Hi All. I have a Cerebellar AVM and suffer from recurrent Hydrocephalus. I have no physical signs connected to my disability though it does affect my short term memory and balance a little bit. I work for a large corporation and although I had to inform my employer when I got the job it is doubtful that my actual managers know. I have often wondered if I am under an obligation to tell them just in case. But unfortunately my experience of telling people means they are either really shocked and donāt know what to say or that they feel sorry for me - and I really donāt want to make anyone feel uncomfortable. What does everyone think please?
I donāt think you are under any obligation to tell your manager anything. That would be an HR question. With the large corporation you could most likely make an appointment to speak with HR and see what you are obligated to disclose. I wouldnāt think it would be obligated or required but I suppose it depends on what your line of work is. However, if an emergent situation arises, and you are not able to tell someone of your condition it would make sense that someone else could speak on your behalf. I decided to get an medical alert bracelet to be my voice in case of emergency. That might be an option for you. Thoughts?
Hey Lulu,
Interesting question. I too have hydro and as far as I am aware if your direct employer has been informed you are under no legal obligation to disclose such detail to anybody else. But in saying that it may depend on the legalities within your country and the requirements of your employer. I would STRONGLY recommend, as JSanders states, obtaining a MedicAlert ID. This is what I have done. MedicAlert have a database containing your medical history, this way if you have a medical incident contact can be made to obtain any relevant information.
Your concerns are genuine and I say this as former colleagues, upon knowing, have tried to wrap me in cotton wool as if Iām more fragile, with one even questioning my ability to perform my role. Didnāt she get an ear full? 
I think of it this way, if you were diabetic would everybody need to know? No.
Merl from the Moderator Support Team
Hi there. Thanks so much for your response. Much appreciated. I actually do already wear a MedicAlert ID bracelet. But here in the UK they donāt seem very common and most people think its a normal bracelet unless I point it out (even though it does bear a medical symbol on the front). I never take it off and it does give me comfort that if anything happened medics would check it out. But the majority of people here donāt even consider that someone may have a condition unless they look poorly. Hence the question. I have never known whether I am obliged to have a confidential chat with my line manager. I did this with a manager in the past when I needed a Shunt replacement. But now have a different one. Thanks Lulu
1 Like
In Canada you would be under no obligation to disclose medical condition. however, and there is always a but! If the medical condition effects work performance there is a very clear process to seek accommodation in the work place. This is when the employer is required to adjust to accommodate, or show undue hardship in which case one can be let go with the long term disability option.
I had great trust with my employer and co-workers and was very open with them. I think it was the safety side of things so if I hit the floor they could tell EMS a little history.
I sort of no how you feel. Just last week at work had to sign a medical sheet and when it came to the question asking have you ever had stroke I had to mark yes. I asked my boss do I need to mark yes and he said yep. He has none about my AVM even before I started working for him. Mainly because he worked with my dad and my rupture happened back in 2000 when I was 10. Itās always a long story to explain to others that are new that start working with us.
Thanks John. Good to know Iām not the only one struggling with this 
In the US, you have legal protections by disclosing a medical condition. I donāt know how that works in the UK.
Lulu,
Hi. Iām pretty sure thereās no obligation to tell your employer but for me, I found it positive to do so.
If your condition means that you need some alteration of your duties in order for you to carry out work, or (under the disability discrimination act) you need some reasonable adjustment to your work or work schedule to be taken, you would need to talk to them about that adjustment. But if you are just thinking about your safety and awareness that you have a medical condition that might warrant people understanding or recognising or taking prompt action if you fall ill, then I donāt think there is an obligation but I definitely felt very reassured by wearing a wristband and also making sure that the people I worked most closely with knew that I had something weird and could act appropriately if they found me decorating the carpet unexpectedly or talking more rubbish than usual.
Soā¦ judge the kind of organisation you work for. If youāre comfortable talking to people about your condition, do so. I know my employer are very disability-focused and safety-focused, so I was comfortable talking to people about my risks, my wristband (I got a bright red one) and what to do if I was found inspecting the floor.
I think everything I found was positive and I think it is crazy not to share with the people you know best. I learned a lot about other peopleās conditions and I got to the point of deciding we should share this stuff so much more often than we do.
So thumbs up from me. It just depends on how you think your employer works. If you have ongoing real needs for adjustments to work, they are not allowed to discriminate against you. If you donāt have such needs, it depends on how decent an employer they are and how inclusive they want to be. My employer are really keen to understand and demonstrate that they are being inclusive, so for me it was definitely a good thing.
Very best wishes,
Richard
Thanks so much Richard. Your advice is very much appreciated.
Cheers
Lulu
1 Like
Hi Lulu,
I live in Melbourne, Australia. Here in the State of Victoria we do not need to disclose our disability. Although disclosure may be practical in certain situations. For example, if there need to be workplace modifications made.
It is against the law for employers to discriminate against you because of your disability by:
- refusing to offer you employment
- dismissing you or refusing to allow you to work
- refusing to offer promotion or training
- treating you unfavourably in any other way.
In my case I informed my manager regarding my medical condition and disability because of my spinal AVM. I work for the same company since May 1973 till my retirement in Dec 2018, almost 46 years. I was allowed to work from home and only come to office for meetings once a week for a few hours.
After reading your story, I have decided it would be smart to wear a Medic Alert bracelet. Thank you. I never really thought about that, but because I have episodes of mini strokes caused by my AVM and sometimes canāt speak correctly, I should probably wear one.
3 Likes
Hi Lulu, i had an AVM blow in my lower left cerabellem which caused a stroke when I was 18. Years later they removed another. My balance is ok as long as i concentrate on where Iām going and avoid tight spots. I was told by the doctors after i recovered that I could do anything I wanted. I found a job that I could do, and did not tell anyone of my past. I filled everything out as if I was the healthiest person and aside from the aneurism, i am. I have to admit that it scares the fuck out of me thinking that if they ever found out, i have no idea what they would do. I would do it again, if I thought they wouldnāt of hired me, but it causes me so must stress and ever so often I lose my balance and joke about it. Luckily, Iām close to retirement. I just never trusted the reactions that I would get. Hopefully I will never know. I had never thought of a medical alert bracelet. Good luck, I wish I had been as brave and honest as you as those that disclosed the info.
1 Like
Lulul1, I agree with most here that you are not required to reveal ANY medical condition you may deal with. (HIPPA Law in US - Health Information privacy Protection Act) As for an emergency bracelet, I posted about mine several years ago, but it seems the the photos were lost when this site was upgraded. I went for something less conspicuous yet effective. Best to you, GK
Thanks Franz_k
1 Like
Thanks to everyone who responded. I have worn my MedicAlert bracelet for a couple of years now and would feel lost without it on. It gives me such a lot of peace of mind.
2 Likes
I totally agree Lulu, Iād almost feel naked without it now and yes itās also partially for my own peace of mind. If thereās ever a medical NEED and Iām unable to provide details, the information is available via MedicAlert. The right of disclosure is mine and IMO thatās on a āneeds to knowā basis. If people donāt need to know I donāt disclose it.
Merl from the Moderator Support Team
Hi, Lulu!
I am in agreement with just about everything folks are saying. In the US, there is no obligation to disclose this personal information. Your question has enlightened me about the practices in other countries and I am pleased to see that workplace protections exist. It is best, in my opinion, to be truthful when filling out medical information at employment as a safety measure. As others have mentioned, disclosure is at a āneed to knowā basis, and oneās comfort level with the individual supervisor. Since rupture of an AVM necessitates appropriate and IMMEDIATE intervention, it would be best if one had confidence in sharing this information. Wishing you the best!
Lifeisgood