dysautonomia

[Guest tearose]

Good news bad news.

I am feeling better than I have in years. I think it is because I moved to a no step ranch home, I kept up with tiny bits of activity and began being faithful with several supplements, balance my electrolytes, I use compression and eat small frequent good foods . I still must take my tasks and break them down, I still need more naps than the average bear, but I am doing better. This is the good news.

I must find a way to bring in income. This is the bad news. I am going to be very careful that any job I do has a lot of flexibility, but I am concerned that even with all I do to compensate...a potshole as it can may appear from no where...

Do I have to "tell" my future employer (who does not exist yet) that I have physical challenges? Are we allowed to ask for accommodations after we get the job? What is the law regarding this?

any thoughts?

tearose

[corina]

Tearose,

thank you so much for sharing your good news. My husband and I are considering to move into a no step house also, but we are waiting for something to be build in our village. We don't want to move too far, as it already will be a big step to take for the children as well, and my great doctor and PT live here, which means that if we would move to another village we would have to change doctors.

I'm really glad you're doing better because (I think) I remember your struggle because of this move (hope I'm right about this).

About you going back to work (one way or the other). In my country there are special programmes for people who want to re-integrate. They are specialized in working with people who haven't been working for a long time, in way of helping to deal with the energetic but also the mental changes that it can bring. They also help you find a job, or find something that can be done from home. I think such a programme would be perfect for those of us wanting to start working again, because it pays attention to all parts of going back working.

I really hope there are such programmes in the US Tearose, and I want to tell you that I really admire your strength. Leaving your home to go live in a no step house can help a lot, but asks offers as well )from everybody inyour family).

Good luck Tearose, hope this helped a bit. And please, don?t overdue, take care of yourself,

Corina

[yogini]

Tearose,

I am SO glad to hear that you are feeling better. I hope things continue to improve for you.

I'm dealing with this same issue too. My current employer has been great and they've let me work part time this year. I know this is a temporary arrangement, and I need something less stressful and with more regular hours in the long run. I have just started interviewing for a new job. I am working with some headhunters, who I told about my situation. I requested that they not mention the issue up front to the potential employers but that we would figure out a way to bring it up at the right time. I am not sure if I will do this before I am given an offer or after.

I don't know whether there are any laws on this, but I personally want to be honest in order to have a good relationship in the new workplace. The key is to do it in a way that you make them aware about the issue but reassuring them that you are able to do the job. I figure it's a bad sign anyway if the employer gives me a hard time about it. We need someone that's going to be understanding.

Also, please make sure that you aren't pushing yourself too hard in trying to go back to work. Money is of course important, but your health is more important and you don't want to backtrack. The headhunters have been trying to sell me on some great jobs out there, but I am holding out for something POTS-friendly. I hope you can find a job that will help you ease back into things -- maybe start off with something low stress, part-time, where you can sit or even something where you could work from home?

Good luck in your job search,

Rita

[corina]

Tearose,

what I forgot to add. In my country there are laws for not telling your health isn't as anybody elses (although we never know for sure). I mean: if you're not telling about health issues and you will get sick again (or become worse than you are now) they are allowed to fire you.

It's a very difficult thing because our chances are much less. When I was in your shoes, I would tell about it in the final interview (the one that you know they want you and you talk about salary and that stuff). If you're open and tell them, it's their choice. But also tell them how good you are and about all your qualities and what they would miss if they would choose someone else. I don't know about the laws in your country but make sure you will be well informed!

Wish you lots of luck Tearose!

Corina

[Ernie]

Hi Tearose,

I would tell them only if it's the law and if I need special accommodation.

Ernie

[Sunfish]

from the legal side of things, there is actually law in the US that - for most jobs - protects one NOT having to disclose any illness, disability, etc. that said, obviously if accomadations are needed telling is a must. and like others have mentioned there's something to be said to the stress of "hiding" your reality...especially if it comes up later...

there are also laws that protect a worker's privacy in regard to once you tell someone. i.e. if you talk to the HR department they cannot go tell the whole office of your health issues. i don't know all the intricacies of this & it varies depending on the organization of a place, nevermind the fact that people may not always follow the rules (knowingly or otherwise...)

i had a bit of an odd situation when hired for my first job out of college. i actually went through the entire interview/hiring process while doing the best i had been in years...off all meds, pretty active, not really a day-to-day issue for me. so...it wasn't something i thought about. then in my last semester, actually a few weeks after my final interview, i ended up really ill, spending half of the next two months in the hospital, graduating only through excessive paper-writing via laptop from my parents house 500 miles from campus (under dr. grubb's watch back in ohio). i actually accepted the job offer from my hospital bed. so i was hired when good health was aplenty & started coming off of 6 months of the exact opposite. i sort of knew at some point someone should know at the office "just in case" but didn't know how/if/who i should talk to. i made lots of self-accomadations but other than the one fellow new-hire who i had been open & honest with, no one knew a thing. until in mid-august i had a seizure-type black out in the office. sort of took my process of choosing out of my hands. back at work 3 days later & talking with my manager, she said she would have rather known. retrospectively i think it was more lip service than anything, but it did sort of seem like i was hiding things from them. and going forth it did make things easier with doctor appts, etc...my supervisor at the time was great with it...i was always worried but as long as my work was done well he didn't flip out about a longer lunch break if i was stuck at an appointment, etc....when supervisors were shuffled due to company changes a year and a half later it was another story. even when i was doing great, that boss' knowing that i had health issues was a definite disadvantage...

so the point of all my long ramblings is that it really does depend on the situation. there's a good chapter on this exact issue - "To Tell Or Not To Tell" in a book i mentioned not too long ago called Cereal For Dinner. it's slanted toward mom's living with illness but much of it is applicable to all. i'd highly recommend the chapter about work as it really fleshes out a lot of the issues....

good luck, and first & foremost congrats on how well you're doing...it's always so great to hear. it's especially encouraging to hear how helpful the different life-changes have been for you health-wise.

here's hoping for lots of continued good days,

:-)melissa

[Poohbear]

I am so happy you are improving some!

It's late so I hope I can keep all my thoughts together on this....

1-Contact JAN (Job Accomodation Network) and ask them these questions just to have information

2- I don't know that you have to tell your employer (unless you need accomodations) but there are some "sticky" issues. First off, on a resume or at interview you need to have an explanation about any lapse in employment. Second, if you want/need your job protected under ADA act then they have to know (but as many of us know, even though we are supposed to be in a non-discriminatory world, we are not, so if you tell them you have a medical condition they may not hire OR they may hire trying to meet their "stats"). Third, if you choose NOT to tell them you have a medical condition, and your condition declines and you become unable to work or need accomodations, you don't have the same security in being covered under ADA because you didn't notify your employer prior to taking the job. So there is a bit of a catch 22 here.

3-Also know that MOST (if not all) employers Long term disability carriers have a clause in the policy language that states if you have EVER been disabled with a particular condition and you become disabled again with the same condition your current LTD carrier is exempt from covering that disability. This is important to know because even though your employer may have LTD coverage, if you become ill with the same condition you may not receive any benefits from them. This is sometimes not the case if you are paying all the premium for the LT coverage. Just read the fine print and ask questions!!

Hope this helps and I wish you the best of luck! Please keep us updated and let us know what you learn

[EarthMother]

Congratulations on your new home and that you are going through a relatively good spell.

As for what to tell the prospective new employer .... your heart will tell you when you are face to face. You have amazing instincts and vision Tearose, this one will be clear to you when you are in the moment.

Simple fact is we don't know what the future holds ... a good spell may last days, months or even years. It would be hard to predict all the things that could happen or all the accomodations we might need. You'll know how much to share and when to share it as you journey down this road.

And remember, we are all right beside you cheering you along, holding your hand when you need support and of course bringing cookies to celebrate all your victories.

Good thoughts,

EM

[Guest tearose]

Thank you for sharing in my good news. Yes the move to the no-step house is a tremendous help! And yes, I had been in a long period of decline for nearly two years!!!

I only hope that this remission is not short-lived and I will remind my body, mind and soul to embrace the moments!

I will share when the future employer is ready to listen!

I will be careful and find a position which allows me to sit a lot!!!

Okay, I'm about to go fax someone my resume!

best regards, tearose

[Christine]

Hello,

Best of luck finding your new job. I hope it works out well for you. You can look online or call an disability attorney. Look under the disability act. I found out a lot of information when I was asking for a transfer from my job. My job became too stressful on my body. I worked with severe Mutiple Handicaped teenagers that I had to restrain on a daily basis. Well, let's just say that my body would shut down for days sometimes weeks at a time.

I would research the infomation first then when you talk to your future employer you can have you facts in order and believe me they will want to make arrangements for you. Depending on where you live etc.. I know you don't have to explain your disability but you have to prove you have one. They don't need to know every detail but there is a protocol for this type of converage. They will be a lot of paperwork and time you will have to invest in this. But it will be worth it. I had to bring a letter from my doctor stating my limitations. Also, I had to go back to my neorologist because my doctor at the Cleveland Clinic does not write letters. I was told to seek services from a disability attorney. I would take the time and research this because in the end it will help you and really once you have all of your information together, it you decide to every switch jobs it won't be a lot of work. I have worked with people with disablities for at least 14 years and I know there are laws out there to protect you. It will take sometime for you to find them out. Also, you doctor will have to be involved.

Good luck,

Christine

[mindylee1]

Tearose,

So glad to hear that you are feeling well. Not only feeling well but really listening to the doctors and your body and taking care of yourself. That is so important. It's so difficult to realize that we do need to rest often and require energy points that can only be spent a bit at a time. So proud of you.

I am concerened about you looking for a job. Do you think that you are well enough to commit yourself? We all require such special care and understanding people around us and that is often so hard to find.

I do think that if you do find a job you should let them know your condition because you really don't want to work with people that are not supportive of what you are going through or have gone through..ya know.

Maybe the best way to do this is to use any connections you have. Talk to friends or family that know your situation and they can help you possibly find something working where they do or for someone that that they know.

However it may be Just keep taking care of yourself and best wishes

Mindy

[DawnA]

I am glad to hear that you are doing so well. Congrats on the new house. I live in a trilevel haveing four levels with the basement. I would love to move to a anch someday.

I have often wondered the same thing if I am ever good enough to go back to work. Don't be to hasty in going back to work. Make sure you are really up to it. However I do understand the need to bring in more money. Take care, DawnA