Just need to vent...

[Boymom123]

Last night we went to a get together at a friends house. It was fun but I got very irritated at a friend last night. She was talking at first about me going to kickboxing. I politely said no and gently tried to steer the conversation away from it saying I wanted to try yoga instead. She mentioned it again and it was all I could do not to scream at her and say " I prefer not to kick things because my whole leg and lower body will vibrate when I do that do you flipping get it ?"

Then she was talking about her approach to eating and how you will feel great once you start doing it bla blah blah....and I said (in a normal friendly tone of voice) that I have enough hoing on with my body right now so I think I will enjoy this brownie and she just brushed me off and said you don't have anything wrong with you. Are you kidding me?

Then I found out that she told someone else I had MS. It's not a secret and I am not trying to hide it but it wasn't her place to tell. It just makes me mad to see everyone else living their perfect lives with no clue what I am dealing with and then to make flip comments? Is she serious?

Thanks for listening.

boymom123

[keyannabis]

People don't understand

Hey there,

Sorry to hear that some people's insensitivities toward things they cannot see has affected you like this. I have had very similar experiences with family and friends pushing their ideas about what is happening to me onto me, and what they think I need to do or not do in order to get better. I've had many people tell me if I get more active I'll get better. I've been told with counselling my anxiety and depression will be helped and I will feel better. So I've found its just better to try and understand that these people are simply unaware how their comments affect you, they only know what they, themselves have experienced. They don't understand that normalizing what happens to people suffering with chronic illness actually hurts and makes our pain feel even more invisible. It's easy to become frustrated, or resent people like that, but try to be understanding of them as that is what you are wanting from them in the first place. Right?

It's no easy thing, any of it. And my sympathies are with you, I hope it is somewhat comforting to know you aren't the first or only to experience this

This article gives some insight.

http://asweetlife.org/feature/15-thi...sible-illness/

Peace, love & happiness to you <3

[Perennialz]

Hi Boymom, and man I know how it feels to get an ignorant remark or several lobbed at me.
People I work with are all guilty of it too.
Just because others can't see what I feel on a daily basis other than the crooked walk is one of my pet peeves.
The others are like, "Why can't you do anything about it?", You need to get a Rx for that is another good one, I guess my MS specialist prescribing me with the drugs I'm on now is just for show, the real ones I'm holding off on for the future. "Well the steroids you were on before helped you, why not now?".... guess steroids are the easy button for ones who don't know the real dangers of over-use, and mind you, I have mentioned about the dangers of overuse of steroids to the same people who keep telling me that same line.

The award goes to..... " How long will this problem of yours go for?"... like it's the stomach flu, or a cold. " Do you have FMLA?' to the one who knows darned well I do because he processed my paperwork to HR.

[SNOOPY]

Hi Boymom123,

It just makes me mad to see everyone else living their perfect lives with no clue what I am dealing with

There is no such thing as perfection, no life is perfect. Everyone you see, stranger or someone known to you, has "something." It could be health issues, relationship, mental health, job, or any number of things.

Many times the things that are said, is the other person's insecurities about themselves or fear of ending up like the other person. In your case, your friend may be afraid of Multiple Sclerosis and may believe if you ate the way she does you would be okay.

Because you know eating healthy cures you of everything and keeps you from getting serious health issues <sarcasm>

Your friend honestly doesn't get it or understand MS. That's okay. For someone to truly understand they would have to have MS and I would rather not see someone I know get this disease. Unfortunately, a long time friend of mine was diagnosed last year and I am waiting to hear about another friend

[hunterd]

my favorite is the people at gas station who give me dirty looks. For me having my wife pump the gas while I sit in the car and wait. One day the guy on the opposite side of the pump repeatedly gave me dirty looks , while my wife took care of the gas, about the third time he did this. I rolled down my window told him that I had MS and that I was wheelchair-bound and that I would be more than willing to trade that for the ability to pump gas. And after I thought about it for a minute, I rolled my window back down and proceeded to tell him that if he was so against her pumping gas, then he should have taken care of it. After we left, I could not help but wonder how bad he felt about everything.

[JerryD]

Hey great thread and great responses. You guys really said it all plus some!
Now... lets get to kicking this MonSters' butt. Since, we can't fight back physically, lets fight this fight with our words and thoughts.
Like never saying that you are 'OK' with it. Like never saying that MS doesn't have you. It Does! Don't be a hero with words 1 This MonSter is wrecking many people's lives ! And until we get a true 'curing treatment', we will continue to accept that what we have, now, is good enough. And the current treatments aren't good enough! They are like treating cancer with band-aids !

[poohb3ar]

aren't 'normal' people wonderful???

sorry to hear that you had such a trying evening when it should have been a relaxing one with friends.

it's so hard for others to even begin to know what we're going through with MS. thank goodness for this site where we can connect with each other!
hopefully, your friend was just trying to be helpful.
i've had many well meaning people give me advice, articles, medical journals, even vitamins, 'cures' etc for MS. i think most mean well, just don't know what to say or do.

though there are the 'others'. like i found out recently about family members who have been talking for years about how i use my MS as an excuse to be lazy!!!
and here i thought they were finally understanding my plight and being nice and not embarassing me any more for not cleaning my house spotlessly like they do or help hand wash all the dishes after our get togethers (of over dozens of people!)

the truth really hit me when one of my SILs came up and brought her own towels and sheets to use! i guess i don't wash my well enough for her!

sometimes you just have to smile and go on. you're just wasting your breath trying to educate them on MS when some of them (not all) don't listen or care.

sorry, guess i just need to vent too!

i pray that things go better with your friend or that you find friends who love you just the way you are!

take care & God bless ya!

[DonnaD]

Just like this vent thread... I always try to act like "no big deal" (I don't want sympathy), but then I'm annoyed when people don't realize how limited I am.

Last year we had a family BBQ in a park. I limped into the park and sat at the picnic table exhausted. My perky sister says - Oh, here's a good sitting job for you (putting meat and vegetables on skewers), like I'm a kid and she's making me feel good with a "job". And what she doesn't realize is that after walking across the park in he heat, I didn't have even enough energy for that sitting job.

I walk pretty poorly. I had to stop driving. I only like going places with my husband or kids (in their 20's) cause they don't offer to help me walk or breathe (it's a joke, I breathe fine though sometimes people act like I'm a vegetable), but I have no problem telling them if I need help. I hate when people treat me like an invalid jumping up to get me something (before i ask). I hate asking. So I either do it myself and it's hard or I do without.

That's the problem. I want to be treated like a regular person. So people think I'm anti-social cause I don't participate in a lot of things. Or, I don't stand around chatting (when I'm standing I'm always looking for a place to sit, or at least lean).

The best thing I did this year (or worst). I made a summer pool membership for my kids without me. My kids are 14-24 so they don't need me there with them. I never liked swimming. It's not "good for me" cause I'm not a good swimmer. It's an outdoor pool with a long walk across the grass. It's hot out. I have to get a ride from a neighbor and stay as long as she does... I have a very long list but you get the idea.

Just enjoying this vent thread. People are always suggesting things for me.

[Boymom123]

Thank you

Thank you everyone for your understanding, your comments and your shared vents Of course, as with everything, time gives you some perspective. My friend is very self-centered and has had a course change in life where everything revolves around working out. So be it. I choose to be healthy but to also enjoy my life as it is, because I have no idea what tomorrow will bring. So thank you all

[poppydarling]

How I relate to all of this :-)

Especially DonnaD!

Now that I've gotten a little bit older, and have been diagnosed for 15 years, my approach has changed a little bit I have given myself permission to be humorous or even a little flippant in response to ignorant or thoughtless comments. I consider this advocacy as it brings people up short and makes them understand – or at least pause a minute to reconsider their assumptions.

I recently posted on Facebook about going to PT on my scooter. I felt like a wet noodle, barely able to press the lever to go forward (let alone get through the hour of exercises). I was passed by a very fit doctor in his 40s who rushed by me saying, "I could use one of those!"

One of my Facebook acquaintances posted in response, "Oh I probably would say something like that as a joke. I'll think twice now. When I see people like that, it just makes me grateful for my own health."

So glad my challenging illness can be a chance for you to pat yourself on the back for your good fortune. Sheesh. So I posted that we all have something (thanks Robin Roberts) and I'd rather have my something then her something. I added a