Keep Your Comments to Yourself! Looks Ar... - My MSAA Community

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Keep Your Comments to Yourself! Looks Are Deceiving

BeHealthyNow
BeHealthyNow

I'm getting very frustrated with people who feel the need to compare or discount symptoms, especially at the doctor's office. Anyone else feel like this? mswellnessproject.com/keep-...

39 Replies
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Hidden
Hidden

I guess I dont know what you mean

BeHealthyNow
BeHealthyNow in reply to Hidden

Hello! I mean I find it frustrated when I go to the doctor to discuss my symptoms and they get brushed off because, " I have people with MS worse than you." "I get tired too." "Well, you look like you are walking ok while you're here." Or, random people who happen to know you have MS, so think it's ok to comment on your health or give you advice. I'm so happy you didn't know what I meant! Hopefully, you've never experienced it:-)

Hidden
Hidden in reply to BeHealthyNow

It seems docs sometimes want to see things in action if u just go in before it gets to bad they do tend to brush it off

greaterexp
greaterexpCommunityAmbassador

We hear you! It is frustrating. I tend to chalk it up to ignorance, because few people are really educated about MS and its true, varying nature. I'm fortunate that most of the comments I get are based on that, and are truly well-meant. I feel so badly for those who get mean comments. Even as a nurse for many years, I didn't "get" MS until I got MS. But I do get weary of all the "cures" I get directed to including bee stings, bee pollen, going barefoot, essential oils, barley juice, and the list goes on forever. To those, I just thank them and say that my doctor and I have a great plan.

Penelope from "Positive Living With MS" had a great post on Facebook today which stirred some lively discussion! She joked that she was sure she got MS because she didn't pass on that chain mail she got in high school.

Our doctors should never be dismissive about our symptoms, but there are many who don't know much about MS and pain, for example.

I never heard of Positively Living with MS! Hilarious about the chain mail!! I'll have to check out that site. I have a FB support group that trys to keep it positive too, so I will totally appreciate that. I laugh as well about all the off the wall cures people tell me about. I get those a lot because even though I take meds, I'm big into good nutrition etc to help with my symptoms. So, because of that people thing I want to do bee sting therapy. This was seriously the discussion at my family labor day weekend BBQ this weekend. Meanwhile, I was running around my deck with one of those electric fly swatters to kill the yellowjacks. The irony! LOL!

greaterexp
greaterexpCommunityAmbassador in reply to BeHealthyNow

Isn’t she terrific! I adore her sense of humor!

I don’t have MDs that do this.

I did not enjoy when someone told me so and so had MS and was still working, which I think is great for her, but my lesions say no. I also didn’t appreciate the prediction that pregnancy would make me feel awesome as a way to minimize the misery I was in at the time. But, those were just stupid people, zero chance I would see a doc that talked to me like this. I stay away from the MS center for this reason also.

BeHealthyNow
BeHealthyNow in reply to kdali

I can't work anymore either. In the beginning, I got- it must be nice to be home all day. I wasn't mad though because my friends really were wishing they could stay home. I was like, I'm not home for fun you know. I don't mind the innocent or stupid comments as much as I mind the dismissive ones. I think that's what set me off to write that post. Totally agree about doctors. My regular neuro is very nice and does not blow me off. My experience was with a second opinion doctor at the new MS center that I wanted to try. Obviously, I never went back.

kdali
kdali in reply to BeHealthyNow

Yes! The dismissive comments end up forming walls for me. I can educate stupid, but I can’t fix hateful. I hope you never need to go back!

bxrmom
bxrmom in reply to kdali

I had an OB years ago that suggested having a baby would make me feel better! NOPE! Not interested in kids, never have been. The look on her face, oh boy lol

BeHealthyNow
BeHealthyNow in reply to bxrmom

Good for you for knowing what was right for you! Feeling better is not a great reason to have a baby. We don't have kids either. We made a conscious decision about it after I was diagnosed with MS and APS (blood disorder) at the same time. I was't sure I'd remain healthy enough to manage kids. I don't regret it. I might regret not having grandchildren!

bxrmom
bxrmom in reply to BeHealthyNow

I have a niece and 2 nephews to love. After being diagnosed with MS, I was sure I didn't want kids. But I have felt this way since I was like 15-16 years old.

BeHealthyNow
BeHealthyNow in reply to bxrmom

Same! One niece and two nephews! Plus, 2 god-daughters and six honorary nieces and nephews of our best friends. So, we get to be the fun aunt and uncle, lol! That works for us.

Bwine
Bwine in reply to BeHealthyNow

Every one is different but I knew I wanted kids from a very young age. If I never did anything else in my entire life, I wanted a baby. That was when I was a very young teenager, way before I was diagnosed. But, after diagnosis I got married and had that baby I had yearned for. He’s an only child. We felt he completed our family. He’s now 22 years old and has the sweetest girlfriend and now I’m hoping for grandkids one day. Not now, but one day.

BeHealthyNow
BeHealthyNow in reply to Bwine

So happy that you were able to realize your dream and have the family you always wanted. It's nice to see that having an illness doesn't need to take away your dreams

kdali
kdali in reply to bxrmom

Lol! Mine told me it probably would make me feel better, but that was after we decided to go for it...she wasn’t trying to sell me on it 🤣

You could have been a surrogate! 😬

I’m sorry you have Dr that dismisses you. All my doctors are completely involved in my care and they ask me questions and if they see something going they look for a way to treat it.

For example my neurologist has me seeing a neuro rehab Dr and they consult with each other on my treatment.

All of my other Dr will defer to my neurologist to make sure what they’re doing coincides with her treatment

My rheumatologist is also involved with my health. He has me seeing a cardiologist for my heart because I have been on hydroxychorquine (Trumps favorite drug) for over 25yrs and he has my eye dr send him a report after each exam I have done. He and my neurologist are on the same healthcare network so they can see and communicate with each other.

Then I have 2 more eye doctors who are specialist that I see who communicate with each other about my eyes because I have a detached retina and I have vision in one eye

I also see a hematologist who works with my neurologist because they both have me doing bloodwork every 3 months and they send each other my bloodwork results. My hematologist monitors me closely because my ferritin (?) levels are all over the place so it looks like I’m severely anemic . At one point my ferritin levels were lower than a cancer patients that they thought I was bleeding internally so I had to do a colonoscopy it showed I wasn’t so I’m constantly having my iron levels monitored and if they dip below a certain level I have to have iron infusions

As for people I have only a few people who actually know I have MS and they don’t tell me what I need to do. One exception is my mother she reads all of this stuff and then tells you should read this person book they did this or that but I just ignore her or she tries to get me to take all kind of pills cuz she read its supposed to help MS . She now on this kick to get me all of this exercise equipment telling me it does more than the one you have.

Other people who don’t know I have MS and ask or have asked whats wrong I tell them I injured myself. Some people I have met knew right away I had MS so I would tell that I did.

But I do hope you can find a group of doctors like I have who are hands on in your treatment and not dismissing you

Sorry for the long post

That's wonderful that you have such a good care team! I have pretty good doctors. My issue was more with one doctor (an MS specialist) who completely blew me off. I do get the comments from my doctors (not neuro) about my "weird" symptoms-but they're not wrong! Other comments are mostly by acquaintances but I've had some on MS forums too. Everyone in my personal life knows I have MS. I went for so long doing well though that nobody really pays any attention, which is great. I've had it 18 years and in the beginning I missed 4 months of work. So, all of my clients and the entire salon I worked in knew.

I understand

I am sorry. I am newly diagnosed. I have been fortunate that my doctors have listened to me with regard to the MS.

My family tries to be supportive etc. but my father, who is my biggest fan, has completely dismissed the whole situation. He will literally interrupt me if I start talking about how I am feeling; about my injections... really anything I say is disregarded. I have a very good relationship with my father and have been really taken aback by his response and it has hurt me, a lot. I think maybe he doesn’t know what to say which I understand, but he makes me feel like I just need to get over it and it hurts.

I hope things get better for you.

jorrell
jorrell in reply to Tulip77

Old age and the associated mental issues can cause what your father feels. When my father was alive and active, (and I had MS), he would insist that we go to play baseball, at that time I was terrible, I couldn't pitch, I couldn't catch. But what my father remembered was the truly insane pitches and catches that I could pull off. Finally, I was able to convince him that I knew how to drive cars on road courses, he came along a few times, and was finally convinced that I was good for something. He passed 3 years later from Parkinson's.

Tulip77
Tulip77 in reply to jorrell

You may be right, plus I don’t think he totally understands the diagnosis. He hasn’t known anyone that had it so there would not be a reason for him to, but he doesn’t ask me any questions either.

BeHealthyNow
BeHealthyNow in reply to Tulip77

It sounds like maybe your Dad doesn't know what to say. It must be hard for a parent to watch their child get an illness and know that they can't help fix things. He's probably a bit in shock too about your new diagnosis and hopefully will come around once he wraps his head around what's happened.

Bwine
Bwine in reply to Tulip77

Maybe it makes him upset that his daughter has MS so he doesn’t really want to talk about it. Like, if we don’t speak of it it will go away, or that it’s not true. He loves you and doesn’t want to see you hurting. Maybe, you think?

Tulip77
Tulip77 in reply to Bwine

Very possible!

Always!

You know, the sooner you get used to it, you can move on. After decades, "but you look so good". Or "How Come You Can't...?" Unless they have it too, they probably won't get it.

I know exactly what you mean. It seems everyone who has had a friend or relative with MS, sudden declare themselves MS EXPERTS! I really don't want to hear their stories. I just want them to shut the f!!! up.

Exactly!!

I have learn to try to stay positive through all the negative. When ppl try to give me 100 different things to try or do. I usually tell myself I am trying to keep up with the 10 things I already have and can’t add anything else to the list until I complete those. Prayers are with us all. Love you my MS team...

I stopped seeing my new holistic dentist because, when she asked me what was wrong with me and I said MS, she told me she had a patient with MS, and she was fine.

BeHealthyNow
BeHealthyNow in reply to IFwczs

You'd think a doctor would know better :-(

IFwczs
IFwczs in reply to BeHealthyNow

That's why (or actually one of the reasons) she is my former doctor. Another extreme our doctors suffer from is blame everything on MS.

BeHealthyNow
BeHealthyNow in reply to IFwczs

Lol, funny you say that. My MS doc thinks everything is not MS and all my other docs blame MS 🙄

Absolutely! Has taken THREE YEARS to finally feel I’ve developed a workable relationship w my Neuro.-and I go every 3 months. It really takes time to get to know one another. I always felt frustrated after my appts up until this year, like I wasn’t taken seriously. Now, it feels like a joint effort. Maybe covid changes sparked renewed importance in listening to pts and trying to get to know them & their lives vs making assumptions. Telehealth combined with less in office visits may have also helped management wise on their part. It is a hard reality that even MS specialists really don’t know what is going to help.

I know that for me, I had brush offs and non/misdiagnoses for over 30 years prior to MS dx so MY trust and expectations were badly jaded. Now that I had a real visible issue (MRIs like a Jackson Pollock painting) and there still was no solution to make it go away?!

As for others, friends/family/acquaintances, I just come from a place of understanding that they don’t get it & it’s ok. My husband & 2 boys get it for the most part as they live it right along beside me. I am grateful for that because I know some aren’t as fortunate.

I agree, I think the telemedicine helped a bit because there is such focus when you are staring at each other talking about things. I've actually had the same neuro for 18 years who always listens and tries to help. I wish we would talk about symptoms more but I realized that is partially my fault that we don't. I'm also okay with family & friends, thank God. What set me off to write my blog was reading through all the MS forums and seeing the amount of frustration and anxiety over this subject. It only happened to me once at a second opinion neuro and the experience was awful!

Some people will never get it. Some are honestly trying to help because they care about you. And some, well, you just can't fix stupid no matter what. I didn't see where you might have said how long you have had MS. I was diagnosed 15 years ago. After a while, you learn to nod your head and move on. It's not worth getting frustrated over something you can't do anything about, it just zaps your energy, and for most of us engery is a coveted commodity. This is the place to vent when the need arises, thank you for trusting us with your feelings.

If I had a doctor like that I would have a talk with them and then change doctors! That's insane!

I don’t necessarily want anybody to tell me “you look so good” or “you look like you’re doing good,” but I would rather that than a complete stranger telling me that I do not need to park in a handicap spot at the grocery store. That I don’t look like the kind of people that park in those spots and get this - MY CAR DOES NOT LOOK LIKE THE KIND OF CAR THAT PARKS IN THOSE SPOTS! What? What on earth does the kind of car I drive have to with my health? People should learn to keep their opinions to themselves. Strangers AND friends! Or even family!

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