[jshelton999]

Through years of chronic illness I have encountered countless times when well-intentioned friends have tried to help by implying that my issues with chronic fatigue were more a matter of character than an actual medical condition. I've come to accept that when you have an "invisible illness" people are often inclined to assume it's all in your head and that all you need is more motivation and a better attitude - especially if you haven't received a diagnosis that 'justifies' your apparent lack of ambition. They think you're obsessed with illness but the truth is you are simply 'obsessed' with getting well...

Today, I came up with a simple response that I thought you might like...

"Tough love is not an effective treatment for chronic illness."

[mushroom]

I can relate to your post. I have bugged off a lot of things I used to be involved in for the last year because I did not have the energy/interest/motivation for these duties. I was too busy trying to get well. Now that I am venturing back into some of these activities everyone is telling me how well I am looking now, so I must have been looking like hell last year, and yet they were all implying that I was somehow shirking. It makes me a bit mad.

[Gwynn]

"Tough love is not an effective treatment for chronic illness."



That simple sentence speaks volumes. I have been having a list of problems over the years. When I got really, really sick this past February and March, I knew that people were thinking I was not really all that sick. That I should just "suck it up" and go to work, go to dinner, go to athletic events - even though I knew I was SICK. No one really called me out on it, but sometimes you just know.

Since my diagnosis of celiac disease on April 7, 2009, sometimes I childishly want to go up to certain people and say, "I TOLD YOU SO!"

I wasn't faking anything, but yet sometimes questioned my own sanity because, after all, if all the doctors said nothing was wrong with me then maybe I really was a hypochondriac. My diagnosis has made me more aware of my own inclination to be judgmental of others with an "invisible" illness and to treat them with more empathy and kindness.

I would like to put your quote on my blog page, giving you the credit of course, if I may have your permission.

Gwynn

[Salax]

This is a very powerfull statement that speaks volumes without saying more than a sentence. I also too have family member that need to hear these words. I hope you don't mind, I am also going to use them. I think many of us will.

[PattyBoots]

Good, but I prefer brevity - my response is always "Go to hell."

I find it to be an extreme lack of respect to me when people try to tell me how I feel or poo-poo my feelings. Regardless of whether you think it's all in my head or that I shouldn't feel the way I'm telling you I feel, the fact of the matter is that I feel what I feel, and if there was a way to let someone else walk in my shoes for a day I would love it.

[jshelton999]

Thanks guys for your replies. I knew you would relate bigtime!

I haven't been diagnosed celiac yet - still waiting for biopsy results but I'm certain I have it. I have been hypothyroid since 1989 and was hypopituitary 2001-2008 when it reversed itself in response to withdrawal from Cortef (hydrocortisone).

BTW - I like to use "Go to Hell" when diplomacy fails!

[jshelton999]

Gwynn, on May 14 2009, 07:49 AM, said:

"Tough love is not an effective treatment for chronic illness."



That simple sentence speaks volumes. I have been having a list of problems over the years. When I got really, really sick this past February and March, I knew that people were thinking I was not really all that sick. That I should just "suck it up" and go to work, go to dinner, go to athletic events - even though I knew I was SICK. No one really called me out on it, but sometimes you just know.

Since my diagnosis of celiac disease on April 7, 2009, sometimes I childishly want to go up to certain people and say, "I TOLD YOU SO!"

I wasn't faking anything, but yet sometimes questioned my own sanity because, after all, if all the doctors said nothing was wrong with me then maybe I really was a hypochondriac. My diagnosis has made me more aware of my own inclination to be judgmental of others with an "invisible" illness and to treat them with more empathy and kindness.

I would like to put your quote on my blog page, giving you the credit of course, if I may have your permission.

Gwynn

Thanks Gwynn - Please feel free to use it.

[jshelton999]

Salax, on May 14 2009, 11:50 AM, said:

This is a very powerfull statement that speaks volumes without saying more than a sentence. I also too have family member that need to hear these words. I hope you don't mind, I am also going to use them. I think many of us will.

Thanks Salax - Please feel free to quote me! I'm honored!

[lizard00]

I had someone (very well intentioned) tell me that I was just bored.

Right... I have a 4 year old and run a small business, how do I have time to be bored? I don't have time to do half of what I want to. People just don't get it.

[Dasmith]

Wow....I just logged on because I was needing to vent re: mother-in-law and how "Celiac disease" is all in my head (I was diagnosed on January 9th, 09). I think I may have to say "go to hell"......

I have NEVER asked any of my friends, family, etc to make concessions for my disease. If you want to eat somewhere that I can't...go the heck ahead...I will eat before, or not go...

If a family meal is planned and you don't give a crap as to what I can or cannot eat....again, make what ever you want.....I will bring my own...

Anyway this just made it all better.

[Ms. Skinny Chic]

Gwynn, on May 14 2009, 10:49 AM, said:

"Tough love is not an effective treatment for chronic illness."



That simple sentence speaks volumes. I have been having a list of problems over the years. When I got really, really sick this past February and March, I knew that people were thinking I was not really all that sick. That I should just "suck it up" and go to work, go to dinner, go to athletic events - even though I knew I was SICK. No one really called me out on it, but sometimes you just know.

Since my diagnosis of celiac disease on April 7, 2009, sometimes I childishly want to go up to certain people and say, "I TOLD YOU SO!"

I wasn't faking anything, but yet sometimes questioned my own sanity because, after all, if all the doctors said nothing was wrong with me then maybe I really was a hypochondriac. My diagnosis has made me more aware of my own inclination to be judgmental of others with an "invisible" illness and to treat them with more empathy and kindness.

I would like to put your quote on my blog page, giving you the credit of course, if I may have your permission.

Gwynn

no one ever believes you are sick....even, if you look sick...
I don't care anymore what people think.... they can all go to hell.
no one has the right to judge anyone off their sickness...

[hannahp57]

When i as my sickest i was 16. i started dropping pounds at a time and my stomach constantly hurting. i would have my hand pressed up against my abdomen just because some warm pressure relieved it for a moment. so here i am this 5'8" tall girl who barely weighs 100 pounds and simply is in too much pain to swallow anything more solid than water.. i got diagnosed two weeks before school....
and the rumors start. "hannah is anorexic" "spent the whole sumer pretending to be sick so she could lose weight" blah blah blah.
and i'll admit i was embarassed, as silly as that seems now. but i was so happy i could actually EAT. i decided i didnt care. if high school girls are really that petty, thats fine. i just enjoyed those times the girls were brave enough to ask what my problem was...
half of them thought white bread wasnt made with wheat flour! hehehehe

[RESO]

Hello all,
Thanks for this thread, it's a good one. I started having serious symptoms early last year (extreme fatigue, bloating, constipation, painful indigestion, vertigo, nosebleeds, sinusitis, etc.) and last September my acupuncturist suggested trying wheat free for a month to see if it helped. Within a few days my sinuses were a lot better and I wasn't having the indigestion nearly as often. I then realized that rye was affecting me as well, so I removed that from my diet too. My symptoms have slowly cleared up,. the fatigue has only gotten tons better over the last 2 or 3 weeks. After a couple of months on the gluten-free diet, I found this board and it's been an incredible resource.

People have said things to me like "oh, you can have a little bit," and "you're just doing this to lose weight", etc. Luckily, I have never cared what other people think. At my last doctor's visit in March 09, the doctor asked me to describe my symptoms and when I did, she asked if I had been tested for celiac disease. I told her I would consider it when they come up with a test that doesn't involve ingesting gluten and making myself sick for 3 months. But at least she asked, right??

I guess my point is that having this forum is invaluable for resources and support. Thanks to everyone!

[Mskedi]

"Tough love is not an effective treatment for chronic illness."

Well put.

[Emily888]

Thank you all for this thread; I just got back from my mother-in-laws for a labor day BBQ.

I often feel uneasy when I go there, I feel as if they do not believe that this is a real disease, I try to explain that my body actually starts to attack itself hence but it never works. They don't actually say it straight out to me but I don't feel that they are on my side either.

My mother in law likes to bring up a study that she heard about that says that people can get over there allergies by eating the food that causes allergies in small doses everyday. I want to shake her and tell that she is crazy but I reminder her that it is so much more than a mere allergy.

Today when I walked in she had 2 loaves of homemade lemon pound cake and several homemade muffins sitting out on the island of her tiny kitchen with a fan blowing right on them toward the door. I got so spooked that I held my breath walking through the kitchen and stayed out of there the entire time.

My Aunt-in-law got testy when I asked her how the baked potatoes were made and what spice was used on them.

I don't mind that I choose not to eat so many foods, I just wish other people wouldn't get edgy with me about not eating foods with gluten. It doesn't bother me but for some reason it bothers them.

Sorry this post is so long, thank you for letting me vent.

Emily