Debbie Downer & Heidi Hypochondriac?

[Eff fibro]

I can completely understand where you all are coming from! And Forgetmenot, your post was awesome, thank you! I feel like friends/family think I'm complaining or being negative nancy when all I want is for someone to know I'm not feeling great. I don't want a response from anyone, there's nothing they can say that would make either of us feel better anyway. Just knowing that someone knows makes me feel less alone. But when I talk about it I feel like a loony tune, trying to describe these weird nonsense sensations, and I feel like people MUST think it's all in my head. So I'm at the point where I don't say anything unless they ask, but I'm finding it depressing and lonely. I think venting here may be just what I need!
I'm also lucky that my PCP listens without judgement, had a neurologist who treated me like a hypochondriac, then a rheumatologist who was fantastic... but bringing up a laundry list of symptoms to any doctor is an intimidating task, trying to cover every one of a thousand symptoms I've had, and feeling like people must just think I'm a hypochondriac.
I wish all the "normal" people knew I'm not just conveniently finding an excuse to be lazy. It's not rewarding feeling debilitated by pain and fatigue. I said to my boyfriend earlier, when I found this site, that although he *believes* I feel what I say I do, talking to people who KNOW is different. The more fibro is studied and understood the more we will be taken seriously when we do talk about our symptoms. But for the general public, it may be a while coming before people accept that someone can feel something like this that tests cant prove or that they cant see. I'm finding peace here, feeling MUCH less alone now, thank you all for your posts!

 

[cmdesjardins]

Yes! A lot of the time I feel like all I do is complain. I feel like people get annoyed with me and my talking about my pain. But the pain has just gotten so bad I can't help it.

 

[Ma(x)2]

Does anyone else feel like Debbie Downer when they talk about their symptoms to people who aren't affected by fibro/other chronic illnesses?

Even when I talk to my doctor about how I am feeling, I worry that I am just coming across like some big whiner, or a big hypochondriac just looking for drugs. He doesn't treat me that way (thank goodness) but I can't help but shake the feeling. And goodness...when I talk about the symptoms I have during a flare to my "normal" friends, I just feel like I'm being such a downer (though that's not at all my intention.)

Am I just nuts, or do y'all feel this way, too?

Most definitely flightybird, the Debbie Downer, not the nuts part:wink:

 

[PythonPlay3]

Yep, I get those "looks" too. I actually had my best friend tell me she thinks I cause my own "stress cycle". I mean I must be doing something to cause me to feel this way. I agree 100% with everyone here, unless you have it, you really don't get how much the body can hurt with NO injury site. I think that is what people fight with, there is no injury-no muscle tear-no joint problems- etc- so why would there be pain. You can't let them get to you. Just brush them off. I have had some really good periods of a couple of weeks, and yes, I think to myself, it is easy to forget I have an illness. But then it comes around and hits again. The drastic pull of feeling good to feeling bad for me in insane! I can be in so much pain for days, then walk up one morning and it is gone. That sort of on-off doesn't help me case either. LOL

 

[Brismom]

Flightybird: Heck yeah! You nailed it. I felt like I kind of downplayed everything for years to my doctor because I felt like such a hypochondriac and a complainer! So now that I am actually diagnosed with Lupus through labs and symptoms, I kind of feel vindicated! It's the real fakers, druggies, and lazy people who make things tough on us real sick people! Now I have to physically go to my doctors office every month to get a refill on my pain medicine because so many druggies, scammers, and slackers made things even more difficult for those of us who really are sick! AND why does it take so stinkin long to diagnose these conditions!? They say we have the best medical system in the world?! Ha. I had resources to demand I see a rheumy, a pain specialist, and a neurologist and I actually had the energy (barely) to get it done. How many poor women out there don't have a car, or family, or even the strength to fight for her diagnosis and/or her pain and getting a doctor to listen to her?! I sure wish there was something I could do to help these women. God bless who ever runs this website for doing your share to help (which is huge!)

 

[terbaer]

For sure I feel that way! You are nuts. What is also difficult for me is believing MYSELF at times. When I am having a good week or *gasp* a good month, I start second guessing my decision to apply for SSI. Until the next flare comes and I realize that this is real.

OMG! I do the same thing! I had been struggling for the past few years to work full-time and had to reduce my hours last December. I stopped working in July and have had a rough time of it, which has made me very thankful that I'm not working. I have had very little good days/weeks in the past year, but every time, I so quickly forget and start second-guessing my decision. And, yep, the next flare that is around the corner hits and I tell myself to quit doing that!

For the most part, I have made huge strides in accepting this disease, as has my husband. My son, not so much. He has still barely talked to me since the first part of the year. He called me several names for even thinking about disability. I have still been unable to get him to accept that I can't function a majority of the time. In his eyes, I'm a piece of crap for applying. I'm lazy. I'm perfectly capable of working, but I am crazy. My heart has so broken over this and I know it has added to the stress and anxiety I already go through. Sorry, that threw me on a totally different, but painful bunny trail....I love my son so much and we used to be close. I'm not sure he and I will ever have a relationship again. I certainly never taught him to be so judgmental. I have worked for and paid into social security for over 32 years. I'm too young to retire. It's there for a reason....

 

[Brismom]

Terbaer~ I am so sorry but I know exactly how you feel! I come from a serious work ethic family and so me going on disability just got serious back bites, snears, and growls from the entire family! And mostly the reason is with fibro we look so normal! So can you believe I am actually happy to be diagnosed with Lupus because at least there is a blood test to confirm it! Now that is just sick sick sick. Something has to change with this system and the American way of thinking. Can you sit your son down and talk to him? I wish he could feel your pain for 5 minutes! My girls really didn't understand when I first filed and had to quit working. They cried screamed, and I felt so bad because I have prided myself on always being a hard worker. Ive been an RN for over 20 years and I was in the military, I have done so much in my life but I still look good and look strong so they just thought I was quitting. Plus when doctors are so hesitant to give a diagnosis (mine would not for years), I think they thought I just wanted pain pills because we do have a lot of people like that in Ca. But anyway, my major point since I have rambled so much is that, you need to do what you need to do for yourself and your health and your son will come around....he will. I will pray for you because its very sad when your kids don't believe you because sometimes you do have okay days when you can do stuff, but you just cannot handle the 9/5 grind any more! I got an Ebay business so that I can work when I am feeling like working from my house and when I don't feel good I don't have to (not much $ tho). I am divorced and single so barely make ends meet~but that's what I had to do. Whatever you have to do to rearrange your life for your health. Good Luck!

 

[terbaer]

Thank you Brismom....I sure hope you are right about my son! I have tried to talk to him, but he won't see me with just the two of us. The last time he contacted me is when he left me the message with the information I posted last night. I decided it was clear he didn't respect me so my way of gaining a little of my self-respect was to completely stop any communication and say "He's on his own." Hopefully being away from me will make a difference, but I'm not as optimistic.

I completely understand your want to have something specific diagnosed. I just had my second colonoscopy. I was diagnosed with a rare form of colitis on top of my fibro and chronic fatigue two years ago. I haven't been able to get control over it over the past 9 months so my gastro doc thought it was likely irritable bowel. He tried treating me for that, but no change. I have days when I really can't do much of anything because of it. The doc decided to do another check to see if I have crohn's. I was almost hoping it would be that because then I'd know, but it came back no. I know, sick, sick, sick, LOL! I have my follow-up next week to see what the final results were.

I admire your strength and character making ends meet on your own. Big, gentle hug from me!