. All carry stigma. Fear of what weird random unusual behaviours you might suddenly embarrass them with ! I was one of those people who lacked knowledge of these things - I am wiser now. My partner had a stroke, one neighbour has Alzheimer's, another extreme OCD , my nephew has Asperger's and now me with 'this' ! It has been quite a learning curve : ) x
Do you not find that today it doesn't matter who you talk to, someone in their family is suffering from some disorder of some kind. Some families just appear to get hit with one thing after the other and you find yourself saying" never, she/he is the nicest person". My daughter is a paediatric nurse and she comes across a lot of distressing cases, as I am sure a lot of people do who work or have worked in the health service, but she has really had to harden herself off and to me comes across a little un compassionate, but what they have to deal with day in day out, I couldn't do it. It must be hard for you with your partner having had a stroke, remember to take care of yourself too and don't get too drained, or stressed, I know it's hard putting yourself first. God bless Jimeka. I love your user name, I bet you are an angel to your partner and neighbours
One thing about illness - it doesn't discriminate. Background, personality, social or financial status, none matters. Adversity tends to bring people together, seeking comfort and offering support to each other. Who best to help and sympathise, than someone with the insight of a similar experience ? Hence the huge varieties of charities and support groups : )
I have been reading about Compassion Fatigue - it is apparently common in caring roles. I suppose it is a form of emotional self protection. Thank goodness there are strong people who can view things in a more clinical way without the over intrusion of emotions, to get the job efficiently done. My experience with nursing staff has all been good, it is GP's and Specialists that have often shown poor attitudes, condescension and sometimes open hostility. I suspect the huge workloads and inadequate budget will be a contributory factor. I am grateful that hospital did finally resolve the sepsis and not really surprised that my relapse went unacknowledged, when overstretched resources have to be prioritised to more essential, life threatening issues. I have bothered no one for 2 1/2 years, although new, less dramatic symptoms have occurred but did feel that such a major relapse and resulting disability should be brought to their attention this time. I'm not a fan of drugs ( and possible complications from side effects ) but do feel that the stigma of this 'functional' label has been a barrier to being taken seriously when genuinely ill and has prevented access to physio/helpful devices. I was hoping maybe access to physio/possible leg brace might help me get back to work but had to take mutual termination after nearly 6 months off sick. It was clear I was not going to get an adequate physical level back at that point. I still do some self employed work for a disabled neighbour but it is more tiring these days.
I'm definitely no angel ! Just an average person, who doesn't like to see others struggling and tries to help where possible. I have had to scale back my involvement with some of my neighbours since relapse - I find it impossible to physically keep up the level of support I was previously asked to give. I still do their shopping and am available when a genuine need/emergency crops up. It had got quite overwhelming, being called upon at all hours, for minor issues that could wait/ underlying companionship reasons. I have had to learn to make my boundaries clear since then, much to the vocal displeasure of some ! My Alzheimer's friend is by far the easiest, least demanding of 'my people' to deal with. He is a genuinely lovely man : )
My partner's stroke was several years ago - it affected his speech, swallowing, memory and emotions. He did remarkably well, relearning how to talk and swallow, albeit still a little slurred which is more pronounced when tired. I think the 'brain stuff' and similarities in some symptoms has given us greater understanding and made us even closer. We try to look after each other, between our combined cognitive and physical chaos ! He still works part time at 68, as a parcel courier, after retiring from taxi driving. I used to enjoy helping him out but don't often accompany him now - it is not easy, trying to use stick, clutching a parcel/s, signature handset and remaining balanced enough to not frighten the customers ! Imagine seeing me lurching down your drive, with your precious 'fragile' labelled expensive glassware lol !
I don't know about you but I'm finding working in this sudden cold snap of weather super tiring - fell asleep at 9 pm, which is why I'm wide awake at 4 am replying to you ! : ))
Take care, Angela x
Hi Angela, this sudden cold snap is not nice at all. I have an appointment at 9.30 with the physiotherapist in York tomorrow so I just hope we do not get the snow. Looking at the weather, you are more likely to get it. I am going to try the bioness and the Walkaide and whatever else they have to offer, all depends how the RLS copes with the electric shocks. Anyway it sounds as though you are still living a full life, being able to help others. Good job, enjoy. Cheers Jimeka
Fear indeed! That is exactly what it is, especially because it is related to the brain. The stigma is just awful. Trying to get around it now by attending what family functions I can and interacting with others rather than keeping away and allowing them to keep away. It's a bit easier with the younger members of the family, and with that, maybe a bit easier in helping open up a dialogue with others. If even just one person comes around with questions, it will have been worth the exhaustion.
I agree there is definitely a lack of knowledge and people feel uncomfortable with something they don't understand, myself included. Having MS is teaching me to be more compassionate, and learn to sincerely ask the right questions not choose to ignore someone or their illness.
I like your post. I tell people all the time that I don't ask the question to strangers "how you doing". Not that I don't care but it's nothing I can do about how they feel. I know when people ask me "how you doing", I'll be nice and say "I'm good". I said one day if somebody ask me "how you doing", I'm going flip the script and say: I feel like sh*t, I'm constipated, I didn't get much sleep and my legs are very stiff and watch their facial expressions (lol). I know they're just being nice but sometimes I just don't feel it. When I see someone I just say "good morning" and go about my business.
Lol......I love that!! Thanks for the reply!
Yes exactly royjr! Exactly.
Stock answer 'I'm okay, thanks'. It is the 'polite' thing to do ! In reality, no one wants to hear a rundown of your issues and most probably wouldn' t entirely understand ! Consider trying to explain some of the paresthesias ! Those closest to you will hopefully know exactly how you are, by your movement, speech, vagueness etc. without the need for words. We have often discussed the 'invisible' disabilities on Headway. Cognitive issues, fatigue, pain, weakness, numbness, all can be invisible on the surface until they accidentally announce themselves during interaction. We tend to hide these things well.
Anyway, how are you today ? I mean, really ? Angela x
Best add constipation to that invisible issue list - cheers Roy ! : )) x
Yep.......constipation is a big one!!! You guys are too funny!!
Ditto, ditto, ditto to all above replies...EXCEPT when asked by one of my bed ridden patients with MS. He really cared and wanted to know and when I thought I was putting on a good facade for him and all others, he would say " are u sure? I can see you are having a little problem walking today..."
I am going to have to go back to visit him and let him know I am ok...and be sure he is too. 😥
Thanks erash! Your MS patient knew just what to say! This is making me think of the old saying "It Takes One To Know One".
Stock Answer: "With my Hands"
Another Favorite: "I've been worse, I've been better. Today I'm somewhere in between."
Give up believing the will understand, all the above answers and great too.
There is so much we have to deal with, with this crap, why worry about an answer to somebody's question when most of the time they are only trying to start a conversation. I've learned that with family I just say "good or fine" unless they are really wanting to know and want a more "intimate" type of conversation with me. You will know.
Thanks for your reply! I hope I can get past this frustrated point soon.
Love this conversation!! You all said it SO well! Seems we all feel pretty much the same. It is nice people ask how we are doing, but do they honestly want the truth or are they just being polite? I think I will stick with "ok" . Sometimes I just say "I am fine with my new normal." Other than my closest friends and family, who honestly wants to hear about my symptoms? Even when I try and explain my symptoms, it's impossible for people to grasp what we go through internally! Yes I smile, laugh and love life as much as I can, but that doesn't mean my body is free of pain and discomfort. Definitely think more awareness about MS needs to be talked about. This disease has definitely changed my outlook on life. I simply don't care what people really think about me or my disease. I don't sweat the small stuff anymore and make the best of this challenge I have been dealt. We can do this one day at a time. If you have a crappy day(s), remember the next one will be better! I remind myself that even though we have this shitty disease and some days are rough, it could always be worse! Keep hoping and praying for a cure
I wish there was a Love button!!! All of your replies have made me feel so not alone!!! Thank you for letting me share my voice with all of you that get it!!!
I still work and I guess "don't look like " I have MS. I hear all the time "but you look so good!" And "I never would have known "... I feel like I should just get a tshirt that proclaims I Have MS! Fatigue is my biggest problem and people just don't understand. I think I answer "fine " because it's just easier.
Timandlisa66, ASC2, MS-INDESTRUCTABLE, erash, Royer, TuTu, Angelight and Jimeka, it's Fancy. What a great conversation. I applaud Timandlisa66 for writing the post that started it all. On to the post's reply. I believe almost anyone with a debilitating type disease gets the same response from most people. I think the people who see friends or family members that were once athletic, powerful, independent people slide down the disability scale with a debilitating disease like MS are forced to face their own immortality so to speak.
I don't think they even realize they hear what they want to hear or that they do so as a defensive mechanism to shield them of their own fears of disability. When disability strikes a friend or family member they cannot totally ignore it, yet they are ill-prepared to offer the support and understanding required of them. There are often MS Support groups. I ask you how of often do you hear of MS Care Givers Support groups? Let alone support groups for the general public to educate them about disability in general? Even more unfortunate, if they were offered how many people would honestly attend? I bet very few as most people have the mentality that disability/disease will never happen to me. "I take too good of care of myself". Well guess what, I know I took EXCELLANT care of myself, yet it did not stop MS from finding me...... Wow, some powerful ideas to digest....
Interestingly, several mos ago there was an article in the NYT review section about disability. It stated that MOST people will face a disability at some point in their life (some short term --broken ankle, some long term --chronic disease). Some of the challenges, and a few of the emotional mountains are shared among all --too include the stigma. It addressed (if I remember correctly) this very topic --how to respond to the well meaning, uninformed.
That was well said!!! I also took pretty good care of myself. I admit that I was one of those people that thought I was indestructible before I got this disease. Now I have MS and understand how much I took everything for granted. I am a loving, caring, giving person but never really got it until I got diagnosed. Thanks Fancy1959 and erash!!!
HI there, I get this question "how am I feeling" from friends, my adult children and on occasion from my husband.
My usual answer is "I woke up and that means it's a good day".
Also, "some days are better than others and I've not decided which day today is".
I feel fortunate friends and especially my wonderful family care. I generally don't go into details as they, with good intentions, tend to over react and want to see how they can help. I avoid over analyzing their intentions. Too complicated at 71 years old to analyze others
I'm fairly mobile just using a cane and rarely my scooter and have good days in addition to the other type, I work hard at not thinking too much about what I can't do any longer. I avoid in depth conversations with most people as I figure they have their own issues and I conserve my energy for me and mine as energy is a dwindling commodity. I avoid negative people like the plague. I can't allow them to drag me down as it's too hard to climb back up. I usually assume tomorrow will be a better day than today.
I've no words of wisdom beyond these thoughts, but consider myself lucky they care.
Very wise words Purpletustin!
Numerous excellent points there, purpletustin. You mentioned a few things I have just recently come to realize and am working on myself. Thanks.
Wow!! That was great words of wisdom. Thank you purpletustin!!!
Wow, you all said exactly what I was thinking, "are you okay today?" or "can you walk faster?", I hate that one! No im not okay and I'm just strolling ! I'm alive and well (as bitchy as that sounds).
People don't really want to know how we feel. They give me that pity look if i try to tell them. I'm not trying to be rude to anyone here, but with all the doctors and family members asking the same questions everyday it gets tiresome. I tried telling my mom how I was doing, her answer was " walk more". She has no idea how much that hurts, makes me feel useless and that I'm not trying.
If i had one wish just one, I would wish for a cure for all of us. There has got to be something out there to help us.
I'm such a downer, I'm sorry
You're not a downer, Shelly36. And no need to apologize! We all feel that way at times. You're going to hope I can't find my way to this fabulous group of friends on one of my downer days. Maybe I ought to apologize in advance. 😉
Thanks Shelley36!!! My husband has always walked fast. I am slowly teaching him that he needs to slow down if he wants to walk with me. Grocery shopping is just killing him!! HaHa!
Shelly36, I hate that "pity" look. ☹️
I love that question timandlisa66 and honestly, my answer is all based on who asks. My mom and dad asks, lm great, l could be sicker than a dog buy lm Great lol. My oldest calls she wants to know so l tell her, my middle daughter calls and lm ok.. she worries. My youngest still won't talk to me, she says, we are making progress. Shh don't tell her plz My youngest brother asks if lm going to die every time I talk to him, his way of trying to joke it off and l tell him not today. Anyone else its... eh, cause l dont care what they think and they really don't care anyway. They don't understand, and it's hard for them to, it's no fault of there's, we can hardly understand ourselves.
Thanks jesmcd2!! I too have to give a different response to each family member.
I have to admit that MS has taught me something good-something I'm really thankful for. As a kid, I was raised it wasn't polite to stare at someone in a wheelchair, with a cane, etc. You know how honest kids are! If it's the first time they've seen a handicapped person, they stare! They haven't perfected the ability to look away or look right through you as if you're invisible. Well, I'm thankful MS has given me the opportunity to retrain myself. Not only am I aware of those with disabilities and share a smile in passing, but I am aware of the stares and am able to smile in return-a genuine smile. One mother tried to shush her daughter when she asked what was wrong with me. I told the mother it was ok, and that I'd love to explain why I used forearm crutches. It was a simple explanation so the child could understand, but we all parted with smiles-and there were a few people who hung around on the outskirts to overhear what was shared. 😊 I realize they're just ignorant and need some retraining like I did! Too bad it took MS for me to better understand all of this, but...in many ways, MS has made me a more thankful person.
I agree with you Tutu, MS has made me a more thankful person as well. Now I wish there was a Love button and a Hug button!!!
I agree that it is best to share the reality and depth of our symptoms with people who can truly understand, rather than share a whole book with people who, no matter how well meaning they are, simply can't relate.
Sometimes I reply," I'm on the right side of the grass." "Probably better than I deserve!" "I'm hanging in there." For my husband, who is wonderful, but who just can't take all of this in,"I don't have a headache!" Or,"I'm walking more easily today." With him I focus on a positive unless I need him to help me with something I did without help just yesterday. Then I explain why I need help, but only enough to help him understand. I know he's grieving and bewildered, too.
I feel truly sorry for people who just don't know what to say, which I can understand well. After all, what can they really say that would be helpful, especially since each one of us would probably prefer a different answer?!
Coming on this site to vent or even downright whine a bit helps me immensely. It gives me the ability to smile with others and say,"Not too shabby. How are you?"
Thank you greaterexp! I like really like "Not too Shabby"!!!
Someone told me her answer is " the same as yesterday" works for me!
Thanks for your reply Nani5!
My stock answer is some days are better then than others. On top of it I wear an AFO and live in shorts weather 7 months of the year and get asked what's the matter with your leg. This question can come from old friends and people I don't even know. I tell them my leg doesn't do what my brain tells it to. I know all of the people asking the questions mean well so I don't get mad. I don't even tell most of them I have MS because they don't understand the disease.
Thanks for the reply RobertCalifornia!
I always assume that most people don't really want to know how I am. It's a stock question, and I give a stock answer, like "Fine, thank you. How are you?" That is what most people really want to talk about--how THEY are. I try to give them a chance and not let it be about me. On the other hand, if someone I know well seems genuinely interested and not in a big hurry, I might be more forthcoming about how I am. I have to judge by the person's tone and the kind of situation where the question is asked. But 99% of the time, a stock question gets a stock answer.
Thank you agate!
I also have to say, alot of time, l just say fine how are you? And change the subject. It's so much easier to ask about them then to try to explain something they can't always see
Although a good friend of mine got a good taste of my "drunk" walk on Halloween lol she was shocked. She never knew how much l hid it.
I appreciate all of your replies!!! I know my post was asking the question of "How to respond" but I guess I was leaning towards the compassion end of it. I don't know what I'm expecting from people. I guess just a little more understanding! Since our disease is so silent looking, people assume we are fine. I know that I never get to be my old self again! If we are always telling people we are "fine" doesn't that mean we are contributing to the lack of knowledge people have about this horrible disease?!!!
timandlisa66 l find it hard to explain something that l hardly understand myself.? I can explain that l get extremely tired, and by the end of the day lm a shacking mess. I can explain that l gave lesions in my brain that interfere with the rest of my body. And sometimes they get it. Others don't want to get it. Others hear MS and hear death. And you lose them as friends or family because they can't deal. Unfortunately you can't control what others feel or think or there actions. Only YOU can control your feelings, thinking and actions. If ppl are interested in learning about it, you can tell.
And get involved the MS Walk, are you in a support group? Sometimes the MSAA sets up booths for street fairs. Lol yes lm involved in all 3, we even have "steroid buddies"
What you stated above, timeandlisa66, is exactly why I started replying "OK" instead of "Fine." My husband is the one who told me I was giving the wrong impression when I stated I was doing better than I actually was. To good friends I haven't seen or spoken to in a while, I add: "It's been a rough year." But I find many of them don't even know how to respond to that. It's as though the subject is dropped like a hot potato. Can't really blame them. I had never even heard of MS until I was 33 and saw my first neurologist. Had someone told me they had MS back then, I may have tried to hide my ignorance by not asking any additional questions (like "What is MS?"). But these days I kind of prefer the silence over the comments on how well I look or am walking. I find that only really close and compassionate family members and friends, or other compassionate people suffering with similar difficulties, ask probing questions because they REALLY want to know.
I had a good friend knock at my door the other day and she politely asked how I was. I hunched my shoulders and said not bad. To which she replied, "so your still waking up every morning" " you're not good are you" so my reply was " to be honest I feel like s**t" she didn't stay long.
I'm sorry. I hope she was just having a bad day and unable to muster the compassion to be what she felt you needed at that moment.
So Sorry!!!
I think sometimes is ridiculous when someone very close ask me "how are you feeling, how are you doing", if I am not doing or acting as a normal active, fast person, with all behind activities, and I do not see myself looking great. Maybe they should ask what they could do for you or how can I help you today? Invisible symptoms most people do not have the sensor capacity to know the difference of what is normal or what is missing or have changed. Most people do not understand their own behavior, attitude or mood. They do not have any clue of little changes in MS from one day to another. Its not about being lazy or tired or messy for no reason
How someone could say I look fine if I have a pile of papers and others stuffs not done, including dishes at the sink?
About how I am feeling? Most people do not want to understand feelings, emotions, or learning about Neuroscience or Mental Health. But US is the number one on Earth in consume illegal drugs to help to fell well. It would be better if people give more value to the brain and its function. The brain amazing reactions and possibilties. I would like to know more about japonese kampo therapy. All body together.In general this is the good part of all Oriental therapy which gives value to emotions e full body. How are you feeling?
I guess I have another perspective. I have a very small family and everyone except my husband lives far away from me. When I communicate with my siblings, they never ask how I am. I would like to be able to share more with them but don't want to be whiner, especially since they didn't ask. I know they love me and maybe don't want to make me feel bad, but I would like to (occasionally) have them ask so I can share a little if I feel like sharing, like for instance the results of my latest MRI. They don't get to see me so they don't know what's going on. Maybe it's better to get my connections in groups like this.
You're not alone in this, plntlvr. I have 4 siblings-all living far away. Only my one sister asks. Don't know why. Maybe they have too much going on in their own lives?
I'm so sorry to hear that!!
I hope I have this right, and you see your neuro tomorrow. Keeping you in prayer.
Thank you Tutu! I did go see the Neuro and its the same old thing, have bloodwork done to check white cell count and see you in a few months.
Thanks for the update, timandlisa66. So is this a good thing? No concern now and we'll check again later? I hope so.
Reading all the replies to this post it makes me sad to see how much we really do hide from ppl. It's no wonder that ppl are so uniformed. I know in my small town l never even knew of the MS WALK until l wad dx'ed. And what in the h*** was MS anyway? A confused look over my face... There isn't enough info out there for us, let alone anyone else. And unless your touched by it, it doesn't affect you.
So what do we do? Any ldeas?
This will be my 2nd yr volunteering with the MS WALK, and l hope maybe this yr we can get the word out more, and even change where we walk instead of hidden away.
We used to have the MS Walk in our town, but it has been taken because they need to shorten the amount of towns in our area that participate, due to funding. We can due fundraisers on our own, but the campaigning and advertising needs to come out of your own pocket to get it started. ):
Well that kind of stinks timandlisa66 it's hard enough to survive in this day and age.
I live the in the NW where MS is prevalent. More people are aware of it here as someone in their circle has it. We even have a couple MS Clinics to choose from in the Seattle area! But In HI, where I experienced my first symptom and was eventually diagnosed, few people (me included!) had ever even heard of it. I believe there were only 600 people in the whole state with MS back in 1992 or so, when I volunteered at the NMSS. We did have an annual walk. It was well publicized and highly visible at Ala Moana Park outside of Honolulu. Part of me thinks that since MS doesn't affect as many people as cancer, etc., does, people contribute to those larger, well-known diseases than MS. I guess I didn't really answer your question, did I? Sorry, I'm not the creative one in the bunch.
May not be creative but very supportive.
Thanks
I have got to the point where I just answer,
" I have good days and bad days, thank you for asking."
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