How to get others to understand...

[poppydarling]

D'ya know, before it was visible, and even after it was kind of undeniably visible, I did my level best to pretend nothing much was wrong.
No, I'm fine, just hurt my foot a bit. Kid of got a sore back and so on.

Now the reality of this disease is long past disguising and with the 20/20 vision of hindsight, it was a mistake to gamely struggle on, without ever telling everyone how bad it was.

It takes people a while to catch up. You can't go from oh I'm fine to ooh, I'm using a wheelie walker, suck it up, and when you see the worry and awful sympathy in their eyes you can't blame them.

I do believe most people are good people. It is my fault that I did not trust in their inherent decency and unconditional affection for me.

It was, in my case, my own unwarranted feelings of shame, not anything from anyone else.

Oh how I love you, thinkimjob -- purely platonically, of course I used to get so mad over what I perceived as lack of understanding and compassion, and I still do. I believe we're on this earth to befriend, love and support others, making their time (and by extension, mine) on the big blue ball a bit easier, but I realize those are high expectations developed by my Christian upbringing. Once my symptoms got more obvious, I realized with great surprise that the first person who needed to understand and accept myself was me. It took quite a long time to get here, but now I'm not as concerned if others understand or not because I'm my best carer, supporter and fan, and always will be.

[KSeraSera]

First, I think you're great because I can't even imagine taking care of 2 young children and shoveling and everything else you must do. You sound like a very strong person, maybe not physically but your character. But, I also know how damning that can be when trying to get others to understand our invisible symptoms. I have a "well, it needed done so I did it" mentality, mostly because I live alone. I never asked for help before MS and seldom did after. So, my family really couldn't understand how physically bad I felt because I was still doing so much of what I did before.

I don't really know the answer, because I still refuse to be helpless, it feels to pathetic. But, I have started asking for help from them at times. The problem then is if I say I feel bad in one way or another, they think it never goes away. Then when I am back on track, they get really confused as to why yesterday I couldn't, but today I can.

I guess for me the only thing I know for sure is they are at times as incompetent in handling my MS as I am, but that they do support me and want to help and understand. It's a roller coaster for us, so imagine their confusion. If all you can do is explain that there is no consistency, there is no normal, and ask them to stick near by and go on the ride with you. Then, collapse on the couch and tell DH to go do the dishes!

[KSeraSera]

I thought of something I was told early on by a physical therapist regarding the fatigue. I won't explain it near as well as she did. She explained that the fatigue wasn't a tiredness of the body that most people think of when they hear that. It was a fatigue of the brain, that manifested in the body. She said that the brain needing to send the messages over and over and over, across damaged nerves, became fatigued and it affected how the messages were sent, slower and slower. So, moving your arm over and over, eventually it gets slower and slower and more tired, because the messages are too.

This helped my mother to understand, although the problem was in my brain, that's how it affected my body. The brain and nervous system seem so foreign to her and so complicated, and me too. Probably a lot of people. You forget it runs your whole body, mostly automatically. She couldn't understand why I couldn't stand in a store after awhile and had to sit down. But, that helped her to see I couldn't overtax my brain getting the message to my legs not to collapse.

Don't know if this will help, but it did make it clearer to her and I.

[tammypack]

understanding fatigue

[QUOTE=TheMisses;1471316]I have been diagnosed with MS for about 3 years now and have had a hard time dealing with how the people around me don't REALLY understand how I can't do some things, or how I get tired etc. Most of my symptoms are hidden and to the people I talk with and interact with day to day would never know I have MS. I used to think I was lucky to have no visible symptoms but I actually think having all invisible symptoms is worse! Nobody understands the constant brain fog that I am in and how I can't remember anything. They don't know how standing for long periods makes me tired beyond belief or why I can be moody.

My husband has been gone for a week traveling for business and so I have been home with my two little kids, while one had a stomach bug, we had 2 snowstorms resulting in 36" of snow that I had to shovel alone all on top of all the other daily household tasks that tire me on a normal day.... I am exhausted beyond belief and he doesn't quite "get it" how difficult the past week has been for me!

Along with my husband, my friends never seem to "get it" when I can't help do what they need or can't go places they want to go. I end up being seen as lazy or rude for not doing things that people want or need me to. My memory being bad makes it really difficult to

[tammypack]

understanding fatigue

My friends and family trys to understand and act simpathetic. But how can they understand when I don't. Its not just being tired its a total loss of self. I can no longer be who I was. And I feel trapped by no future.MS is life changing in all aspects of my life.

[golfwidow]

D'ya know, before it was visible, and even after it was kind of undeniably visible, I did my level best to pretend nothing much was wrong.
No, I'm fine, just hurt my foot a bit. Kid of got a sore back and so on.

Now the reality of this disease is long past disguising and with the 20/20 vision of hindsight, it was a mistake to gamely struggle on, without ever telling everyone how bad it was.

It takes people a while to catch up. You can't go from oh I'm fine to ooh, I'm using a wheelie walker, suck it up, and when you see the worry and awful sympathy in their eyes you can't blame them.

I do believe most people are good people. It is my fault that I did not trust in their inherent decency and unconditional affection for me.

It was, in my case, my own unwarranted feelings of shame, not anything from anyone else.

Thinkimjob -- I am just now (after 10 years) letting friends know when I am having a flare or bad day. I have been like you " oh, I'm fine, just little aches and pains" - but this last flare affected my walking, my balance and my fatigue level --- So far they seem okay that I shared. They have said to me that they really couldn't see any change in me over the years --- that is because when I am having a hard time I haven't shared or left the house !!! No more, I don't want to be always talking about my health, but when it is bad I am going to say the truth -- ( I think )
For almost a week now I have spent more time in bed than out of it. But when I do get up and around I have been with my friends and family - then I go collapse again. I don't want to miss anything !!
Off to bed !!

[Thinkimjob]

I used to try to hide how awful I felt from the neurologist. No, no, I'm not that bad, really. No, don't ask me to walk in a straight line, or even walk.

She asked me, "Do you still do your own grocery shopping?"
"Well, yes," I said, being Ms Perky, and then I realised what a bloody, agonising struggle it had been for such a long time. Shopping cart for a wheelie walker etc.

You can only crack hardy for so long.

[Thinkimjob]

I lie to my neurologist. "No, I'm okay," I say, which is plain stupid when a) you're not, and b) you're talking to a neurologist.
"Do you still do your own grocery shopping?" she asked last time, after watching my game attempt to lurch a straight line for ten yards.

"Yes, I do," I said, all Ms Plucky, and then I thought about what an utter ordeal it was, staggering about using the good old shopping trolley wheelie walker, feet not cooperating, and having to stop and start, shaking and dizzy, when people dart out in front of you.

All just to buy a bit of food.

Still didn't tell her, (like she didn't guess) because I truly think at this late stage of the game there is not much that can be done.

All you can do is carry on as best you can.

[cosake]

Sorry that you feel this way, but I totally understand.

I have come to terms with the fact that most people will not understand how it feels to have MS, because they don't have it themselves (just like another previous poster pointed out_. I can't expect someone else to understand, when I myself have a hard time understanding other illnesses, such as lupus (which my sister has), cancer, etc. I can empathize but I don't necessarily "get it".

That being said, here are my two favorite things to share with people. I've had great feedback on both of these from friends trying to understand how it feels.

http://www.howdoesmsfeel.com/how.html

and

http://www.butyoudontlooksick.com/ar...-spoon-theory/

[J-Bo]

I've seen the Spoon Theory before, but the howdoesmsfeel link was a new one on me, and a lot of them made me chortle. Thanks for that, cosake!

[Maple]

"but you look so good" and "if you get more organized it will be fine"

I completely empathize with your experience. I agree that people who do not have MS cannot really understand the invisible effects of MS.

I was diagnosed over 2 years ago and I am a professor in a school of nursing. Everyone at work is supportive (to a point) but the expectations remain the same. And people always say "you look so good...I would never know you have MS". I know they mean it as a compliment but I don't correct them. Its kind of like when you see someone and they say "How are you?". The standard response is "I'm well, how are you?".

I'm not sure how someone would respond if I said, "I'm really fatigued and my legs feel like lead weights." or for me who has a cognitive deficit (which is very challenging as a professor who teaches research and biostatistics) to say "I can't remember the materials I am teaching so I have to go back and review them everyday sometimes every 5 minutes as I work to cue my memory". Or how to respond to my husband who believes I just need to be more organized and stop working so hard (he thinks I do too much for my students).

One way I am trying to help people "see" my invisible effects is by telling them I am struggling and need help. I have never been willing to ask for help in my entire life (foolish, I know) but I am swallowing my pride and admitting I can't do it all. It is painful but I am slowly beginning to admit it to people. I started with my husband and plan to tell work I need an accommodation soon. Just the thought makes me sick to my stomach. But I know what I have been doing isn't working so I am trying this approach.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[poppydarling]

It is painful but I am slowly beginning to admit it to people. I started with my husband and plan to tell work I need an accommodation soon. Just the thought makes me sick to my stomach. But I know what I have been doing isn't working so I am trying this approach.

Maple, if your experience is anything like mine, disclosing to your friends and employer will be one of the best things you will ever do for yourself. I felt like 10 years of stress and weight fell off my shoulders. Ironically, I needed a little less help because I felt so much better! My life has improved tremendously since that point. Everyone has to decide for themselves, but I'm glad I was brave enough to do it (and eventually leave a stressful full-time job as well).