Skip to Accessibility Tools Skip to Content Skip to Footer
Frustrated Friends & Family: The Impact Of Their Comments

Frustrated Friends & Family: The Impact Of Their Comments

Since I’ve been sharing my battle with MS, I’ve been fortunate to talk to many people about their own struggles (which is great, because I see everything I write as the beginning of a conversation, not simply me telling you something. I don’t want to be talking at you, I want to be talking with you, even if we never actually speak. I want it to feel like that because I’m not an expert, I’m just like you). Recently, while talking with a few MS Warriors, I noticed a common issue that I thought would be great to discuss. One we’ve all dealt with at some point, the impact that small comments and advice from friends and family can have on us.

When friends and family are fed up

I’ve touched on the topic of unsolicited advice in the past, but this time, I’m talking about something a little different. I see that past article as talking about people that are really attempting to help you. What I am talking about here, is not just advice, but also comments, from friends and family that are a bit fed up with your disease. “Maybe if you exercised more”, “You always seem to have these problems when I’m around”, “Of course, I didn’t think you’d make it anyway”, “You look fine”, “Your problem is you take too many medications”, “suck it up”, “maybe if you were more positive”. Sometimes there isn’t even anything verbal, sometimes it’s simply a look, a roll of the eyes. These comments, tips, and expressions all have one thing in common: our illness has inconvenienced you.

Plans don’t always work out

It’s happened to me too, many times, usually with family more than friends, which seems to be common with many of us. I’ve had plans, and instead of canceling, I actually give it a try and it doesn’t work out. I have to leave early, or I look pained, or have some other difficulty. Things don’t work out the way people thought they would, I’m not acting or looking the way people expected, all because of my illness, and then I get a snarky comment. Wow, nothing like making a sick person feel down. It usually ensures that I won’t even try the next time, I’ll just cancel or not even make plans. Which will inevitably create a comment down the line about how I am never around, which is always a real face palm moment for me.

How these comments affect me

You start to feel like you can do nothing right. That nothing is good enough. We already feel isolated because few people can actually understand what we go through. When someone gets frustrated and makes a comment, it can be the straw that breaks the camel’s back. I get it, you’re frustrated, but if we are out, making a go of things, you have no idea how hard we’re trying. When my illness is suddenly more visible, making a nasty comment or a passive aggressive comment is only going to worsen my condition. Many a time have I had to deal with a passive aggressive comment from a family member. “Oh, it must be me” or “This only happens because of me” NO, it happens because I have an incurable and wildly unpredictable illness.

We’re trying so hard

Instead of sticking up for ourselves, more often than not, we’re just going to take it to heart and feel even worse than we already did. We’re always trying so very hard to be normal, to be like you. Yes, you’re frustrated, but we’re even more frustrated. A quick comment that you may deem innocuous can destroy us. There is a reason so many with MS suffer from depression, these small remarks from friends and family 100% contribute to and worsen that. I really can’t emphasize enough how much this can affects us, how it isolates us. Even now, I can almost hear certain people saying “oh, I guess I’ll just walk on eggshells around you”, which is both them missing the point and a sign of how much this behavior affects me, that I immediately hear that in my head.

Think twice about what you say

So what do I want out of this? Well, I want people to read it and think twice about what they say to people. Remember that just because we may look OK, doesn’t mean we aren’t struggling within. A smile masks a world of misery. I realize this is more of a rant than I normally write, but consider this venting for my readers. Many of you want to say this, but can’t. Well, I hear you, you aren’t alone, this happens to me too, and I will gladly speak up.

Thanks for reading!

Devin

My Other Articles On MultipleSclerosis.netFollow Me On Facebook

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Cynru
    1 year ago

    Thanks Devin, my MS Specialist gave me some great material about MS and it was for family and friends. I was truly surprised when my family looked at me and said, “ok” without even looking at it. I’m not bitter or angry but I do get frustrated at times. I enjoy reading your post because you don’t sugar coat things you just say it.

  • Cynru
    1 year ago

    I’m fairly new to this site but have found it very informative and so grateful I’m not alone. I was diagnosed with MS 2 years ago and I’ve been told to SUCK IT UP so many times by family. I never had anxiety I was a counselor and helped those with anxiety yet I get anxious just thinking about going out to eat with my family. I stay home and don’t really talk to anyone because it’s easier as I frustrate others due to my hearing loss. Thank you for sharing this.

  • Devin Garlit moderator author
    1 year ago

    Thank you Cynru, unfortunately, what you’ve experienced with your family is very common for many of us. A little education can go along way, sharing some information about your hearing issues could be helpful and help folks be a bit more understanding. Even if it doesn’t, remember that you aren’t alone and there are many of us here that understand exactly what you are going through!

  • HANKMAUREEN7Y
    1 year ago

    HERBAL

    I started using multiple sclerosis (MS) herbal remedy i purchased from Best Health Herbal Centre January this year. I only used it for a month and two weeks, my condition changed automatically, all my symptoms are gone. Remaining positive have helped me during this treatment. Now am living MS FREE.
    Hope this will help somebody, remember, do your own research and make your own decisions based on information you have received and digested. Thanks to Best Health Herbal Centre for their amazing work. Forever Grateful!

  • Kritty
    1 year ago

    Hi,
    In response to HANKMAUREEN7Y – Regarding the Best Health Herbal Centre. I looked up the website there not much information other than to fill out their order form and place an order. I’m curious and interested in trying this product but not without knowing the cost. Can you advice how to find out the cost prior to filling out an order form? I’m very reserved when it comes to entering my info on a website especially one I’m not familiar with and then give out my credit card information etc.
    Thanks,
    Kritty

  • mollyculelove
    1 year ago

    Thank you so much for this. I was out with my family three weeks ago; my parents and my ten year old nephew. I was rushing to get ready so I wouldn’t make us late and I took a hard fall in my bedroom. I didn’t bother to tell my mom because I new she would freak out as this was my third fall I have had in seven months. The whole weekend all I could think about is the lumbar puncture that I was going to have to have on Tuesday morning which would be my third lumbar puncture within the span of three months time. The first LP was a bloody tap with more blood then spinal fluid and they didn’t check for o-bands, second LP was a dry tap where I was completely un numbed and the doctor proceeded to go in my spine two places several times and I felt everything until I screamed for her to stop because the pain was excruciating. Based on my brain imaging my neurologist already knows I have MS because in a little over a year between 6/4/16-9/25/17 I went from having 5 white matter brain lesions and a rare .7 in a million migraine condition since I was 2 called opthalmoplegic migraines, to now having over 22 (they stopped counting at 22 lesions) lesions, active plaques, and Dawson’s fingers on my brain. So now completely TERRIFIED of gettting another LP performed (despite getting Botox every three months since I was 15, and epidurals every two months, and every other procedure under the sun) it’s all I can think about while I’m the car with my family and i was thinking about the fall I just took because it twisted my neck and head. I don’t remember what started it but me and my dad had an exchange and my dad made a remark to me, “why are you always so angry all of the time”? And that hurt. Bad. I pretty much shut down. My nephew doesn’t know about my MS yet…at the time I didn’t want to scare him without difinitively knowing, as his mom died when he was 1. I found out last Friday that the O-bands are in my CSF and I do have MS. And you are so right..words do hurt. Especially from family when they are all you have because you are isolated from friends. And it’s hard to actually say out loud and verbalize “I have multiple sclerosis” but for the friends that I have reached out to and have tried to tell or be vulnerable with about the fear and uncertainty and to even show those ugly pieces of you that maybe they aren’t accustomed to seeing or might not even know..boy does it hurt when they turn their back on you..or not even care enough to return a text. Or cut you off completely because they don’t want to hear anymore about your sickness. Yea I may come off as angry sometimes but it’s probably because I’m riddled with fear after being blindsided. And pain. And sadness. And trying my best to be with my family and put on a happy face and not make the day about my disease or scare the crap out of my 10 year old nephew until I get the test I have to have to be put on a very strong chemo drug that will hopefully stop what’s eating away at my brain little pieces at a time. Whoever said that sticks and stones rhyme lied.

  • angilynn77
    1 year ago

    All of this broke my heart all over again just like every time my spouse has had a long day, a difficult &/or sickly one(3rd heart surgery 6/6/17) guaranteed something will set him off & I bear the brunt….not swear words just simple everyday words like why don’t u get up & clean; can’t u go out & get a job. Chastising & berating & belittling me with words that could be jumbled up to be meaningful not permanently heart breaking no matter the forgiveness given. I was finally getting a mean streak kind of handle on feeling confidently set in life for the FIRST TIME in my life & boom. Course correction. At times I feel its cost me being treated/regarded with a humanly dignity as I do my God’s honest best to for him.
    I don’t feel I’m a very adept/successful parent but I know I’ve done some measure of parenting right when not one of my children has showed an ounce of treating me even close to this way…….confused on repeating things for me a lot but respectful loving & caring still. Isn’t that all anyone really asks for/seeks & deserves?
    Much Love & Respect,

  • sarah
    1 year ago

    Thanks for sharing. For me it has made it more of an emotional battle, going from 25 yrs as a cardiac nurse, to unable to work d/t numerous affects from the MS, to being talked down to because sometimes you forget what you say, instead of them trying to help me. I feel like I’m being dismissed as the scattered, no longer to having the intellectual conversations, to being talked down as if I’m the child. Then when I try to interact, if I get some details mixed up, sometimes my husband will call me out & say “no, that’s not how it went”, making me look even more incompetent than I already feel. All the while making me more introverted, & I was never introverted. So, oh the struggle of MS is real!! To keep from being made I’m embarrassing my husband, 2 teenage boys, & keep people from feeling sorry for me. I’ve lost that girl I once used to be.

  • Joelle Buck
    1 year ago

    ” Rue this” I find myself making extra effort even though it’s hard with my advancing disease that to what somebody is telling me and what they’re trying to say I repeat what my understanding is back to them to clarify and give them a chance to communicate what message it is they’re trying to send yet when it comes to me I feel that I repeat myself I repeat myself I repeat myself I can’t make it any simpler than what I have told them I speak slowly and make eye contact keeping it simple I don’t have the extra energy to keep doing this I feel like I am spinning in circles and yelling into Canyon or nobody hears me goes Echoes Echoes into nowhere it is greatly appreciated when somebody finally does hear me so thank you very much for sharing this this is where I do get my support because it is other people experiencing the same way and things that I do on a daily basis it’s just not my frustrations building up inside of me ready to explode like the volcanoes on the islands in Hawaii

  • Devin Garlit moderator author
    1 year ago

    Thank you Joelle Buck, appreciate the comment! I too will often have to stop folks, and need things re-explained. Communication can be a very difficult issue with MS, for many reasons.

  • Kritty
    1 year ago

    Devin I love reading your blogs they are so “on point” and genuine. Thank you for sharing your story. I’ve found this particular topic is one that so many people living with MS experience and really sincerely wish those that do not have MS could take the time to educate themselves in order to learn how to accept the things “WE want to do” but no longer can do. I constantly ask my family to research and educate themselves if they really care and want to learn what it’s like to live with MS. Not because I have MS but for them as well because I wouldn’t wish this on anyone. I’ve been trying to get my family to understand the effects of fatigue as well as other MS symptoms I have experienced for at least 10 years. All I ever ask or expect from my family is when I say I can’t, please understand I sincerely cannot. Don’t make me feel guilty for saying “no”.
    Yes, I would love to have fun for one day without having to suffer for 4 days or weeks later, who wouldn’t? Everyone thinks they know how I feel. When I tell them…..I can’t I don’t feel well or I’m too tired. I get the sentence that makes us all cringe…..“Well you look fine to me”. Those who do not have or understand MS are clueless. UGH….So annoying. My philosophy is….you can lead a horse to water but you can’t make them drink it. That being said the lesson learned for me is, “No one cares more about you than you yourself.” No excuses for being insensitive with words and attitude toward someone who is struggling with a chronic disease, the materials are easy to access for anyone and if they really care about you they would realize that the way they react or treat a person with MS has an emotional adverse and long lasting effect, very hurtful.
    I’ve been so overwhelmed by demands made by others and feel guilty if I don’t comply but unable to express how I feel, especially to my spouse and grown children. Your words are exactly how I’ve been feeling but unable to express. I’m going to print out your blog and leave it on my dining table so it will be read either by accident or on purpose. Subtle hint Ha-Ha.
    Hopefully by reading something written by someone else from another perspective will sink in. Thanks so much for your blogs, they are always very helpful. I look forward to the next one.

  • Devin Garlit moderator author
    1 year ago

    Thanks so much Kritty! Very much appreciate that. I do hope that others will be able to share this with their family, for some reason, I think it always sinks in a bit more when it’s not in our own words.

  • Kritty
    1 year ago

    Hi Devin, I agree. Family seem to be the most insensitive and the hardest to connect the dots and realize that the person we once were are no longer who we are. It has been my experience that family have a tendancy to “take things for granted” for lack of a better saying but the only one that comes to my mind right now. I just spent the past two days helping others instead of taking care of myself. I feel guilty if I say no and then suffer from fatigue for a week after. Not quite sure how to stop crossing that line and put myself first.
    BTW not one person to my knowledge, has read your blog on my table yet. And two of my three kids have been here since Friday. It’s less than arms reach away from my spouses laptop that he is on every morning before I get up, yet he hasn’t seen or read it. Hmmmmm…..maybe on purpose??? Perhaps I should put it in large print with all capital letters and hang it up on the fridge. LOL

  • Julie
    1 year ago

    At first my mom was sending me all kinds of email. You know the ones I’m talking about, Stop drinking diet coke (don’t drink any soft drinks), get your silver fillings removed (ummm, no).. Etc, etc.

    Now she buys me things she knows will help me. The most recent is a heated, magnetic blanket. She knows it will end the pain in my legs. I forgive her because she is my mom and 80 years old and she feels guilty because she knows I inherited this from her side of the family.

    Others are harder to put up with. “Let’s not park in handicap, the walking will do you some good” Well it might but after walking all through the store or mall I will probably have to crawl to the car afterward.

    I feel like maybe I am doing something wrong. Maybe I should get out and run like I use to (hahaha). After a day with friends or family giving me suggestions is it any wonder I would rather stay away?

  • SweetSunshine
    1 year ago

    Hi All to respond to Kritty!
    I share your feelings, I have always been extremely active between Work-Children-Charity work-Helping my Elder Parents-Involvement with the School and it’s functions, a lot of crafting and close involvement with Grandchildren cooking, baking, crafts, and so on.
    When I started expressing a lot of pain and discomfort “Out of nowhere” I was quickly reminded that everyone has pain and discomfort that were all getting older so quit being a whinnying baby. After 8 years of not being a Whinnying baby and keeping it bottled up inside, an event in my sons life that took us all by surprise, was what I referred to as the last straw, he called me at work that doesn’t normally happen, so I was alarmed, he was served with Divorce papers and we had just celebrated the first birthday of their precious baby girl. It was just the shock and stress that threw me into one heck of an Anxiety Attack, and I ended up in the Hospital, with my normally good health, the Dr. Ordered an MRI to rule out a Stroke. With the MRI in hand the Dr. Entered my room to give me the news after questioning my recent physical activity. I explained to him that after my Hysterectomy I knew Menapause would be right at the door, and I attribute pretty much everything to that. He was less than pleased that I hadn’t investigated the signs because I was after all in the Medical field. With several family members in the room I held my tongue for the moment, He refereed me to a Neurologist for a final confirmation and treatment plan, My Neurologist expressed to me his concerns that my primary care hadn’t responded to the very notes made in my patient file over the last 7 years, he felt per the Primary Care Dr.s Own notes that an MRI Was definitely needed. However we can’t go back now, and I was fortunate to have been referred to an Amazing Neurologist who’s specializing in MS and the study of upcoming New Treatments for RRMS. I would have thought that at that point “Our Loved Ones” would go a little easier on me! But I would be Wrong. Instead my Sister fired off with her Treatment Plan Of “Tough Love” i.e DONT GIVE IN TO THE DISEASE. -FIGHT IT. -KEEP PUSHING YOURSELF.- QUIT SAYING HOW TIRED YOU ARE -QUIT TALKING ABOUT IT -YOU NEED TO BE MORE ACTIVE-I HAVE A FRIEND WITH MS AND SHE DOESN’T NEED AS MUCH SLERP AS YOU- SHE TAKES KICKBOXING AND WORKS OUT- OMGGGGGGGGG
    How I held back from just Slapping the Crazy right out of a couple people I will never understand. And yes I continued work for as long as this body would tolerate it. If I Comment on being tired I hear yeah I’m tired to. If I’m hurting really bad and Comment on that( because maybe I can’t participate in something ) than I hear yeah I’m hurting to but I’m going. Omg again. **ITS NOT A CONTEST PEOPLE**
    I decided that my Favorite Line is. Unless you’ve walked in someone else’s shoes don’t Comment on how the fit is!!!
    It’s more than important for people around you to be informed about a Medical condition you have for so many reasons- like things to watch for. Or just Support for the things you have to deal with Physically and Emotionally. We have learned that MS has so many different ways of torture, and not everyone will go through all or some of the many side affects of the Disease. Some of us are fortunate enough to have multiple Diseases, or Medical Conditions I Myself have MS & Fibromyalgia Diverticulitis Vertigo Lol Lol what a great combination. I’ve found that it is so very important to keep my Emotions in check, it’s not always easy when we’re forgetting things or Can’t find our words or when we do they don’t come out right or we’re corrected like a child or bullied because we’re not up for a task or a previously planned Event. I’ve found it to be easier for me to invite Family and Friends over for Dinner Party’s, because I can plan for them in advance so that if I’m not at my best on that day I’ve had time to prep some of what I needed to do and I’m not overwhelmed when they arrive, I still love to go out for Dinner and Functions but I’ve learned how to be in control of what I want or can do without listening to someone else’s expectations or comments. And If I wasn’t successful in expressing this to them, than they have been given “Distance” instead of an Invitation. So very True surround yourself with people who love and appreciate you not people who bring you down or hurt your positive motivation.

  • Devin Garlit moderator author
    1 year ago

    Thank you SweetSunshine! Many of us understand exactly what you have gone through, which seems amazing doesn’t it? As you have mentioned, the best thing you can do for someone with a chronic illness, is to learn about it. I started writing here because of just this situation, I wanted people, my own family, and others, to be able to have some insight into what we go through. To understand that, no, you aren’t as tired as us, that my pain is not the same as everyone else’s. That tough love and being overly positive won’t fix all my problems. I’ve even written about how important it is for our family and friends to learn about our disease (https://multiplesclerosis.net/living-with-ms/the-1-thing-you-can-do-for-someone-with-chronic-illness/). Bottom line, you are right, we need to surround ourselves with the right people. Having a chronic illness really does help you identify the truly toxic people really quickly!

  • Devin Garlit moderator author
    1 year ago

    Thank you Julie! My mom is very similar, always wants to help, somehow. I do wish that people could understand how their comments affect us, as you say, it’s no wonder we want to stay away. I think that’s a pretty common sentiment among folks with MS.

  • dtwhite1
    1 year ago

    That was a rant???? LOL? Thanks for sharing and putting into words what we all have had happened to us. Why should we apologize for having this disease? Maybe rude people should start apologizing for their inappropriate behavior. I can’t imagine they would act that way with anyone else. I don’t have the energy to waste on this kind of mindset. I choose my battles wisely. I appreciate the friends who say it’s so nice when you are here. It’s just not the same without you! (After missing several get-togethers). I don’t have a solution or know what to say in that situation. Sometimes saying nothing is enough.

  • Devin Garlit moderator author
    1 year ago

    Thank you dtwhite1, I hear you, sometimes the battle just isn’t worth the energy (especially, at least for me, energy is always hard to come by). I do think that sometimes they don’t realize their behavior or at least the potential impact of their behavior, and that’s something I hope that can be changed.

  • MArroyo
    1 year ago

    Devin, I can always relate to your articles and appreciate you more than you know.

    Yes, as you do, I have a very close family member who can say very mean, thoughtless things. I am often a little late because I have MS bladder and bowel issues that slow me down. Simply stated, I can’t get out of the house if I’m stuck in the bathroom. It does no good to try to make me feel worse about it. Or blow the horn at me outside my house (seriously?)

    My doctors say anxiety only worsens the bowel and bladder issues. I’ve tried to explain this to her and she says she understands, until she gives me a hard time next time it happens. I love her and understand her frustration, as I’m frustrated too.

    A healthy person just can’t understand what we go through.

  • Devin Garlit moderator author
    1 year ago

    Thank you MArroyo, very much appreciate you reading! It’s so difficult for others to understand what we go through. I know I am hoping some friends and family will read this in hopes that they will “get it”, if not fully, then at least enough to think some before they act!

  • Pam
    1 year ago

    There’s a name for all those snarky, condescending comments – Microaggressions- the everyday verbal, nonverbal, and environmental slights, snubs, or insults, whether intentional or unintentional, which communicate hostile, derogatory, or negative messages to target persons based solely upon their marginalized group membership…I just learned about these at a harassment seminar at work. I thought the name microaggressions was spot on for all the comments we put up with.

    I’ve been blessed with some really good friends. The other friends who make the comments…they’ve been pulled from the garden, no weeds grow in my garden.

  • drmak
    1 year ago

    Excellent point! I still need to do a ton of weeding! Lol

  • Devin Garlit moderator author
    1 year ago

    Thank you Pam, “Microaggressions” is a great term and perfect for this behavior!

  • Debrahoff2
    1 year ago

    This is so true and I am so glad you wrote about it because not only do I feel lonely because I feel some of my close friends are.tired of my MS , but I also feel let down because at the same time I can’t help what I am going through when I am not feeling well so naturally I hibernate . It is a vicious cycle. I wish friends and family umderstood that it’s not all fixable with a gluten free diet. Without realizing it, those people I love make me feel like my MS is my fault. I know that alot of it is that those who love me feel hopeless that they can’t fix me, but I wish they could.understand how hurtful comments or not following through with plans to get together or just not checking in once in a while can be.

  • Devin Garlit moderator author
    1 year ago

    Thanks you Debrahoff2, this is, sadly, something that so many of us with a chronic illness experience. I can think of a few friends and family that I hope read this post when I shared it with them, because I know so many of them don’t even realize they do it.

  • PegLeg
    1 year ago

    having MS for over 30 years,, I have heard it all,, my own mother accused me of faking it, to get attention,,
    my family tries to understand,, but really do they ever really do ?.. my grandkids seem to get it more then the adults..a

    and my dog does,, she senses when I am having a relapse, and is there for me,,

  • Devin Garlit moderator author
    1 year ago

    Thank you PegLeg, as hey say, you don’t “get MS” until you get MS. I’m not sure that anyone can really understand if they haven’t experienced it. I will agree with you about dogs though, if anyone understands, it’s been my pups, who seem to know, sometimes even before I do, that something isn’t right with my body. They really are amazing.

  • A Friend
    1 year ago

    Great article! This is so true. After 7 years of since my diagnosis, I am just now beginning the “isolation” phase of this disease. In order to avoid the ugly comments, I have slowly began to separate myself from my friends….and these were long time friends that I thought I would never experience this type of behavior from. But when one of them started commenting to the others “she never comes to anything I invite her to…” and then I caught a rolling of her eyes one day when I mentioned “MS”…I knew I had to separate myself from that negative behavior. I was happy and relieved that I was strong enough to remove myself from that friendship that had become toxic but I was sad to feel like I was starting to isolate myself. Be strong everyone!!!

  • Devin Garlit moderator author
    1 year ago

    Thanks so much A Friend, unfortunately you’ve experienced what so many of us experience. If I had a dime for every time I thought “wow, I thought I knew them”.

    Thought I’d share another post of mine that relates to this: https://multiplesclerosis.net/living-with-ms/ms-turns-friends-strangers-strangers-friends/

  • Bettybeem
    1 year ago

    Thank you for the article. My friends may not understand but they are supportive . They are thoughtful about what they say. There’s no eye rolling or other body language to indicate impatience or intolerance. Unfortunately this is not true of my sister, my only family. She has chosen not to learn anything about MS. She has chosen not to be of any assistance. I cannot rely on her for anything. Her verbal comments have been extremely insensitive and cruel. Her behavior has indicated angry at my inability to attend functions with her or to participate in activities the way she expects me to. It has gotten to the point that our relationship is toxic. At the recommendation of several professionals, I have severed my relationship as it was impacting my health so adversely. My family of choice is one that exudes love, care, and acceptance.

  • Poll