Okay, Obviously I've had a lot going on-F'ed up Jpouch, lupus, et al. Everyone close to me in my life knows this. I haven't been able to work since I got fired for missing too much work while I was sick. True, I spend a lot of my day in bed or on the couch. I do as much housework, errand running as I can without making myself exhausted. I mostly get amazing support, but sometimes people in my life ask me questions, seeming like they are trying to understand, but it comes down to them basically questioning whether I am depressed or lazy. Neither of which go over well with me. Hell yes, I've been depressed, wouldn't you have been if you'd been through what I have? I didn't graduate with my college class because I had to take two medical leaves, but I graduated!!! I haven't been able to keep a job despite being smart as a whip and a crazy hard worker because I always end up getting sick, my boss finds out about my chronic disease, and I get fired. Wonder how it feels to be a perfectionist who was on track with the rest of her friends who are ALL doctors or lawyers and she's an unemployed housewife? I'm not actually depressed now, just because I know my body, I have accepted this and am dealing with it, doesn't mean I am lazy. It makes me furious because I would SO love to work again, to be "normal" but right now I'm not. Hopefully lupus was drug-induced and will go away, but compound that with my jpouch problems and that's a lot going on. It just really upsets me when people I love and that supposedly know me well ask me things like, "Don't you get bored?" My response, "No, because when I feel like doing things, I do them." Or, "Do you think maybe you are just tired because you don't do much?" Um, no because when I feel well, I do as MUCH as I can. I just get a lot of "advice" and questions from someone who has no way to understand b/c they've been healthy their whole life. And when I try to explain "good days and bad" I get, "well you know that healthy people have those too" and I say, "Yes, I am aware because I do remember what that feels like from before this all happened." PLUS with lupus you can at least see my swollen joints and how it looks like I have a 6th toe on my foot b/c one of my joints is so swollen. I just don't know how to respond to this without strangling someone.

My friend told me a excellent response. When someone says something insensitive, count to ten, and then calmly and quietly say, "did you really just say that?" Puts it all right back on the person and s/he has to actually think about what s/he said.

When people give me advice, I change the subject. When they ask how I'm doing, I say, "fine." Some of my friends are getting a little more assertive with their queries and question me about "fine."

It sounds like you're doing well. At least you're envisioning strangling someone. I always take that as a good sign. Means you've still got gumption rambling around in you.

kathy

Liz -- right with you. I LOVE the "more of the same" crowd. Listen, people, if you get sick of hearing about "more of the same" (and I only tell people when they really ask!), just imagine what it's like to live with it!

Kathy -- brilliant response. I'm going to totally start using that.

Gin

Once again...100% agree with Kathy (which I do so often)
I'm a "fine" person also. I'm always "oh fine" It seems so much easier then trying to explain this. Good luck...

"Perhaps, but you don't look ignorant."

My thing that makes me most upset is, well it could be worse. NO **** everything could be worse that does not mean we like what is happening to us any better! I understand where you are comming from all the oh just do this and that and it will solve your problems. Like you never tried anything to fix whats happening. It is frustrating they do not understand. And never will so instead of trying to justify yourself or defend your actions just know in your heart YOU DID NOTHING TO DESERVE ANYTHING THAT HAS HAPPENED TO YOU nor did you cause it. Next time someone starts saying stupid comments I think changing the subject is good idea you will never change their perspective and it will drive you crazy.

Lizz,

I know how you feel about everything you are talking about especially about work and having a job. I used have full time job as an Art Director. When I started to feel sick years ago I started to work as a part-time freelancer. Now I work from home but I do get out a few hours a week to do Music Therapy for adults and kids with special needs. I feel good to go out during the week but it looks like you don't feel well enough to do that.

Why don't you tell people you are working from home? Lots of people work from home now....it's easy to fool people. I do it all the time. When people ask me what I am doing sometimes I make up fake clients and projects if I have not done a real project in a while. No one has a clue. It's pretty funny really.

Remember though as an artist and musician our whole life is about not paying attention what people think about us or our work. I have that mindset. It might be harder for you but you should give it a try.

KangaRoe

Kanga,

Thanks for your response and I totally agree. I've always been very arty and am actually working on some writing right now-possible good opportunity came along. This is great!! because I really can work from home-even today, when I didn't feel like getting out of bed, I could type on my netbook and get quite a bit accomplished.
I also love your comment about being an artist and not paying attention to what people think, etc. I used to be completely type A and I did a lot of work on myself to try to change my mindset and de-stress, so I live my life with that mantra, but sometimes fear that I've gone too far and just got ambivalent. I used to be super driven and it's really easy for me to slide back into that "obsessive success" mold when I get a project. I think that's why I always got sick from stress when I worked in law offices, etc. which are high stress environments anyway.
I think a lot of my friends and family know what I'm made of and just worry that I'm depressed now. I have to say that even though that initial conversation really upset me, it did make me realize that I would probably be happier (and healthier) if I didn't just give up and made an attempt to actually do some work from home stuff, so I'm in the process of working on that.
It's just difficult to find a happy medium. I've never had a flexible job, so I guess I thought they didn't exist, but I can create one myself or do the freelance writing or work-from-home options, so I am just exploring those more now. I guess it was always hard for me to accept that I couldn't do something, so I would just try to "get better" and go back to a "normal" job, but now I realize I just need a little something that is very flexible.
Thanks again for your comments, all. Love this board!

Hi Lizz,

I've been having this same issue, and it's cropped up again this week. It's so very frustrating especially when it comes from people you think know better. My standard response is, "Looks can be very deceiving."

Also, not sure if you've been on this website but it's good for all us chronic sickies. Butyoudontlooksick.com. Check out the spoon theory, it's the perfect way to describe our daily life.

Allison

P.S. I'm not personally involved with the bydls website, I'm not paid to endorse it or anything, it's just brought some much needed clarity and humor to my life.

You don't look stupid but....is my usual answer...some people still don't get it after that at which point I realise that I am not the one with the problem!
Life is way too short for me to worry about dummies, idiots and mentally deficient people with the sensitivity of an empty oyster...I usually get my revenge the day that they have to have their first colonoscopy...
Sharon

I am somewhat new to the board and have not had surgery yet (next month), but I have been struggling with this decision for many months now (jpouch surgery) and now I need a uterine biopsy before surgery to rule out any uterine cancer.

I have been suffering with UC for over 20 years with repeated relapses at least once a year or more and constant drugs and repeat rounds of prednisone. I have had to give up my career and like many on this board, the disease has had a serious impact on my life and emotional well being. I have two children and a supportive husband, but I know at times he too is so tired of my constant illness.

I just want to add that no one I know seems to understand my situation and I too have gotten to the point of saying 'fine' when someone asks how I am. I have come to the belief that they really do not care and ask out of politeness or something.

I have become socially isolated as I have a hard time mustering up to be around 'normal' healthy people. I often find myself crying at the drop of a hat. Truthfully, I have never felt so depressed in my life. I worry that this surgery will change my life even more (and most likely not for the better). The only reason I am doing it is because I am at a risk for cancer now.

I am happy to have found this board and the wonderful, compassionate individuals on it and to have others who really understand the pain many of us deal with daily.

Hi Kjeane,
Hang in there, you are not alone...there are hundreds of us here to help...it is hard to loose 'yourself' to this disease and loose everything that you had worked so hard to become only to be reduced to a diagnosis and a disease that no one outside of this board seems to comprehend or care about...we have all lived through it (for the lucky ones) and still live with it (for the less lucky ones)...your J pouch will help, a lot if all goes well and maybe not perfectly if all doesn't go well but it is still better than the disease plus cancer...I have reaced the 'sc--w them' stage in my life (I usually use 50 as my excuse out loud) where I do not put up with any BS any more from anyone...some people ask me 'why have you changed so much, become so hard' and all I can say is that I had to...How long must you scream in pain before they listen? I used to turn the pain, fear and depression inwards...not a good thing...so now I exterieurize it all...(look out folks here I come!)...when I am feeling aggressed, insulted, disrespected , un pain or just plain ignored I let them know...I am tire of always saying 'fine'...I am not fine. I am sick. I am surgically broken. I am in pain. I can no longer do everything I did for you before. I hurt.
The ususal answer from people is, 'I didn't know! Why didn't you say something (before)? Really?
You are not helping yourself if you hide the pain. You are helping them. So decide 'who you love more' (sorry that is unfair) yourself of them? If you get the love and support that you need from them first then you will have the force to love them back and make the right decisions...
So sorry for the sermon but I believe that you all deserve the love, we all do.
Sharon