I know this is the opposite of what this discussion is about, Stef, but I had someone say to me today, “It hurts just to look at you.” I don’t think they were trying to be unkind, but it did make me feel even more miserable, even though I didn’t think that was possible.
If we break down and cry whenever we are in pain…we wouldn’t have any more tears left…and be seriously dehydrated!! I think that’s what I’m gonna tell the next person who says I look fine!
Natalie said:
Hey Stef
Yes I can relate to this, nobody can see it and thats the problem. I am sure people still think I am making the pain sound worse than it is even though I went through an MVD.
I have just become some person with "oh no not that again" "are you not getting better?".
Unless I break down in tears the pain cant be that bad, I struggle and and struggle and push myself just to do the easiest task of making dinner.
Oh if they could have it just for 1 day....
Chris,
My Dad made a comment similar once after we had lunch. About 20 mins. after eating a real solid meal, like I did that day, an attack comes on. He witnessed it while he was trying to make conversation with me afterwards.
My oldest daughter seems to go back and forth between compassion and disdain for me because of my condition. She says that I am not like other Moms, that she is tired of my illness, etc. It hurts my feelings. But, whenever I put myself in her shoes, I understand. She is 15. She needs me to be there for her, not the other way around.
Yes, I know. They don’t mean to be unkind. They just lack filters and don’t understand, I guess.
I wish I had a solution as to how to handle others. This affliction is such a hard thing to explain, especially when one is in pain.
Chris K. said:
I know this is the opposite of what this discussion is about, Stef, but I had someone say to me today, "It hurts just to look at you." I don't think they were trying to be unkind, but it did make me feel even more miserable, even though I didn't think that was possible.
I know what you mean about not bothering to google: I found out about a year ago that my husband had been going around with a genuine sympathetic and caring attitude, telling all our friends that I had ‘fibromyalgia’! Needless to say we are now separated!! Elaine
Valerie said:
I know...have been walking the dog and look tanned so people think that I look great. My own family has not even bothered to google the term atypical trigeminal neuralgia. I am the oldest and have looked after my younger sisters my whole life ....but have decided to stop doing that. The only way I can deal with this is to treat them as "casual acqaintances" when I run into them. This way my expectations of them are lowered.
This small piece just about sums up the original point of this post beautifully, Jackie, and is worthy of being shared on our “Art and Poetry” page, truly. Thank you for posting.
Jackie said:
JackieI am not the same as you,
My illness is not one you can see,
My condition is not on view,
Please don't judge me,
I would not doubt you.
Yes this is great Jackie. Stef I'm glad you mentioned the art and poetry page/group/ That's where I should have posted "Walk in my shoes". I guess I still can. I forgot there was such a group/page.
Sheila
Yes, Remember that they say that the average industrialized country’s citizens function on average on an age 13 level. (In general. Of course there are exceptions.)
Jackie said:
Well, that's a very telling comment about society!
Stef,
You really are great to have the insight to realize that your 15 year old lacks a bit of foresight right now. EVERY 15 YEAR OLD IS EMBARASSED BY THEIR PARENTS, so your illness doesn't make you any different. lol. Also, now that I am on the other side and my girls are having their own children, I can see that because they had to do more around the house due to my illness, they now have more homemaking and coping skills than their peers, and spend a lot of time teaching others how to do the very basics like cleaning and meals and even interacting socially.
Hugs, Sheila
Oh, I love you, Sheila. I never thought about it that way. Thank you for caring enough about me to make me feel better about my situation as a Mom.
((Huge Hugs))
Sheila said:
Stef,You really are great to have the insight to realize that your 15 year old lacks a bit of foresight right now. EVERY 15 YEAR OLD IS EMBARASSED BY THEIR PARENTS, so your illness doesn't make you any different. lol. Also, now that I am on the other side and my girls are having their own children, I can see that because they had to do more around the house due to my illness, they now have more homemaking and coping skills than their peers, and spend a lot of time teaching others how to do the very basics like cleaning and meals and even interacting socially.
Hugs, Sheila
Pretty soon now Stef, you won’t know anything either. Until she gets to be about 21, then your intelligence will return. Cuz at this age they start thinkin they know everything and we (as parents) know nothing! When this would happen to me with mine, I would say to them: Amazing how I got to be my age without knowing that… Or I would say, honey I been around the block a few more times, I think I know a little more about this than you do! LOL
Stef said:
Oh, I love you, Sheila. I never thought about it that way. Thank you for caring enough about me to make me feel better about my situation as a Mom.
((Huge Hugs))
Sheila said:
Stef,You really are great to have the insight to realize that your 15 year old lacks a bit of foresight right now. EVERY 15 YEAR OLD IS EMBARASSED BY THEIR PARENTS, so your illness doesn't make you any different. lol. Also, now that I am on the other side and my girls are having their own children, I can see that because they had to do more around the house due to my illness, they now have more homemaking and coping skills than their peers, and spend a lot of time teaching others how to do the very basics like cleaning and meals and even interacting socially.
Hugs, Sheila
I can totally relate to this. I always get this feeling that people look at me and think she looks fine. Or..Oh the pain cant be that bad.....Well listen here...walk just one day in my shoes and you will feel that agonizing pain I feel constantly everyday. I am to the point where I dont even want to talk to my friends about it. I get this feeling they are sick of me complaining.
And when you say childbirth, I always tell my husband when it is really bad that I would rather have 100 children in a row than feel this pain.
And, the burning of my face....it is horrible. So I can so relate to this post. Winter is approaching here and that cold damp iowa weather will make it so I can rarely leave my house. Sometimes not even to get groceries.
I hear ya, Billie. I am glad I work part time now, especially when winter comes.
This whole thing (the condition itself, this site, these problems) is very new to me, so I greatly appreciate reading about what I can expect. I've already begun to experience some of these things as I've recently begun letting family and friends know what's going on.
On the one hand, I've been very fortunate: my primary doctor diagnosed me pretty quickly, and referred me to a pain specialist in the group, and the two of them have been very proactive and so far a treat to work with. Also, my wife is a hospice nurse and specializes in pain management, so she knows and understands many of the things I'm struggling with.
Here's the downsides I've experienced, from the social perspective, thus far: "Oh, you don't want to be on all those medications, you should just drink more water and exercise more (really? if that were the case I'd drink water by the gallon and quadruple my exercise routines ...)." "I've never seen you complain about this before ... (well, what's gained if I say my face feels like it's on fire while being stabbed with a screwdriver, all. day. long)." "I've never heard about this, but maybe if you tried to reduce your stress, it would go away (yes, we all should reduce our stress to be more healthy overall, but this is in a world all its own)."
Now, I haven't said any of the things in parentheses; yet. This is still new to me; I was prepared for a sprint and now realize this is a marathon that may never end. I worry that I don't have that type of stamina, and so I'm really worried that at some point, my social relationships may suffer. That being said, this site (which I only discovered yesterday) and this thread in particular are very helpful and I appreciate the opportunity to read other people's experiences. Up until I found this site, this whole "journey" has been incredibly lonely as I've never talked to someone socially who had even heard of it.
Hi there.
Vent here. Vent cuz if you don't you will take it out on someone, somewhere and they really just don't get it. They mean well. They all know someone who had something that was somewhat kinda like this. You know a headache, TMJ, migraine, etc. and if you just do xyz it will go away. Dr. Oz said so.. or Oprah or well you get it. I don't tell my co workers since I get the joke from my supervisor "So you face hurts? Well that makes sense cuz looking at it sure hurts me!!". I had to keep sharp objects out of my hands for a while around him. This is the same guy who isn't sure I should keep my job because he was on neurontin once and it made him loopy. He "worries that I am on so many drugs".
I have assured him that I don't take any pain killers until I go home. Try working around that. Yeah I know, he is a dick. But really he doesn't know. Just like I didn't know till it happened to me. So stay in touch here. We do know, and we are a totally appropriate place for stories, vents, questions and community.
sincerely,
your fellow traveler,
Raven
Folks here is something that is making the rounds on Face Book:
"It's hard to explain to someone who has no clue. It's a daily struggle being in pain or feeling sick on the inside while you look fine on the outside. Please put this as your status for at least 1 hour if you or someone you know has an invisible illness (Anxiety, Bipolar, Depression, Diabetes, COPD, Emphysema, LUPUS, Fibromyalgia, MS, Arthritis, Cancer, Heart Disease, Epilepsy, Autism,TN, IBS, etc.) " Never judge what you don't understand."I know which of my real friends will copy"
I added the TN just so my friends would understand that I may "look fine" but it is a battle every single day.
Jerry
Thanks for sharing that here. I got that message and posted it to my status. It's so true. I hope others will post it. We need to make people aware of "invisible illnesses". I have a number of the listed illnesses, but I look fine...whatever that means. I don't understand what people expect us to look like to qualify as suffering and sick. As I said in an earlier post, I guess I should stop asking "what do you expect me to look like" and start asking "what does appearance have to do with how I feel?"
Best wishes, Sheila
I just joined this site earlier today due to return of TN last week...I was dxed back in May I believe but thought it was related to something else since it seemed to quit after I had sinus surgery...but it is back and with a vengeance...I am a soprano singer/ musician that works as a church Liturgist/Cantor/ Musician. I worked this past weekend in the throes of all this madness and my accompanist was so astonished Saturday night at how well we did, she said no one would have ever known that you are in the worst pain of your life! I am now telling people around me to "google" this condition to learn about it. I have a question...does this thing ever affect anybody's voice? I struggled a wee bit but fought that off this weekend...I will not accept people who say "it is all in your head"...tell them to "google" it and then come back and tell me it is all in my head! For comic relief here....it is all in my head...the left side of my face! But it is maddening....
Completely and Totally agree 1 million percent
I hear these exact words from my mother almost everyday. It's been 3 years of feeling like hell and living with the burning fires of hell.
My heart goes out to her and to you and to anyone who is suffering with this terrible monster of a desease.
Thank you for posting,
Luisa
Hello, Lui.
I had time to drop by today. My pain has escalated recently, and I must speak with my Pain Management Specialist.
I randomly saw your post and I hope that somewhere researchers today are working to try to find out how to put out the "burning fires of hell" in our faces.
Blessed be,
Stef
Lui said:
I hear these exact words from my mother almost everyday. It's been 3 years of feeling like hell and living with the burning fires of hell.
My heart goes out to her and to you and to anyone who is suffering with this terrible monster of a desease.
Thank you for posting,
Luisa