ET is considered a disability in US?

[AnonymousMike]

Hi all, recently I was applying a job in US. On the website they were asking if I have any disabilities (I am guessing for positive discrimination purposes), and when I clicked on the list, cancer was there.

I am officially diagnosed with ET (low risk) 55M. No immediate issues with my daily life, occasional headaches and on aspirin. So, from the outset I look healthy, but we all know ET is a time bomb, eventually it will most likely evolve into something.

I was wondering if any of the fellow ETs were in a similar situation and how do they present their condition to potential employers. Many thanks for insights.

[hunter5582]

Bear in mind that most of us are not disability lawyers.

From a layman's perspective, ET may or may not be a disability depending on how it presents. Many people are largely asymptomatic and would not reasonably be considered disabled. Others. however, may experience debilitating levels of fatigue, have strokes, or other significant issues. These people would be considered to have a disability and be covered under the ADA. Reasonable accommodations could be legally mandated.

In the USA you are under no obligation to tell an employer about your medical conditions unless they will affect your ability to perform a job function.

While ET may feel like a time bomb, it is not inevitable that it will progress. The uncertainty can be a challenge though. Bear in mind that most people with ET will live a normal lifespan. You are more likely to die with ET than from it.

Wishing you all the best.

[katiewalsh]

Hi. I’m not sure what you mean by disability. I was a disability lawyer before retiring. If you’re asking about disability for purposes of receiving monetary benefits, it may not be. It all depends on whether you’re sufficiently disabled to be unable to do a very basic/simple job. If you’re older and become ill or injured, you’re eligible for benefits if you’re no longer able to work the same type of job you worked before your injury or illness. But I don’t think that’s the kind of disability you’re asking about. I’m sorry but that’s the only one I know about. Hunter is right, ET is unlikely to kill you, something else related to old age is.

[Solyesh]

Good question - I had to get life insurance after ET diagnosis and my MPN specialist was able to provide enough information on how ET should not (necessarily) affect life expectancy. ET (as any condition) can be a "time bomb" but it also can just be an underlying condition with no or little affect on daily lives....

[Phil1955]

I’ve had ET jak2 positive for 10 years I’ve had one thing after another related to my ET

Splenectomy 2014 angina attack March 2015

Haematoma May 2014

Haemateura 2018 DVTs x 2 in 2017

TIA 2018

Skin problems with hydroxycarbamide

So all in all I’d class as a disability 100%

[Plate in reply to Phil1955]

I am sorry, but I completely disagree with you.

[Phil1955 in reply to Plate]

I’m on 1500 mg a day of hydroxycarbamide I take 20 tablets a day I’m waiting on two knee replacements aside from the complications of being high risk with ET

I’ve hardly been away from hospital in last 10 years the aches in my bones throughout my body probably through ET is debilitating. Also I’ve suffered blurred vision since my spleen was removed in 2014 with persistent dizzy spells

[Plate in reply to Phil1955]

Hi Phil, If you feel disabled, then I guess you are. I was trying to convey to Mike that a diagnosis of ET, only taking aspirin, and not feeling any effects could not be considered a disability.

I had two shoulder replacements, fractured ankle, and a broken back so I can empathize with the pain involved all over one’s body.

Best of luck to you in your journey and I was not trying to offend you.

[Phil1955 in reply to Plate]

Hi plate I’m not offended there’s just different ends to the scales of ET I’m under the Christies and high risk I’ve been told also they told me I’m 50/50 with PV & ET

I’ve other problems aortic valve regurgitation to but it’s all controlled I’m just waiting a heart scan

Good luck with everything your going through 👍

[Otterfield]

If you don't feel disabled, I would say no, you don't have a disability. ET may progress or it may not but I assume the question is for now, not for a possible future. In the UK, the question is usually phrased as 'Do you consider yourself to have a disability?" I always answered no. I only have one properly functioning eye but it doesn't disable me. I'm no longer working, but even now, with post transplant fatigue, I don't think I would see myself as disabled.

[LT55]

I work as a consultant in the area of employee benefits - focusing on disability and time-off. And this is very odd to me. While I can't be certain, I suspect the reason for the question is related to ADA(Americans with Disabilities). They are likely asking to determine if you may need a work accommodation under the ADA. Employers have become increasingly more cognizant of their obligations to provide reasonable accommodations to employees. Having said that, the (ADA) actually prevents an employer from asking about the health conditions of a prospective employee.

Again, I am confused. My recommendation would be simply to indicate that you don't have a disability. It doesn't appear you need any work accommodations and you are under no obligation to disclose anything health related to your employer. I suppose there could be some jobs where this is allowed (e.g., pilot or something safety-sensitive), but generally, no obligation to disclose. And again, they shouldn't be asking.

[AnonymousMike in reply to LT55]

I feel like this is more of greenwashing their corporate image as a socially responsible firm. “Hey look we employ this many disabled people in our workforce” to showcase in their investor presentation and their corporate social responsibility pamphlets….

[LT55 in reply to AnonymousMike]

That certainly could be the case...

[SueYoung in reply to LT55]

As a retired Occupational Therapist a disability is when your condition interferes with your ability to do the things you need or want to do in life. As someone with an MPN I’m lucky that I have no complications from my condition so I do not have a disability. Everyone is different, consider how your condition affects your life. If it has no effect on the activities you carry out at present such as your job then you don’t have a disability. This could change in the future but it may not so no point in worrying what May of May not be. Tackle these problems if they occur otherwise lead your best life

Sue

[Plate]

Fortunately for me, I retired after 30 years of work. Two years after I was diagnosed with ET JAK2 +. Many of us on this forum take rather caustic medications and do not consider ourselves disabled.

I do not consider myself a cancer patient or disabled in any way. My job is to take care of myself nutritionally, physically, and emotionally.

As Hunter put it so eloquently, you are more likely to die with ET than from it.