Feeling down and stuck

Discussion in 'Fibromyalgia Main Forum' started by zenouchy, May 29, 2008.

  1. zenouchy

    zenouchy Member

    Thank you all for reading this. *I'm sorry this is long. I posted this on the depression board too, where I don't usually post. I have a talent for rambling when I'm down. I try to have perspective and let things roll off, but it's not working right now. I feel like my social interactions with people are just repeating themselves. It's like I could have a tape recorder and hit the play button.

    As you all know, it's tough having a chronic illness, and our life experiences are different than many people's. Like many of you, I have been trying to cope with a lot of disappointing situations that life has thrown my way, namely not having kids and not being able to work in a long time. I have done years of internal soul-searching and have had lengthy discussions with doctors in order to determine that it would be too risky to have a baby. That's obviously very disappointing, but I have tried very hard to accept it. I always thought I would have kids because I really love them! What's worse though are people who grill me as to why I don't have children and even think I'm selfish for not having them. Wow, people never cease to amaze me.

    Alrighty, so, if I don't have kids, than certainly I must work, right? Well, no, I don't work either. I have fibromyalgia, so, working is difficult too because like many of us, my health changes on a dime. One day (or part of the day), I can have a good deal of energy, and the next day, I can feel hit with a ton of bricks, and the worst part of it, is that it's unpredictable. I can feel fine one minute and then horrible the next, and I never know. The ambiguity of our illness makes things even more complicated. Employers need reliable employees. That's completely understandable. It's a rare employee who can work with this.

    Anyway, I'm TRYING to be ok with this. I REALLY want to work because I'm bored sometimes. It's hard enough to accept these things myself, but I try. If you see my profile, I was just starting to work "part-part" time at a start-up company with some friends, but it didn't pan out for a variety of reasons, which was of course frustrating. What makes matters worse is that people I meet, potential new friends, friends I already have---they all want to put me in society's little box because it would just be unheard of if someone thinks "outside the box". If I don't have kids, I have to be working: Am I working? If I haven't worked in awhile, am I now?

    So, on cue, I can be a secret agent and give people the quick, snappy answer they are looking for that they expect someone like me who is in their upper 30s that doesn't have kids: "I have health issues, but I work part time at a start up company with friends" or "as a substitute teacher". If they probe for info, I can easily give them more details. I'm good at thinking on the fly, and the follow-up questions are always similar.

    People are always pretty predictable, and I can always think of a few funny anecdotes for whichever of the two jobs I feel like "being" that day. I mean how ridiculous is that? I hate lying and it's so unauthentic!! It's almost funny if you think about the fact I can lie so easily, but it's really just SO SAD! I would rather DO THE JOB and not pretend I have it!

    If I say I'm not working b/c of health reasons, people feel sad for me or think I'm not trying hard enough. I get comments like "You're smart, Erika. You'll figure it out." As if this is an intelligence issue. GRRRR! I also look like the picture of good health because I'm trying so hard to feel good. I exercise every day because for me it relieves pain. That also helps keep my weight stabilized, and my skin also glows from eating so healthy. On the outside I look pretty good. For me to be unhealthy just doesn't add up.

    I can understand the confusion for people, but it just puts me in this terrible predicament and stirs up the reminders of not being able to work or have kids. Further, if I can show up to their social event (I always end up sleeping a lot the next day), it's even more confusing for them. I'm usually upbeat, humorous, and extraverted around people, so I don't seem sick in any way.

    I've tried many approaches with people from not mentioning health stuff to mentioning it briefly, to giving more details etc. People always say don't make it the focus, but when I don't fit in societal norms, people get very curious and just want to know the deal. I'm tired of the heartache, tired of people thinking I don't try hard enough, etc. I have "friends" and now former friends that have lupus who work and have kids.

    I feel like the loser with the chronic illness that can't do either. I know we're all different, but it's so aggravating, and some other people in the circle of friends (some people are nice, so I will have to endure the ex-friends) totally invalidate my illness while saying that the other two are amazing in how they handle the lupus!! EEEKs. One "friend" with lupus just dropped me after I got dxed with fibro and we used to be really close.

    The reason I'm able to even leave the house is because I've jumped through more ridiculous hoops that most people would ever even imagine. And they have the nerve to think I don't try hard ENOUGH because I look good. And it's often because they could just never fathom these things. I would probably be doing the same thing to someone else with fibro unknowingly if I were healthy and they weren't. And this will just keep playing itself out over and over and over. How can I make this stop?

    Thank you all very much for listening.


  2. DoveL

    DoveL Member

    Hello there Erika :)

    WOW, I could have wrote your post!! I am 39, soon to be 40! I used to be VERY active, and worked ALOT of hours before being ill. I have, No kids, was recently working part-time, until the pain got so bad (I have CFS, and FMS)

    WOW, I can relate to the 'why don't you have kids' question! Quite rude!!! I was at a party a few weeks ago, when a 'NERVY' women said to me 'why don't you have kids, don't you WANT to HAVE KIDS? I responded, well, first of all I don't have a husband(have a boyfriend over 5 years), and second of all 'I can't HAVE kids (did not get into the whole chronic illness thing, because basically I can't have kids, because I can hardly take care of myself). Well, needless to say about 10 minutes later, she came up to me apologizing for being so rude and ignorant, and started to cry! Not to be mean, but I had no sympathy for her rudeness!

    Then there is the 'what do you do for a living' question! YIKES! I know how you feel! I was working part-time; so now I just tell people that I was unfortunately recently laid off, then change the subject!

    If it makes you feel any better, you are not alone in your situation. I am at the point where, If people don't like me for 'me', then they are not worth it. I can't explain my whole story to everyone(why I don't work ect ect) and even if I did they probably would not get it! It used to bother me alot more explaining my situation, but now; If people do not like me for my company and friendship, and if that is not enough, then they can take a hike! :)

    Good health to ya!


  3. findmind

    findmind New Member

    I say, "just lie"....sorry, but I find that people who like you do so no matter what, and they will either gravitate towards you or not...it's their loss!

    I lie to people until I feel they are sincere in their feelings toward me; then, little by little, I trust them with the truth. If they support who I truly am, then they are my friends.

    Conversely, you could be rude in return, and just say "Why do you ask?" when they ask you about kids and your own personal choices or non-choices.
    Anyone worth knowing will get the message and take it as o.k. for now; later, if they are accepting of you, you can tell them what you want them to know.

    I know, it's really hard having to be yourself and accept yourself as a chronically sick person, as well as put up with the ignorance of others. I really think a "chronically ill" SG would be a good place to meet people who would understand you and accept you just the way you are.

    We do....

  4. spacee

    spacee Member

    That truly was well written. You hit all the painful points perfectly.

    I am asked what I do. I say that I post on a medical board on the Internet. Boy, that shuts them up.

    I have had to go to numerous dinners with my husband over the years. And I find that people are notoriously self absorbed. So, a couple of weeks ago...I asked the couple to my right if they had plans for the summer...and they responded. The the couple to my left was seated and I told them what plans the other couple had and asked what were their plans. Seemingly gladly they responded. And so forth and so on I orchestrated the entire conversation at the dinner. Did anyone ever inquire anything about me...nope.Just as well...nothing to report but it does underscore our "out of step" with the "normals".

    I am truly sorry that you could not have kids because of the DD. I had three sons. May I tell you that most sons tell nothing of their lives when they get home. The school would have had to burn down before they would noticed. They grow up and leave the state and you hear from them when they need something. I am sure that some are different but my counselor tells me most are like mine. But I know that still I have it to report that I had some. It is just a different sort of pain...that they don't need you either.

    The not being dependable is IT. My identical twin always told me that I could work...until this year for the first time she spent two weeks with me. How nice to be told for years that "you could work". Do I not have a mind that tells me what I can do and can't do????

    Well, now I need more quarters for medicare part B. So my hubby and I have figured out that I am awake between the hours of 1pm and 3 pm. And that I can come down and be his "assistant" on the days I feel like it. This is going to involve numbers cause he is a CPA and I can do numbers...just not accurately. But I will give it a try...like you with your friends business.

    Wanted to let you know that your thread means a lot to me. To put so eloquently our pain...different but alike in alot of ways.


  5. zenouchy

    zenouchy Member

    Thank you all so much for taking the time to write such thoughtful responses to me! Your experiences make me feel less alone in the unusual situations that arise from our annoying illness. It was really kind of you all to respond, and I admire you all for how you cope with the difficulties of our illness.

    DoveL, it sounds like we have a lot in common---wow. I live in a high-tech town where many people are workaholics. If I told people I was laid off, the response would be, "so, where are you applying for more work?" They just need to get a grip! I love how you told off the nervy woman who pried into your business about not wanting kids! People are so rude sometimes.

    findmind, thanks for your kind words and support. I like the support group idea, and I even tried starting one! For several reasons, it didn't work out. A lot of people couldn't come on a regular basis b/c they were too sick to come. Our illness is so confusing that I find that even very close friends are baffled and say the wrong things too. I get so drained by it all. I'm sure if the situation were reversed, I might accidentally say the wrong thing also. Who can possibly keep up with the intricacies, subtleties and ever-changing symptoms of fibro? The people you meet for the first time, it's always a gamble. The whole thing is just one big drain and mental gymnastics trying to "feel out" the other person. I guess this has just all hit me.

    bdtmu516, I feel like you as well re: working. Besides our city being full of workaholics which makes me feel even more like I don't fit in, I actually LIKE working and making a contribution!! I am an independent person and always have been. I like making my own money. Plus, we could use the extra income, especially as the economy is going downhill! The side comments from people makes it all the more maddening when it's something you really want to do so badly. I am so with you on that. As if we need to be "reminded" to work. As if we're just evading it or aren't motivated. We just have to keep having hope that we can at some point. It's hard for me sometimes to keep that hope when it's been a long time, but losing hope is not a good option either. We just need to try to hang in there!

    Spacee, thank you for saying that my post was eloquently written; I was writing it during a huge crying spell! I am touched that you are touched. Thank you very much. I'm sorry that your sons only call you when they want something too. Hopefully that will change as they get older.

    That's awesome how you orchestrated the conversation at the dinner party! That's just too good. I did that once also at a dinner party my husband and were at, and it worked like a charm. A man asked me and another woman where we worked. The other woman responded first (since I of course had nothing to say), and I acted completely fascinated and kept asking her more questions to the point that they forgot about asking what I did. And then we moved on to something else. Kind of funny.

    I will have to learn more coping mechanisms for dealing with social situations. It just feels like social gymnastics sometimes. A lot of quick thinking. I'm fairly good at that anyway, but it's just not fun sometimes. It's kind of draining, but I guess a lot of people make things up or stretch the truth to appear better than they really are.

    I'm finally able to get out more and socialize. It's better than being in "sick jail", but now there's more challenges as I'm able to go out. Life is just full of challenges, isn't it?!

    Thanks again everyone. Have a happy, healthy day.

    Warm hugs,


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