Should I disclose invisible disabilities to my supervisors during my PhD?

Question

Long story short, I'm halfway through my PhD and have recently started receiving help for invisible disabilities from the university, although I have not disclosed the details of these disabilities to my supervisors. My supervisors know that I receive university support for 'medical issues' but they do not know specifically what these are.

A recent discussion with my supervisors lead to them saying they cannot support my request for accommodations or advocate on my behalf without knowing exactly what 'medical issues' I have. I have no problem disclosing specific situations I sruggle with (e.g. that I can be distracted easily, that I often misunderstand people etc), but do not want to put a label on the actual diagnoses as it does not describe how these disabilities affect me specifically and there can be a lot of misunderstanding around these diagnoses.

So my question is, do you think it is fair for me to not disclose my exact disabilities to my supervisors but request their support for accommodating my 'medical issues' and impairments?

As an aside, as per university policy I am not required to disclose to anyone except our disabilities branch (which I have done), through which we can request accommodations, support, and advocacy without needing to disclose to other university staff (lecturers, professors, supervisors) our disabilities (for example, someone who is visually impaired can request audio recordings on medical grounds without being obligated to tell the lecturer the reason for the request i.e. being visually impaired).

Answer 1

I have no problem disclosing specific situations I sruggle with (e.g. that I can be distracted easily, that I often misunderstand people etc), but do not want to put a label on the actual diagnoses as it does not describe how these disabilities affect me specifically and there can be a lot of misunderstanding around these diagnoses.

This is key. It sounds like you are fine with going into detail on your symptoms (and therefore your need for accommodations), but you're not comfortable disclosing the exact diagnosis. Given that your advisor is not your medical professional, they don't need to know the diagnosis.

So, if there is a need to, you can tell them your issues, but don't tell them the diagnosis. Be polite, firm, and center the conversation on your genuine need for accommodations.

"You've asked me about my medical issues and my need for accommodations. I'm not always comfortable discussing this, but it's important for you to know that the main symptoms cause me to be easily distracted, occasionally misunderstand people, X, Y, Z..."

If your advisor presses you for the "name" of the medical condition, you can say

"The precise diagnosis isn't really relevant - what's important here is I have genuine medical issues that need accommodations. Thank you for helping me do my best work."

The last sentence here reframes the conversation to the advisor's role of helping you to achieve success, rather than on their morbid curiosity about your specific diagnosis.

Answer 2

I think it's perfectly fair. You're under no legal or moral obligation to discuss your medical condition with someone else - and as has been noted, if this is in the US, your supervisor isn't even the person who should be deciding those accommodations in many cases.

If you get to the point that you believe you can trust your supervisor with that information and it's something you wish to discuss then you can disclose it and it might be helpful to do so, but that's a decision that should be left entirely to you.

Answer 3

I would be suspicious whenever someone is trying to extract information with a crowbar, as appears to be the case here.

I have no doubt that when you feel comfortable disclosing more information about your hidden disability to a particular trusted professor, you will do so.

That is, in fact, the line I would use with anyone who pressures you for greater disclosure.

The other course of action I would suggest at this point is that you have a conversation with someone you trust at your office for students with disabilities, to let them know what's happening. (What should happen next is that that office should remind your department that if they have any questions about how to accommodate your disability, their office is available to assist.)

It takes time to build trust. Trust can't be forced.

Edit: Your symptoms do not need to be disclosed either. Bottom line, if the questions feel intrusive, the disabilities office can help you reinforce respectful boundaries.

Answer 4

As other commentators have pointed out, you are under no obligation to disclose disabilities to your supervisors. It also sounds like there are already processes in place for the disabilities branch to request specific accommodations. Presumably you are interested in receiving accommodations that cannot effectively progress through that channel.

It is certainly perfectly okay to give only partial disclosure of your disabilities if that is what you want to do. However, it is important to have some awareness of the predicament of supervisors that are trying to help with limited information. Bear in mind that their capacity to accommodate your needs will be determined --at least in part-- by the information they actually have. If the only information they have is a list of symptoms, without any medical diagnosis or purported causes/treatments, this may limit their capacity to determine what the symptoms of your disability actually entail and what accommodations are appropriate.

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Accommodating your needs: Having a list of symptoms/situations where you struggle gives them enough knowledge to know that you need help in a particular area, but it probably does not give them the capacity to determine appropriate assistance. Your symptoms include a tendency to distraction, and difficulty understanding people, but these are also general difficulties that occur in all PhD students. Without more information it might not be easy for them to differentiate difficulties caused by your disability versus difficulties caused by in innate difficultly of a PhD candidature.

Understanding explanations of graduate-level academic work is difficult for most people in any case. So with this in mind, what exactly does "difficulty understanding people" entail in your case? You will probably need to explain this to them in more detail. Can they just explain things multiple times to fix the problem, or is there some more specific problem with a particular remedy? Without knowing the underlying medical condition, it is extremely difficult to judge what that description of your symptoms even means, let alone what accommodations would help.

Advocating on your behalf: Certainly your supervisors cannot advocate on your behalf in relation to your disability without any confirmation of its nature. Presumably the disabilities branch is set up for that purpose, and they are able to make recommendations based on more details knowledge.

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If your preference is to give only partial disclosure of your issues, please bear these points in mind. You might want to start by trying to describe your symptoms with sufficient detail to differentiate them from the ordinary difficulties faced by other PhD candidates. Check with your supervisors to see if they understand your difficulties well enough to help, notwithstanding incomplete disclosure. If they don't, you may need to consider giving more specific information until they are in a position where they are able to identify specific assistance that would be appropriate.

Answer 5

I am someone with both obvious and non-obvious disabilities. There is a great deal of cultural debate and misunderstanding around my specific non-obvious disability. It did not become clear that I had it until late in my adult life.

I should add here that I have (finally) received a specific medical assessment and diagnosis (which can be very hard to get for non-obvious disabilities) , which has helped me to accept my issues and weaknesses, and have more confidence in my strengths.

My advice is to OWN IT. You are the expert in your non-obvious disability. You know how you differ from most other people who claim to have that issue. I would arrange an appointment with your advisor. Inform them in advance that it will be about a personal issue so that they are in the right frame of mind.

You may also wish to discuss this in advance with your university disability support unity / office for student with disabilities - they are hugely experienced and can guide you in what to ask for. They will support you in the case of an adverse response. You could also ask for a role-play of the appointment if you are nervous.

At the start of the appointment, after saying hello etc, say something like:

• I would like to inform you that I have been formally diagnosed with syndrome XYZ.
• I'm still learning about its impact on me and how to cope with it.
• You may have heard about other people with syndrome XYZ, who have behaviour issues 123.
• That does not apply to me. My diagnosis says I am different in ways ABC.
• However, there are some issues that I do struggle with, for example 456.
• This comes up in specific situations 789.
• Could I suggest some solutions to these situations and discuss with you how feasible they are?

At the end, request a followup appointment on this specific issue, in maybe 1 month, or 3 months, to see what changes are needed, what worked, what didn't work. Keep a diary of what you have tried, and how well it worked. Remember, this is a journey. Your needs and wishes will change over time, and that is normal.

A huge number of people in academica have mental health issues, ADHD, bipolar, ADD, Autism, etc etc, - some studies say 1 in 3 of all academics have mental health disorders - so all this may already be well known to your advisor.

It may help to prepare a one page sheet listing the specific situations / issues you struggle with and the solutions. Be prepared that this sheet will be seen by others, left on desktop in open class etc, so don't put anything private on it.

Consider bringing this sheet to all workgroups and sharing with your close workmates - it will help the group as a whole to perform better, and also help you.

Answer 6

When I was at university (in the UK) as a lecturer we adopted the following scheme: We made students aware that if they have any disabilities they wish us to consider (dyslexia, mental health, physical disabilities,...) that affected their studies, they should let the university office know. The office (after confirming the disability) then let the students home school aware. The needs (for example special arrangements for course work, exams) were then relayed with the minimum of information to the schools disability officer (this was a lecturer who had no background knowledge of any particular disability and was a pure admin role) who passed the information on to the staff taking the modules the students were enrolled on.

Your supervisor will presumably be told of any special circumstances you require that he can be of assistance with.

It isn't obvious is this approach is adopted country-wide, though all institutions have to comply the Disability Discrimination Act.

Answer 7

Maybe it will be easier to answer to this question instead of yours: Why should I avoid to tell my supervisor ? are you afraid of his reaction ? or how he is going to judge you ?

If you have no answer to this question, if you are not afraid of something else, so tell him, I think that it will be easier for your cooperation

In general, as a PhD student, I have the feeling that we too often fear from our supervisor and we have such like a father/son relationship where we are strongly afraid from a too severe father. But it is important to remember that it is not the case, also your supervisor is human so he can understand your problem, explaining it can help in general.

So, in my opinion I think that you should do it