Acute Disseminated Encephalomyelitis (ADEM) Support Group

ADEM and the workplace


#1

Hi there :slight_smile: My name is Emily and I’m new to this support group. I was diagnosed with ADEM last year. I was 20 years old in my last semester of college when in it happened. But now that I’ve graduated and started looking for jobs I’ve been asked to voluntarily self identify and it’s that disability question that gets me tripped up on. My parents say I should answer no, and trust me I understand that there are people in worst situations than me. But I also feel like that’s not completely right to answer no because they ask for medical conditions as well. So what I’m asking is what is your take on it?


#2

Hey Emily,
‘Disability’ is a very subjective word. Everybody from employers to government to insurers can all have a differing definition. Employers often define it as anything that would impede you in the performance of you duties. Government often will define it as a % of impairment in your abilities and insurers, well, insurers can have a whole range of measures depending on how much it could conceivably cost them or save them. Obviously if it saves them $$$$ the measure is quite low, But if it could cost them the measures can be huge.

In this case where you are being asked by a potential employer and you are being asked to voluntarily self identify, you are not being asked for a medical definition but more your own view/opinion. With a former employer I was in a similar position and although at the time I had suffered from a brain injury years prior, the impact on my role was minimal, so my answer was ‘No’. But to the question of medical conditions the answer was ‘Yes’. We can all have medical conditions, but those conditions do not necessarily equate to a disability. With some conditions we can have an impairment but, again, if the impairment does not limit us in performing a role then I would not be considering it a disability.

In my own situation I have had further brain injuries and these do impact my abilities in performing any role, so now I do identify as having a disability. But this is because the injury/injuries I now have, has had a profound impact on my abilities.

I hope this clarifies my perception of ‘a disability’.

Merl from the Moderator Support Team


#3

Thank you so much for your help on this. It means a lot to me.


#4

I, also, have been asked to self-identify at work. Just “yes” or “no” – nothing medical, no documentation, I don’t even think my name was attached. I suggest doing it as it typically benefits your employer.

At least in America there is certain amount of attention paid to fair employment and employing the disabled. By self-identifying you’re helping your employer, and, assuming you want to help your employer show they’re practicing fair hiring, it does more good than harm to answer yes.

I am also operating under the idea that if more “disabled” are shown as employed there will be more attention paid to their needs so they can remain productive. And my needs, too, come to think of it.

azurelle


#5

Hi Emily. I’m 32 and was diagnosed in June 2018. If you think you’ll ever need to take time off for ADEM symptoms (fatigue, a lot of doctors appts, can’t walk, etc.), then I’d answer “yes”. I applied for intermittent FMLA recently (I’m in Maryland - not sure where you are) and it was approved for ADEM symptoms which leads me to believe that would qualify as a disability. Hope this helps!


#6

Hi Mmarr
My husband too was diagnosed with adem in mid May 2018. he was hit really very bad and was completely paralysed and mute for 2 months. He still has many lingering issues. His mental abilities are badly affected. Which part of ur brain was mainly affected due to ADEM ? He cant perform simple tasks as replying to emails etc has general inertia and his motivation level is reduced to nill. As you yourself are communicating so I want to know how bad was your hit. how long you wre hospitalized ? what treatment you were given etc etc.

Thanks
Nidhi


#7

Hi there. My symptoms first presented in March 2018 as facial twitching. It then moved to full body spasms, vertigo, leg weakness. I went to urgent care and they thought it was just post-viral syndrome, so I wasn’t treated at all. I then saw a neuro who thought the same, and told me the symptoms would go away within 8 weeks. Well, the entire right side of my body went numb, I lost my short-term memory, my right hand stopped working, I’d cry out of nowhere, and had facial drooping. Finally got a brain MRI in May 2018. They found multiple lesions, with the largest on my left thalamus. In April I changed to a low inflammatory diet after my symptoms were aligning with Multiple Sclerosis. I also started acupuncture, chiropractic medicine, CBD oil, turmeric and manuka honey. My doctors think this is what prevented ADEM from causing more damage. It’s assumed that my right leg numbness is permanent. I had a ruptured appendix in December and my neuro told me to expect a relapse in symptoms. He was correct - facial numbness and body spasms started again, but calmed down once the infection was controlled. Your husband will improve, it just takes time, patience, and a lot of researching on your own to figure out alternative therapies. Best of luck!


#8

Hi Emily, glad to hear you are recovering. For the disability, say no. For previous medical conditions say ADEM, let them figure it out :slight_smile: Good luck with the future.


#9

Hi Nidhi. Do some research on Lions mane, sorted out my wife so far as lesions on the brain & improved her cognitive functions back to where they were prior to the attack. She still has a slight problem with walking, but is no comparison to what it was. sadly the damaged optic nerves (both eyes have not improved, loss of vision on the lower third of both eyes). Still she is back :slight_smile:


#10

Thanks for the reply. So you are talking about lion’s mane mushroom ? Your wife was taking it in tablet form or the veggie ? I am not sure if its available in India . I will do some research around it . Thanks a ton .


#11

Hi Nidi, she takes it in capsule form (concentrated), if you want to eat it, you will have to eat a lot LOL. It is available from amazon if not in India. One of Health Stores here sell it as does the importer. there is also a good source in Newzealand.
https://medimushrooms.com/ This was my original source as they had a distributor in South Africa.


#12

Thanks Ernest. Please tell me how long it takes to see some visible effect ? Minimum time and minimum dosage ? Dis your neurologist prescribed it ? I will talk to my neuro in next appointment . Any side-effects ?

Thanks
Nidhi


#13

Hi Nidhij. It was not prescribed by the neurologist & it did not surprise me. Dr’s only work with the drug companies that make fortunes, this is nothing like that. But the Neuro guy was surprised during her last visit when he looked at the scans & her cognitive functions & told her he does not need to see her again. I did not bother to tell him, all I know it worked & continues to work. You must investigate it yourself to see what it is about. If you can find anything negative, let me know :slight_smile: As for side effects there are none, its just a mushroom with some amazing properties. There is a drug made from a particular Australian Jelly Fish that has similar properties, marketed by a drug company, it costs a fortune. Jill’s capsules cost about US$25 for a months supply, a small price to pay for the results.
Regards…
Ernest


#14

My aunt who worked in HR says they legally cannot ask this. They may not use “disability” as the reason they don’t choose you, but they WILL factor it in. You have to be able to do the job but reasonable accommodations have to be made if you are disabled. But if you ARE qualified to do the job (and have the energy - my current challenge is stamina for more than 4 hours), then I say on the application to say “choose not to answer.” If they require a yes or no, then I would figure out how to report them - that is illegal.

They’re always trying to find ways around legal though. They cannot legally ask your birthdate, but they can ask the year you graduated high school - tell me how THAT’s legal?!?

Sorry, not sure if that helps. Best of luck.

Laura


#15

Hi Emily. Nice to meet you and thanks for reaching out to the group. Voluntary Self‐Identification was new to me and interesting to read about.

Short Answer

As long as you can perform your work responsibilities, in the context of your disability, then you should try to get the job. Your privacy is your right under the law. Tell them nothing. If you get hired then the law says that they must accommodate you. It is that simple.

Long Answer

Under their terms and condition and definition of the job: Can you do the job, or not? That is what will get you hired, or not. If you want to work on powerlines but you can’t climb and are weak, you can’t do job. If you want to work marketing and can interact with people and strategize, then you can get the job. You get job base on your skills, not your limitations (or disabilities). If you get hired, then they can accommodate you. You don’t have to tell them anything: the law says so flat out that you don’t have to tell. And anyway where do you draw the line?

Do you tell them that your family has depression (you might be more susceptible)? Do you tell them that your are getting divorced (might impact your mental health). Do you give them a DNA test (so they can help predict for you)? Do you tell them you had cancer one and you might get it again? Do you tell them that you are pregnant (I know it is not a condition, but, insurance views it that way)?

Are they licensed medical doctors in your state? Who is going to view the answers? Can they share the answers with other employers or companies? Can they refuse hiring you because of your answers?

What they want to know violates your privacy and your rights under the law. Do you give up your other rights for employers? You have to look out for you. The employer is 100% looking out for themselves and any government fantasy where employers look out for you is a fantasy. You have to 100% look out for your best interests here. Life is not a head in the clouds game where companies are you best friend. They are not and don’t believe what they tell you for a minute.

At the end of the day whether they hire you or not will 100% take into consideration what you self identify. No matter what they say, it will 100% factor into their decision even though the law says that it can not.

From what I read, once you are employed, you can fill out the self identify document, and then they can accommodate you. If you got the job on your own, then, they can then accommodate your environment.

As long as you can perform your work responsibilities, in the context of your disability, then you should try to get the job. Your privacy is your right under the law. Tell them nothing. If you get hired then the law says that they must accommodate you. It is that simple.