[mrmachinist]

Hi, newbe here, just wondering if anyone else has been through the same hell I have and how they are coping. I just discovered I have been suffering with celiac and have been missdiagnosed by EVERY doctor I've been to for the last 10+ years.

The last three years have been rough, starting with my wife devorcing me when I began having health problems, I was missdiagnosed by a rhuematolagist and put on chemotherapy to shut down my amune system in order to treat my "arthritis", then a year and a half later lost my job due to my increasing health issues related to the undiagnosed celiac dissease.

Has anyone else had a spouse, boss or doctor treat you like you're just a lazy hypochondriac that should just suck it up and shut up?

Thanks,

D.L.

[ianm]

Been there. My wife filed for divorce becuse I was too sick to take care of her. Men aren't supposed to get sick. I almost lost my job because of it. The only thing that saved me is the company I worked for at the time was so poorly managed that I was able to squeak by. When the management situation was changed I had found out what was killing me and was able to save my job. I left for a better one shortly after. Losing the wife turned out to be the best thing that ever happened to me. It has been a long hard fight but I managed to survive and prosper.

[ravenwoodglass]

I think there are lots of us here, myself included. All we can do is try to look forward.

[jerseyangel]

I sadly had to quit a job I loved due to being ill. Even then, it was another year and a half before I was correctly diagnosed. Unfortunately, many of us have been up against the old "suck it up" and "mind over matter"

I wish you the best--I wasn't diagnosed until I was 49 and had had years of misdiagnosis and unnecessary treatments and medications. Three years post-diagnosis, I'm doing much, much better. It can take time, but there is light at the end of the tunnel.

Take care

[dilettantesteph]

Almost got divorced. Don't know how we managed to stay together. I was such a psycho. Couldn't work because I was dumping a whole load in my pants twice a week or so requiring a shower and half hour or so clean up after each time. How would you deal with that at work? Doctors said it was IBS. Not happy about that. So happy to be better. Looking for work.

[Mother of Jibril]

My husband and I are still together, but we just barely made it through

After we lost our second child when I was 17 weeks pregnant (which I'm pretty sure was caused by my autoimmune problems) I fell into a severe depression... made worse by the same autoimmune problems. I took a leave of absence from my job for three months. My husband just did NOT get it... he kept telling me to snap out of it. Like that was possible! If it wasn't for our daughter (who was not quite two years old at the time) I think I would have ended up in a psychiatric unit. I pushed myself to get better so I could take care of her.

I can definitely see why people end up divorcing or losing their jobs when they're seriously ill. Even if you want to be a good spouse (or boss), I think it takes a special person to have real empathy. A lot of people just don't want to be bothered.

[codetalker]

mrmachinist, on Nov 26 2008, 10:53 AM, said:

Has anyone else had a spouse, boss or doctor treat you like you're just a lazy hypochondriac that should just suck it up and shut up?

A couple of days ago, I mentioned in a post that one doctor once asked if I ever considered whether I might be a hypochrondriac and then suggested I seek professional counseling. Of course now that I think of it, my ex thought I needed professional counseling too. Maybe there's a pattern here.

Divorce is tough but people get over it. If it happens, it probably would have happened anyway. If you can find the elusive single celiac that shares your interests, the relationship would at least have a common foundation. There would be a lot to build on.

[darlindeb25]

Quote

Has anyone else had a spouse, boss or doctor treat you like you're just a lazy hypochondriac that should just suck it up and shut up?

The doctor I work for often makes me feel this way. A doctor, no less!

Quote

Divorce is tough but people get over it. If it happens, it probably would have happened anyway. If you can find the elusive single celiac that shares your interests, the relationship would at least have a common foundation. There would be a lot to build on.

Codetalker is correct. If a divorce happens, it's much bigger than the celiac disease. I a person really loves you, they help you get through the disease, they do not turn their back on you. It would have happened anyways. I know my being sick wasn't fun for anyone else in my family, yet my spouse was rarely around anyways. We have been divorced for 10 yrs, and I have been gluten-free for over 8. For a time, I did see a counselor, and when that person asked that my husband come in too, he said no, because it was all my problem. By the way, he didn't leave me, I asked him to go...not about celiac.

I would love to find a celiac man now, it certainly would make life easier!!!

[mrmachinist]

Thanks to everyone for your responses, it makes me feel better to know that others know what I've been going through, nothing is worse than being so sick and having those around you especial ones you love act like you are just lazy or crazy.

Has anyone had to go on dissability? I have been told that I may need to apply because of the rhuematoid condition Celiac causes me to have.

[luciddream928]

My heart goes out to you. I'm 28 and I've not been married yet, but I have wonderful support from my family and the agency that I am interning at. I feel blessed to have this support in my life and I've seen people struggle through the things that you are talking about.

Raven is right - best to look to the future and the positive. Occasionally I've gotten a jab here and there re: laziness, but in my heart I know that people always do their best to move toward wellness. Health is SO much more than surviving - it's thriving, and we don't live in a society that supports that POV. I think in some ways it's worse for those of us with the intolerance vs. the disease - people hear "disease" and they are more likely to be tolerant. Intolerance, on the other hand, evokes an image of one who is "a picky eater" or "a complainer." Not true.

Unfortunately most people who make cracks about laziness or "get over it" in my experience have been people who treat themselves or approach life with that attitude. That isn't meant as a judgment, though it probably sounds like it. I guess what I'm saying is that people project that attitude onto others when it's their experience. There is no room for empathy. When I get in that mood and I push myself, I have no room for empathy for myself, and the vicious cycle continues. What hurts is not so much that they say that, it's the fact that I internalize it and mistake it for MY point of view, which it isn't.

I've decided that in order to be well I need to scrap that attitude from my consciousness and recognize it when I see it in others. The first line of defense for me is not relying on what others say to validate how I feel. No one knows my body but me, and the experts on health and wellness are myself, my specialists, and people who support me, in that order.

Just my .02 cents, and again, my blessings to you! This is not an easy experience.

[minton]

I almost lost my first job because I was supposed to work thursdays and thursdays at school were chicken days...the breading made me sick and I'd go to the doctor every thursday for 3 years. One would think they would've caught celiac then! My next job was at a sub shop and they fired me because my mom brought me lunch (their food at minimum had modified food starch!) and my mom would often stay with me on my breaks. sounds like a nice mom to me, but they were offended that i never ate their food.

before diagnosis I had 2 boyfirends leave me over my constant sickness as well as family trouble over it. Thank god I have a name for the problem and have an understanding fiance!

[wcc84]

I feel your pain..........I went almost 16 years undiagnosed! Went to some of the best medical facility's in the country including the Mayo clinic, the Clevland clinic,the university of Miami medical center,etc. When I finally was diagnosed I was very angry for about 6 months or so. When I saw the criteria for Celiac I just about had Celiac tatooed accross my forehead. How could the best doctors in the country not see what so so obvious. It also upsets me that I have a higher risk for cancer than most Celiac patients because I went so long undiagnosed and all the while ingested gluten (I am Italian so pasta and bread were daily in my diet).

Unfortunetly with our terrible economy my business that I built from the ground up all by myself has shut down. My business was heavy in real estate investing so you can see my issue with all the problems with real estate and the mortgage industry. I now am unemployed and am forced to look for a job in industrys I have no experiance in. My backround and the industry I worked in have been torpedoed. My business always allowed me to have the freedom to work from home and take time for myself if I didnt feel well.

As far as family and spousel support I guess I have been lucky. My wife is very supportive , although sometimes its hard for her to understand the extent of my pain. My parents and siblings have always been super supportive.

Keep your chin up, things WILL get better. And take my word for it......you WILL find a women that will love you for YOU! Good, bad or indifferent. Anyone that leaves you in a time of need is not someone you want around.

[Amyleigh0007]

My husband doesn't get it and his ignorance makes me furious. He thinks it's all in my head and has told me several times to "get over it". He thinks my symptoms came on suddenly because I never complained until after our son was dx. But, what he doesn't understand is that I thought the way I was feeling was normal. I did not know what it felt like to feel well. I had never had a "normal" bowel movement. It was one extreme or the other. I thought having a headache all day was a way of life for me. I thought taking naps everyday was fine. When our son was dx in March it was like a lightbulb going off for me. After countless hours of researching Celiac for my son's sake, I discovered an answer to my own health problems. My husband thinks I am nuts, especially since my blood tests came back negative. He has not educated himself on Celiac and I always ask him what he would do if something happened to me and he had to take care of our son on his own. We have discussed divorce and I tell him that I would fight for full custody because he could not take care of our son properly. It's a sad situation that I hope will improve.

[nasalady]

With regards to my job, I made certain to sign up for FMLA (Family Medical Leave Act) benefits through the Human Resources department where I work as soon as I began having serious medical issues earlier this year. That way, legally, my employer cannot hold time taken off for doctor's visits, etc., against me.

But I know that everyone has noticed that I'm ill, that I sometimes work from home (my supervisor allows me to do so once or twice a week); I don't know yet what impact this will have on the long term status of my job. I do worry about it.

I've had a few autoimmune issues for most of my life (Hashimoto's thyroiditis, asthma, psoriasis), but several strange symptoms (difficulty walking, peripheral neuropathy, blurry vision, brain fog, etc. etc.) developed over the past couple of years and I was eventually diagnosed with autoimmune hepatitis, fibromyalgia, and rheumatoid arthritis this past summer. By the time I was diagnosed with celiac disease (this month!), I was in a wheelchair.

The fact that I've had gastric problems and "IBS" since I was a child indicates to me that I've had celiac disease longer than any of the other autoimmune issues. This seems consistent with the following medical journal article by Fasano, who says that celiac disease can be the initial problem that literally "opens the door" for other autoimmune diseases to develop: http://ajp.amjpathol...ract/173/5/1243

Surprisingly, my husband and mother have both been VERY upset with me for being in the wheelchair. They seem to feel that I'm "giving up". It didn't seem to matter to them that I can no longer walk for more than a few yards at a time without excruciating pain; I should just "suck it up" and keep trying! Lately my husband has started to become a bit more understanding, and my mother no longer brings up the subject because it starts fights....but I did think at one point my husband was going to leave me.

Fortunately, the gluten free diet has not bothered my husband; I "sold" it to him using other peoples' testimonies from this forum about how they no longer have fibro or RA symptoms. I know that he's hoping that all of my other autoimmune diseases and issues will magically go into remission now and that I will be able to get out of the chair. But I suppose I'm afraid of what will happen to our marriage if I *don't* improve enough to no longer need the wheelchair!

It's sad; I was really depressed after reading many of the earlier posts in this topic. The traditional marriage vows say "in sickness and in health", don't they?

JoAnn

[cmom]

Yes, people often forget the vows they made, or they weren't sincere when they said them. I had worked in my job for about 6 years, when I was given a new duty of riding the special needs bus. This route lasted 1 1/2 -2 hours and went out through the country where there were no public restrooms. I did try to do this duty until I started getting sick every afternoon and panicking whether or not I would make it back or not without an accident. I finally spoke to my principal who was very understanding and set out to have someone else do this duty. When she spoke to my special education employer, they told her she did not have to keep me if I couldn't do my job!!! I had been doing it well (I felt) for 6 yrs, and now they were saying to get rid of me!!!! However, my principal said she was not about to lose me and was very firm. I will always be grateful to her for that and I am still employed over a year later.