THALASSEMIA and your PROFESSIONAL LIFE - Thalforum

avneet · April 24th, 2005, 11:37 AM

hello friends,

most of us who visit this forum regularly are into one or the other profession or job.
i want everyone to share their experiences with all of us where their professional life n thal sumtimes go hand in hand or sumtimes go against each other.

to start of, i have told just 2 of my collegues about my thal coz even i need to get out of my work place on saturdays for my transfusion. with their cooperation, i save my leave by attending office on saturday in the morning n go for transfusion in evening shift.

i havent faced ay prob. relating to transfusion till now but what create prob. fr me is desferal.

a hard day in office, around 9 hrs of continous work a person is natural to get tired bt its double tiring wen i have to put desferal all night.
to sum up i dont have relaxing day coz i have to work n in night i have sleepless night which again give me an another unrelaxing day at office.
phew wat a vicious circle it is.

so i spend most of my time on sunday sleeping and sleeping and sleeping.

now here i ignore my friends n family

it was me who said in international conference that i'll put my best efforts to spread awareness abt thalassemia but becoz i spend most of my sunday sleeping n lazying, i miss giving my contribution in plans by my friends

i dont know whether its thal who is torturing me or i ignoring thal

but whatever it is, i have to keep going n adjust both of my life so that i can go fine in my life

please share your experiences too with us

vikaskapoor · April 26th, 2005, 03:07 PM

hi frnds,

well avneet that is a v imp topic which needs to be addressed here.

i also worked for a company a year back and i also faced same kinda problem , i also didnt told anybody about my problem except my boss. and i know most of us will have the same kinda trouble telling our own colleagues about our thal and thats natural coz we have our insecurities and what insecurity dont even try to ask me coz i dont have any answer...
and as far as my transfusions are concerned i get them done by taking a leave as my boss was v cooperative . so i didnt have any problem in this .
and i know this time problem was with me also , even though i had a seven day job with no holiday in it, i take care of all the ppl around me, my frnds my family ,some ppl will have a hard time in thinking how i did that but to me that was very simple and only answer to that is either you love your frnds and family or u love your rest or full day nap. u know ppl who dont have anything to say they i dont have any time , one should learn time management then and not blame our thal for that, what the hell our bloody thal do in our time management..
when ppl say that i dont have time then they should take classe from me to manage it. i have a bussiness to run , i have a seven day wrk and there can be emergency anytime, but inspite of that i make myself available for all my friends, my family, my society thal india , t.a.s and all my relatives.
all stupids lacking the quality of time management pls excuse our thal...plz...

regards
vikas kapoor

Quote:

Originally Posted by avneet

hello friends,

most of us who visit this forum regularly are into one or the other profession or job.
i want everyone to share their experiences with all of us where their professional life n thal sumtimes go hand in hand or sumtimes go against each other.

to start of, i have told just 2 of my collegues about my thal coz even i need to get out of my work place on saturdays for my transfusion. with their cooperation, i save my leave by attending office on saturday in the morning n go for transfusion in evening shift.

i havent faced ay prob. relating to transfusion till now but what create prob. fr me is desferal.

a hard day in office, around 9 hrs of continous work a person is natural to get tired bt its double tiring wen i have to put desferal all night.
to sum up i dont have relaxing day coz i have to work n in night i have sleepless night which again give me an another unrelaxing day at office.
phew wat a vicious circle it is.

so i spend most of my time on sunday sleeping and sleeping and sleeping.

now here i ignore my friends n family

it was me who said in international conference that i'll put my best efforts to spread awareness abt thalassemia but becoz i spend most of my sunday sleeping n lazying, i miss giving my contribution in plans by my friends

i dont know whether its thal who is torturing me or i ignoring thal

but whatever it is, i have to keep going n adjust both of my life so that i can go fine in my life

please share your experiences too with us

Pranav · April 29th, 2005, 06:02 PM

hi all

Its really gutsy of u vikas by telling your boss about u being a thal. even i like avneet would tell only a few collegues rather than my boss. surelly now we are used 2 desferal
and it should not bother u avneet, believe u would get used 2 with your timings in few months and everything will look as it was earlier.(before taking up the job)

Pranav

bosegaurav · April 30th, 2005, 01:46 PM

hey ppl
soemthin bout the profesional life of ourz n the fact that whether its gutsy on our part to tell our boss or not...........
there cuz b a lotta perspectivez to that but first of all we need to understand n look back at the fact that led us to the formamation of FFO n later TAS.... it was because of the awareness which already did not exist n hence we thought we need to tell more n more ppl bout it coz if we go out in the society today n say we r thalz, then we surely wont b accepted ... b it marriages, jobz , or n e thin else for that matter
so i guess todayz need is not really to b bold n go out tellin ppl that wat we hav, rather,,,,,,,,,,,,,,, give it some time, achieve sumthin n then let the world know who we r or wat we hav, n then telll em that "" see!! thal did not in n e way hinder my achievements " n we too r capable of watever we wanna get.
thats wat we need
i will b startting to work from monday n i wont b tellin n e one bout me
i mean y shud i n wats the need
i need no favourz
i need an opportunity, an equal chance, give that to me n then see wat i ca do

well!! thats the way i believe
wud love to get some feedbak from all u great ppl

regards
gaurav

gagancha · May 1st, 2005, 03:41 AM

Hi everyone
i am working for a call center i have not told my company that i am a thal nor any of my collegues as i can lose my job my work is stressful i work for 9 hours and at times i have been forced to work extra by my superiors my offs can be on any day of the week my timings change every week at times i take blood transfusion after it is due and i am unable to take desferal regularly with great difficulty i take 1 0r maximum 2 a week
Most of the time i work in the nights i come home i dont get sleep nor can i eat my apetite has gone down i work in fear that i will lose my job if the company comes to know i am a thal no company will give a job to a thal as they describe us as medically unfit not even the govt will give a job to a thal nor any kind of help there was a case in delhi where a girl was rejected by a company i think a it company even though she was well qualified she made a mistake by accepting she is a thal during a medical exam when i come home i am always in tension i work in tension and sleep in tension my work is very stressful i feel so tired and exhausted but i dont have a choice thats life

Pranav · May 1st, 2005, 04:19 PM

hi

wish u all the best for your job Gaurav. what i meant was not telling your boss before or when u have just taken up the job. i myself about a year ago took some traning for work in international call centers i did not intend 2 tell them bout myseslf but also was not able 2 stop myself.
i had told bout it 2 most of my friends & a trainer. Well gagan after that case bout which u r telling most of the call centers know bout us & also that we r same as any other person.So dont b afraid u can go ahead & tell them about u maybe, say after a month or 2.

regards
Pranav

gagancha · May 3rd, 2005, 04:46 AM

Hi
there is awareness about thal in delhi and mumbai but there is lack awareness in bangalore about thal there are few cases of thal as compared to delhi and mumbai the doctors here are unable to guide the thal patients properly when we join the companies here we have to sign certain papers where it says that we are medically fit i had to leave my previous company as i had signed papers saying i am medically fit

Pallavi Singh · May 4th, 2005, 03:04 PM

hi guys,

i agree with u guys in bits and pieces as each one of us have a different life, different profession and different exposure.

i also face the same probs as u guys, being a corporate lawyer, i have long working hours, 6 days job and take BT on sunday, so there is hardly any time left. i would say that each one of us being a thal or non-thal goes through a tough phase in our carriers when u are trying to prove urself and achieve a place for urself so that ppl around u can value u. its more abt managing ur priorties more than time management. we all have our own ways of managing time. its the priorities which really differ from person to person. for me my work has been the top most priority since i walked out of law college. i have been working hard, not ignoring my health but trying to maintain a balance. once i was able to carve out a place and respect for myself at my workplace, i got the confidence and strength to tell my boss abt my prob and believe me he took it really well. i can easily tell him that i have BT or doctor appointment and take off from work. but at the same time it is always impt to remember that ur work shldnt suffer bcoz of ur personal problems, so i always remain responsible to work and take off only when its urgent. also, i dont like taking favors and getting some kind of preferntial traetment from my boss. i want all those diiffcult assignments which my other collegues get.

To survive in ur work place, its impt to be a sincere and responsible person, ur boss and collegues will automatically respect and value u. once they respect and value u, they will be considerate towards ur probs.

I think its absolutely ridiculous if some one rejects a job to a thal. i would say its there loss. we shld not lose heart bcoz of such ppl.

in managing my priorities, i also sometimes feel really guilty abt being non-participative in thal india activities and specially when i look at our dear friend vikas, i all the more feel guilty. but i guess we all get our share of good work to do whenever the time comes and i am always ready for any such opportunity. with friends like vikas i am all the more inspired to be part of thal india.

to end the lengthy discussion, my piece of advice would be to face ur probs strongly, work hard and carve out a place for urself and dont let anybody take pity on u. we are as good as anybody else in this world and no one can call us medically unfit.

so, cheer up guys...
Pallavi Singh

jaynieh · May 4th, 2005, 09:31 PM

This isn't just a problem in India. I am in the U.S. and although we have the Americans with Disabilities Act, that didn't keep my last employer from firing me. They said that my frequent absences (for medical treatment) "lowered morale for the rest of the office". It didn't matter that I worked frim 7am to sometimes 10pm, never took lunch, and worked well over 50 hours per week. They were aware of my thal, and had letters from my doctors stating what my treatment entails. I tried to bring a lawsuit against them afterwards, but the only employee-side attorney I could find was too busy to see me, and his paralegal was rude and said that I deserved to be fired for missing too much work. So I was pretty discouraged and didn't pursue any legal stuff.

It's a sick, sad world all over sometimes. People just don't understand. Even my family is uncaring. My husband, too - he just wants me to earn money again. How do I go about getting a job, when I need time off for treatment constantly?

tseref · May 5th, 2005, 09:23 AM

I think this could be an interesting and useful discussion for everybody. But don't you think that it would be more meaningful if each writer gave us a lit bit of info about his/her marital status, level of education, nature of job, availability of anti-discrimination law in the country?

I live in the Northern part of Cyprus. And over here, most thals are employed by the government. This is because we have a law stipulating employment to a certain percentage of disabled persons. Compared to some other disability groups thal seems to be a cause for preference for government depts.

I always believed that the more educated I got the more likely it was for me to get a better job. So the moral is if you like school continue as long as possible...

I have a BSc in Business Administration from the US and employed as a mid level Administrative Officer by the Immigration Dept. Private sector usually pays more but it may be easier to get time for treatment if you work for the government. And work hours are shorter as well.

Having said that I know, for example, that thals have not been so lucky in getting government jobs in the Southern part of Cyprus because of health status.

But for my friend in the US, I would urge her to find a way to sue the employer. This is not easy but it pays in the long run. It may be a good idea to find individuals or organizations who could support her legal battle.

Rights unfortunately are not granted easily, one has to fight for them.

Life as a whole is a balancing act. Time management as well as prioritizing are both important. So are other factors. It is even harder if you are married. Needles to say life is not easy.

One always should try to keep in touch with family and friends but this also depends on the proximity, availability of time, mutual understanding and so on and so forth. I end up sleeping during the weekend as well.

Using desferal is difficult for me as well. For some it seems to be no bother but for me it is like another "job". This may be because I started using desferal later on in life.

gagancha · May 5th, 2005, 10:55 AM

Hi
i agree its their lose but how long do you think we can go on with this keep losing jobs looking for a new one then losing it again and if tell the company before joining that i am thal i wont get the job and when they come to know later they will find some false reason to remove me or they will create situations were they will make me leave the company by imposing heavy pressure on me i have to fight for my life as well for my a job and my survival this the life i need to live a burden to everyone and to myself i say i am medically fit but they i am not is there anyone to question their decision that i am medically fit no one can question them not even the govt our constitution says equality to all equal opportunities to all to prove themselves but there is inequality no one can say anything is there anything to smile or be happy about ?????????/

anubha · May 5th, 2005, 02:09 PM

hey guyz
frst of all lemme appreciate the initiative taken by neeti by starting this thread in th first place...i was kinda so bored of all those threads exhibiting garrulousness abt the nuptial knot.c ppl ,strictly , i dont even have A right to"respond" to this thread coz i m not yeta professional. but of course i can address certain topics about which i have alwayz ahd differences with people.frst of all dear gaurav vn u use terms like "equal opportunity" n all lemme tell u equality is only possible in a graveyard!!n thats not just a concept of the legal world , it actually applies to the everyday world.this by no means implies that i vud like to have favors frm my boss or anything but just telling you that u r favored coz u DESERVE TO BE FAVOREE NOT BECOZ UR PECULIARLY PLACED BUT COZ UR WORTH A MILLION DOLLAR "INSPITE" OF UR BEING PECULIARLY PLACED ;so using such vague n abstract words is not free from its own dangers.now coming to the topic......guyz vat is the damn need to just open the door , peep in n say....."sir, im a thalassemic.....what do u think?????'how can u possibly start meditating about such things??? as far as my experince goes , somehow my boss got to know that i was thal n i duuno y but he didnt seem2b affected by that at all.he made me run through the court like all the other interns. my other boss dint think twice about asking me2 b up through the night2 do the research work for her ,etc. this is just by way of illustration.....that if ur good at ur work n people know that ur worth all that they are giving u then vrs thal honey!!!!!!
about desferal..there i agree with vikas..i guess its all about time management.neeti , i used to take desferal n there were dayz vn v had to stand 4 more than 4 hrs at astretch before the magistrate to take down notes. but i used2b as tired as any other intern. so i guess u can tackle that as u can tackle....mmmmm...cold n cough?????
SOALL I WANNA SAY IS THAT THINGS ARE NOT ALL THAT BADDDD!!!!!!!
SO STAY COOL N STAY "PROFESSIONAL"
BEST WISHES
ANUBHA

jaynieh · May 8th, 2005, 01:56 AM

OK, so a little background is needed. Sounds like Anubha has a pretty good attitude. And yes, things aren't so bad SOMETIMES. However, the world of work is a pretty bad place sometimes.

I am 41 years old, married 19 years, no children, and Native American (Cherokee). I was diagnosed at age 30. I'm not the Major type of thal, but Intermediate. My treatment consists of Procrit or Aranesp injections weekly, with periodic infusions of InFed to treat a iron malabsorption problem. All this treatment does help, but I still have symptoms such as extreme fatigue (I sleep constantly, it seems), and a compromised immune system.

As for my career, I am, by training, a Systems Analyst. The company that fired me was a software company. I've spent the last year back in college to finish my degree. I've also spent the last year actively looking for a job.

The Americans with Disabilities Act isn't enforced in this country. Employees can't afford the legal services to prosecute employers, and no lawyer wants to take on these cases. They're just not profitable.

Jaynie

Smurfette · May 8th, 2005, 03:23 AM

I Have Just Read All Your Posts!!!!

I Am Sorry To Say That You Are All Weak!!!!

How Hard Is It To Tell Your Employer That You Need To Have 1 Day Off A Month For A Transfusion....

I Have Been Working Now For Many Years And All The Jobs I Have Had..i Have Told My Employer From The Beginning That I Need To Take One Day Off A Month So I Can Go To The Hospital And Get My Transfusion...if They Are Understanding And Compassionate You Will Get The Job...

If You Dont Get The Job..well Its Not The End Of The World..there Are Many More Other Jobs Out There That The Employers Are Willing To Give People Just Like Me And You A Chance..

I Am Sure That Not All People Are The Same!!!!!!

In What I Do At The Moment All Of My Work Mates Know I Have Thal Major And Go To The Hospital For My Treatment...i Dont Get Questioned About It Either...

I Am In The Pharmacy Industry So I Am On My Feet All Day...to Those Who Complain About Not Wearing Their Pumps....dont Complain Just Wear Your Pump As Much As You Can...

And If Your Tired...well Thats A Sorry Excuse For Not Wearing It..i Used To Go Out With Mine On....i Am Sure That You Can Probably Wear Your Pump At Work And Disguise It...

I Have Worn My Pump To Work Yes!!!! It Didnt Get In The Way Of Anything..it Wore It Discreetly...

The Position I Am In Now At Work...its The Best One I Can Ever Have....even Some Of My Customers Know I Have Thal Major..nothing Wrong With Telling People...we Are Not Leppers!!!! Its A Disorder Not A Crime!!!!!

I Dont Understand Some Of You!!!!!

So Tell Your Work Mates And Others Around You..i Am Sure That You Wont Be Treated Differently From Other People...if They Do Treat You Differently..well They Are Themselves Ignorant Of The Things That Are Going Around Them....

I Wouldnt Give Those People The Time Of Day...

Sorry To Bore You All...but Reading This Post Made Me Alittle Pissed....

tseref · May 8th, 2005, 08:08 AM

I respect everybody's opinions and feelings. But for the sake of understanding Smurfette better I would like to pose a few questions.

"Sorry To Bore You All...but Reading This Post Made Me Alittle Pissed...." Do you think we are trying to get you pissed? If we are not free to talk about our problems, why is there a need for such a site?

"I Am Sure That Not All People Are The Same!!!!!!" Don't you think this applies to thalassaemics as well. Don't you think we are bound to have differences, just like anybody else, as to how we percieve, feel and react to different issues?

"if They Are Understanding And Compassionate You Will Get The Job..." As a citizen of a democratic country, do you think the best you can ask for is understanding and compassion?

Jaynie, I understand you very well. But do you think the passage of the Americans with Disabilities Act was easy? Do you know how many people fought very hard just to get such a law passed? Are you aware of Cooley's Anemia Foundation? As a person skilled in IT shoould not you be able to reasearch civil rights organizations very easily? I agree, lawyers in general will not be interested in such a lawsuit but I am sure there would be a few who would. But then again it is your decision...