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Should this disease make one accept to be treated as disabled?

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Crohn's Disease
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Posted 1/30/2012 8:41 PM (GMT 0)
Hi,
I just have a question regarding my career. I'm a 34 y old female. Since graduation, I have worked very hard, learnt a lot and was known for hard work, perseverance and trying as hard as possible to perfect my work. This all I could achieve although I have had GERD and gastritis since my last year in college and could become first of my class. This hard work enabled me to hold a masters form one of the most reputable universities in my country. While I was a masters student, I used to get scholarships and at the same time was successful at work and managed to succeed academically and administratively despite the fact that I used to commute 2 days to another city for 5 years. This all was until 2 years ago. Recently, people have started to deal with me differently. I'm not given anything challenging anymore. Today I was asked: Would you be able to do this or would it be a lot of work for you? If you can't, just apologize and it is understandable. I was devastated. Is this because of Crohn's? I can't say I hate this disease as it's God's test but it interferes with my ambitions and dreams. I don't like anybody to tell me that you are disabled even if implicitly. Yes, I have to admit that every semester I am absent two or three times on the days of my classes. The last stomach flare up that lasted for 10 days added to people's regarding me disabled. I never neglect my wok even if I'm sick. I insisted that I can do the work, esp. that it entails a large admin part but I'm afraid. Should I challenge myself but when Crohn's hits, I can't guarantee anything or should I admit it and accept it that I can't exert more effort than that and I managed to make myself somehow good in my field.

This feeling of depression was worsened by my discussion with the GP at work. I told her I need to reduce my absenteeism and return to methotrexate (which I stopped because of the stomach flare up). She told me you already got hypertension as a side effect of pred, what else would you like to get. Besides, she mentioned that all I got is chronic proctitis and enteritis throughout my small intestines (jejunum, ileum and TI)and this does not indicate Crohn's. I told her that my GI wrote Crohn's disease on my prescription, I take Entocort and feel better while on it, I have mouth ulcers and erythema nodosum but she told me that this is not enough. I have done all possible tests for 5 years and after all this we suspect it it is not Crohn's. My GI is one of the most reputable ones in my city but he refuses to redo a colonoscopy at the time being. BTW, I have been on pred for a year and a half and just stopped 2 weeks ago and this could be the reason why there aren't any ulcers in my scope. I'm devastated.

Should I just accept the fact of Crohn's making me weak and unable to pursue what I have been doing or should I fight?

Thank you very much for reading the post and for your replies.
Posted 1/30/2012 9:23 PM (GMT 0)

minnietoty said...
Hi,
I just have a question regarding my career. I'm a 34 y old female. Since graduation, I have worked very hard, learnt a lot and was known for hard work, perseverance and trying as hard as possible to perfect my work. This all I could achieve although I have had GERD and gastritis since my last year in college and could become first of my class. This hard work enabled me to hold a masters form one of the most reputable universities in my country. While I was a masters student, I used to get scholarships and at the same time was successful at work and managed to succeed academically and administratively despite the fact that I used to commute 2 days to another city for 5 years. This all was until 2 years ago. Recently, people have started to deal with me differently. I'm not given anything challenging anymore. Today I was asked: Would you be able to do this or would it be a lot of work for you? If you can't, just apologize and it is understandable. I was devastated. Is this because of Crohn's? I can't say I hate this disease as it's God's test but it interferes with my ambitions and dreams. I don't like anybody to tell me that you are disabled even if implicitly. Yes, I have to admit that every semester I am absent two or three times on the days of my classes. The last stomach flare up that lasted for 10 days added to people's regarding me disabled. I never neglect my wok even if I'm sick. I insisted that I can do the work, esp. that it entails a large admin part but I'm afraid. Should I challenge myself but when Crohn's hits, I can't guarantee anything or should I admit it and accept it that I can't exert more effort than that and I managed to make myself somehow good in my field.

This feeling of depression was worsened by my discussion with the GP at work. I told her I need to reduce my absenteeism and return to methotrexate (which I stopped because of the stomach flare up). She told me you already got hypertension as a side effect of pred, what else would you like to get. Besides, she mentioned that all I got is chronic proctitis and enteritis throughout my small intestines (jejunum, ileum and TI)and this does not indicate Crohn's. I told her that my GI wrote Crohn's disease on my prescription, I take Entocort and feel better while on it, I have mouth ulcers and erythema nodosum but she told me that this is not enough. I have done all possible tests for 5 years and after all this we suspect it it is not Crohn's. My GI is one of the most reputable ones in my city but he refuses to redo a colonoscopy at the time being. BTW, I have been on pred for a year and a half and just stopped 2 weeks ago and this could be the reason why there aren't any ulcers in my scope. I'm devastated.

Should I just accept the fact of Crohn's making me weak and unable to pursue what I have been doing or should I fight?

 

 

I think you should continue to fight it to try to get better. And this disease is not God's work or Santa's work or anyone's. You should hate this disease just like everyone hates getting a random cold 1-3 times a year.

 

Do you think God lets all those kids die from starvation in Africa, or those people that died in Haiti or the people that die everyday in car accidents or crossing the street. The people that die of cancer of whatever. This is not a test for you, you caught this disease because it was in your genes and you were prone to get this disease. Just as a 300lbs pounder overweight person won't get crohn's simply because it's not it their genes.

 

You did nothing wrong, you just happen to have the wrong genes and it triggered this disease somehow.

Posted 1/30/2012 9:37 PM (GMT 0)
You need to find medical care providers who want to improve your quality of life. I can't remember if you are not able to tolerate 5-ASAs, but treating proctitis with entocort doesn't make sense, as you know, and oral pred is not something you should consider again. MTX made you sick? What about imuran or a biologic. And perhaps this is not Crohn's but UC? If so, then what about surgery as a cure for the proctitis?

It isn't worth your time IMO to worry about what other people think about you. If you do a good job at your work you will get good results. If your supervisor or manager is not respectful of your work then find a new job. If you don't get enough personal time off for sick days find a new job. If you aren't getting assignments worthy of your skills find a new job.

If you aren't communicating effectively with your GI or your GP, find a new one.
Posted 1/30/2012 10:56 PM (GMT 0)
Dear all, thank you very much.
@ Somedude. Yes, Crohn's is caused by genes but I have to accept it. I can't object to something God has given me according to my beliefs.
@ Kazbern. You are def right but unfortunately, I don't have choices. I like my job and my boss, who is away now, read a lot about my disease and sympathizes with me. As for my doc, I have seen a lot of docs, even foreigners who have visited my country but they either saw it as IBS or proctitis that does not necessitate treatment ??? and is not indicative of IBD?? and left me without any treatment. So, since I found that what they said is illogical, I returned to my current GI who has been my doc for 5 years now.
Posted 1/31/2012 12:29 AM (GMT 0)
Crohn's is an up and down cyclical sort of disease from my limited experience. Some days I feel great and can get stuff done, other days I can't get out of bed. I am very fortunate to have a supportive spouse who believes that I can do whatever I want and can be successful at it, which makes it much easier for me to tolerate the bad days and conquer the good ones! I would say that you need to be realistic about your disease, that yes it will make you feel weak and tired and unable to do much, but that it DOES NOT prevent you from accomplishing the things you want most! Just try to have a positive mental attitude and do what you can. Cheers!
Posted 1/31/2012 8:33 AM (GMT 0)
For now, I've actually given up on my dream of a career. When I was working, I was at my sickest. I took a break, got back on feet, and found a new job. Only to find that my illness got worse very quickly. I haven't worked since 2006 now. It's depressing. I have dreams where I'm in college, but can never find my classrooms. This is a repeated dream all the time. Pretty sure I know what that's trying to tell me! I'm sure I could put up a good fight and do it anyway. But I'm certain I'd be a lot more sick, I'd probably be moving up the medication ladder a heck of a lot more faster then I am. Probably even more hospital stays, and who knows what other complications. I don't know what it is about working that does it for me. I'm guessing it's the stress, the having to get up early. The trying to balance the home and work life. Whatever it is, I decided that it was best to stay home (at least for now) and focus on my health.

I'm lucky to have a husband that can support our family on the one income. I haven't worked long enough to even claim disability. Got sick with this at 18, stayed home and raised my son until he was about 6. Put in a few years of work, only to get REALLY sick. But I'm only 34. It saddens me that this is probably it for me.
Posted 1/31/2012 7:44 PM (GMT 0)
Dear all, thank you very much. You made my day. I was really devastated and crying all the time. Thanx for the support and the encouragement.
@C6H12O6. Ill fight my own battle and I'll show people that I can do it.
@ Tsitodawg. You touched a raw nerve. Yes, I need a finalized diagnosis myself. I was questioning today,btw, the proctitis and wondering whether it is correctly diagnosed or not as I failed all possible proctitis meds. I'll keep fighting and trying to prove myself.
@Jen77. I think I'll do the same as you when I get married and have children. The first surgeon I saw told me that my condition will become better if I stay at home and get away from work stress but at the time being I can't for financial reasons.
All: Take care!
Posted 2/1/2012 5:31 PM (GMT 0)
Tsitodawg, thank you very much. Well, yes, I need a diagnosis and sometimes feel I'll go nuts. When I negotiate with the GP that the cause of this darn, unresponsive proctitis, is IBD whether Crohn's or UC, she says no. The other causes do not apply to me. I keep reading but find no other clue. Everything is like that. As you have been through all possible tests and scopes, I have too. When someone suggests that there is a new doc and he might know the cause, I thank him/her. I can't see docs, other than my GI, more than that. I undergo tests and CTs and then they tell me it's functional IBS. I ask them: Does IBS cause such severe pain, weight loss (before pred), fever, persistent D, fatigue, mouth ulcers and erythema nodosum? They reply negatively but insist that there is no clear cut granulomas Crohn's in my biopsies. From where should I get this? I don't know?

On the other hand, my doc does not like arguing. I was stunned when I asked him for a medical report and he wrote Crohn's disease. I think he won't write such an official letter hadn't he been sure of the diagnosis.

I'm still very confused and wish I could get a final diagnosis. My doc told me that if En resurface and a dermatologist confirms that they are En, he will def switch me to Remicade. But before this happens, he can't. So, I'm waiting for the lovely EN to emerge.

Take care!
Posted 2/2/2012 4:04 AM (GMT 0)
I just wanted to say about work, try not to take people's comments to heart. They are trying to support you in the only way they know how and they may feel as uncomfortable saying it to you as you feel hearing it from them. I used to get SO angry always hearing "How are you?" in what I always took as a condescending tone. I knew what they meant, not as a standard greeting, but how diseased are you today? It made me furious! I would answer their questions the best you can, but afterwards let them know that you really don't want to be treated any differently than anyone else. Perhaps let them know that you would be more comfortable if in the future you do need some help or support that you can come to them to ask for it, instead of them offering like you are some how less of an employee. Take a rain check, then, when the time comes you can "call in a favor". Most of the people saying things like that are doing it because they do care, but don't realize their words don't carry the same tone of compassion with you as they might with someone else. I actually work with people who have disabilities and one of our mantras is Presume Competence. You have not given anyone any reason at work to believe you are anything but competent and good at your job. I'm sure your record shows that you are always giving 100% of whatever you have available and that's all that matters. Everyone has things that happen in their lives that may impact their work at times, whether it be illness or family issues; even plain old burnout from on the job stress. There's no reason if you've shown quality work that you should lose any confidence in yourself or feel like you're being discriminated against because you just happen to be human like the rest of us. I don't know if you work in a touchy feely kind of job like I do, but we actually strive to figure out how we can support one another through tough times universally... so those of us who suffer from "invisible illnesses or disabilities(if you want to use that word)" don't need to be singled out when they are having a rough time. We accept that being a human means crap happens and we work as a team to support each other. It shouldn't be a matter of "special treatment" it should be how everyone is treated. Maybe you and some colleagues could start a small committee with the goal of getting people this universal support.

So to answer your question, yes you should fight, but only with support in place. Strive to do your best and you'll never have to regret not giving it all. Don't feel bad about taking care of yourself either though as this is very important with what ever digestive ailment you have. I wish you the best and hope to see you make the world a better place even if it is just inside your own work environment. .... and THAT can be God's test for you.
Posted 2/2/2012 8:39 PM (GMT 0)
@Crashbabe2. Thank you very much. Well, I def can't say words to what you have mentioned about the real "disabled" people and the "invisible" disability. I have two colleagues, who got cancer and one with Sjorgen's. Sometimes, frankly speaking, I find that they are healthier than I am. Add up, my sister is asthmatic and I used to sympathize with her all my life. Of course, I can't compare Crohn's to cancer. Thanks God that I got Crohn's and not cancer. But the viciousness of Crohn's resides in its unpredictability, whenever it wants to hit, no matter how cautious one is regarding food and meds, one will flare up.
@ Tsitodawg. Thank you very much. Well, the insurance system in my country is different from that in the US. Although my GI has written Crohn's disease on my prescription, I can't dare mention this word in front of him. He prefers me to say "IBD" rather than Crohn's. I need to negotiate returning to MTX with him. It was suspended because of the stomach flare up and I don't know whether I should return to it or not. My colon is not good, I have severe C for more than a week and then burst in explosive D. The only thing that is under control is my intestines because of Entocort. As for the proctitis, it is a complete wreck. However, I'm really very afraid of having this stomach flare up again for other ten days.
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