What makes our suffering so unbelievable to others?

General
1

Do we really look and act that 'well' that others have such a difficult time accepting that we are ill and in constant pain? We are all either on serious medicine or should be, and serious meds are for serious illness and injury. I read it over and over again, that we are being disregarded, disbelieved, discarded.

A great many of us are injured, use walking aids (or should) have bad x-rays, none of us sleep well, so surely we look 'haggard' much of the time. Just what gives with everyone else?

I just get so disgusted with the gall of those who are closest to us, who should be supportive and helpful to us! I just don't know how we are to handle it.

Any thoughts?

2

This is so true. I experience it everyday. I have lost my bf, my friends, my family and everyone close to me as they don't understand or don't care to try. I think it is laziness on their part. I am some very serious meds and they don't cut half the pain. I am always so depressed as everything has crumbled and fell apart. I wish people would just be understanding and try to be supportive. Walking away at a time of need because you can't deal with me, will never help. I have no idea why people are so insensitive and cruel but it is a horrible fact when you are diagnosed, you will lose people and everyone looks at you different in a bad way.

3

It is very sad to say that nearly all of us are in this boat, and it is the saddest part of the whole thing. Ben surely had a wonderful idea when he started this, imagine the lives that have been saved, the deep friendships that have been forged.

Don't think you are alone, very few that I have known on three different support groups of many different illnesses have not had the care and support that they deserve.

We are here for each other and believe me, it makes all the difference in the world. Come to us anytime, with anything!

Big hugs,

SK

4

Thank you very much. I have had a very hard time finding anyone to talk to, anyone here for me....it is all discouraging. Some FB friend found this group for me and I decided to give it a shot. I have been pretty depressed lately and find myself very alone.

5

I have found people close to me saying…Well I am tired too…I hurt too …my back hurts too…like it is some damn contest who has the worst pain …and yet THEY can still mow the yard…water their flowers… go on bus trips to malls…LOL… they do not have fibro and it seems like they do not ‘allow’ me to have it either…well hunny I would not wish fibro on you and wish I did not have it either…I am way too young to feel this damn old * 47* …sorry for the rant…I overdid it trying to keep up with some nonfibros…

6

I hear those same words Karen, every single day and it irritates me to no end. This is not a contest and if it is I will let them win if it means I no longer hurt. They have no idea and it is being so insensitive saying that as well. I am 36 and with this amount of pain they say I am way too young and that I should "just deal". Your rant hits home and I am sorry that you go through that as well. Hope for many good days for you.

7

I actually can see why they don't believe us. To be honest, If I were not a constant on-going survivor of this crap, I would find it hard to understand all that one goes through because it's a lot to take in. If I were to know/see myself saying I feel the way I feel but living normally (to the eyes of someone who does not know that our normal is not their normal) I'd be like "hell nawww she ain't sick" LOL The word sick implies to most a physical ailment, something seen. Even a cold is seen. FMS isn't to the normal eye esp when they don't know what to look for.

Unfortunately most ppl react to what they can see. FMS is not seen, it's felt. So how can one who do not feel what we feel, be expected to see what we feel and understand it? I mean they physically can't and it's understandable that they can't. Granted it has taken me years to get to this understanding of how ppl can look at us and see a normal person. DOCTORS ARE NOT INCLUDED IN THIS because as a medical professional who knows very well what this condition is, deciding to not believe in it is pure and utter bullshit.

My former BFF could not grasp how I could hurt so much and yet look so normal. I lost her as a friend but oh well. Only the weak can deny something they cannot see. When ppl hear an airplane crossing them overhead, do they believe an airplane is not there because they can't see it?

I find it quite interesting that a person can believe in a GOD, who cannot and has not (in our time as they would say) be seen visually (until death) and trust the very words of his teachings so much that the information becomes their life, their meaning for any and everything, yet they can look at a person in pain and because they cannot see their pain (just as they cannot see their God), they discard (but not their God) it as not real (but their God is), they're contradicting themselves. I find those who do not believe in our condition to be weak and unfortunately their faith stained with contradictions. I doubt they could walk a full 24 hours in our shoes without breaking down crying for meds or curling up in a corner forgetting to live.

Unfortunately we are stuck with the invisible condition. Unlike MS which causes physical symptoms or Lupus, AIDS (to an extent), Cancer, broken limbs, etc. FMS effects the person who has it and them only on an internal physical level with no definite external physical disabilities. It is hard to understand. However, just as I can understand the point of believing in an entity one cannot see but not believe in it but understand & respect it, I can understand ppl not believing in FMS but not because they cannot see it but because they cannot understand it.

The only thing FMS is not, is terminal and that's mind blowing to have one person suffer so many different symptoms and look perfectly fine on the outside and continue to live. Basically. . .I understand them not understanding but I still think they are weak, mindless individuals.

8

OMG I hate when ppl try to compare their pain as if we are in a contest!!! It's like they have no idea. . .no damned idea!! ugh so irritating.

9

I have learned who the real friends are and the associates are, including family. In my yrs with this pain crap I see those who can deal with it and those who can't and that's just how life goes. I am glad to have witnessed the weakness of those who refuse to be by the side of a friend/family member in need. I say good riddance. . .old friends leaving makes room for new friend entering. : )

10

Amen Mo, very well said

11

I think Mo nailed it when she said that the others are tired and hurt too and they still go to work and keep up.

12

I went to work everyday and everyday I did my job with tears rolling down my face it is not worth it. I weighed 103 lbs before I got sick and now I weigh hmm alot more and everyone does say "You look great you must be better", when really I am doing worse. I think any of us can put on some make-up and do our hair and we will look just fine. Shoot a little blush helps me plenty.

13

It is so frustrating when people don’t believe you. I have pretty much been in bed this week because I did yard work this weekend. My husband helped a tiny amount and then said his shoulder hurt and he couldn’t do it anymore. He is such an ass! I could barely walk and I kept going cuz I wanted it done. I think it is sooooooooooooo true that women are stronger than men.

14

Maybe we DO look well. My own mother said I looked better than I ever have when she saw me. Which may be true. I do not look ill, except when I'm dragging around from the pain. Or hanging sideways from my cane.

I guess it's because it's a silent illness. We don't get sores or deformed joints or anything like that to show our illness. But truthfully, people who are so callous as what you describe, SK, probably would still have a non-supportive message to those who look ill too.

I'm lucky in that people believe me when I tell them. But maybe it's because I live in an area with tons of universities, hospitals, and education, so the average person may be better educated. Just a possibility...

15

Oh, SK, right you are! A forum like this literally may save lives, and sanity, and frustration...all it takes is some freaking validation for most of us to feel better about how we're treated. Being alone with your fears and your pain is unbearable. At least when we come here we're not alone with dealing with our issues. We get sympathy and support. And we end up living better lives as a result.

16

Could be Pet. I also think that people get NUMB to a lot of it. The world is so burdened with their own troubles, they cannot cope with anyone elses! They watch a TV show that is 30-60 minutes long, and those people get better, or get diagnosed, the real world is a different arena.

17

Wendy-Anne, welcome to our group! It's a nice place to come and share your experiences with others and to hear about theirs. It really helps to hear other people talk about what they're going thru and how they handle it.

Depression is very common with our illness, Wendy-Anne. It's the pain. It never lets go of us. We cope pretty well, considering how much pain we're in. You might want to talk to your doctor about the depression as well, as he/she can probably help treat the depression. I find that my anti-depressant really works on that front.

18

I wonder the same thing

19

You come up with some amazing stuff, Mo. Your deep thoughts are appreciated and I enjoy reading them.

20

Scary thought, ariestlt, but you make a good point. I'm sure many do suffer in silence...and give up. I hope the silent readers here don't do that...or the non-silent ones, either. Stay here. Stay connected. Don't give up. Live for the good days. At least we're given the good ones.