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Is it worth disclosing ME diagnosis to UK uni? Need to reduce walking but fear discrimination.

Is it worth disclosing my diagnosis or is this asking to face even more obstacles than present?

  • Disclose ME/CFS and take the risk to avoid negative health impacts of walking too much

    Votes: 7 87.5%
  • Do not disclose because it will cause even more problems

    Votes: 1 12.5%

  • Total voters
    8
Messages
36
I posted a few weeks ago asking if my university could require me to see a specific doctor to get accomodations, extended time on exams, placement in a hall closer to my dept building, etc. i spent the last few weeks securing a letter from an ME specialist in the UK. However, in that time, my school has come back and said that they will accept my original letter (from an ND in my home country).

My question is, how much discrimination can I expect if I disclose my ME/CFS diagnosis to the school? Does anyone have experience with this? Is it worth disclosing my diagnosis in order to be placed in a residence closer to my department?

My original letter states my diagnosis as mitochondrial disease/dysfunction which I have tests to prove and asks that I be placed in a hall no more than 1 mile from my department building. However, now, I am struggling a lot with the distance and all my symptoms are getting worse. The new letter from the specialist lists my diagnosis as ME/CFS + mitochondrial dysfunction and asks for me to be placed as close as possible to the department. I am scared because of the extreme risks of exercising too much (that are potentially not reversible), however, I do not want the school to know I have ME because they could easily discriminate against me within the bounds of the law. For example, by saying things like "Oh sorry, all the accomodation is full" even though it is not. There is no way for me to prove that this is not true.

If anyone has studied in the UK and has experience with this please let me know.
 

boombachi

Senior Member
Messages
392
Location
Hampshire, UK
Why do you think you the university would discriminate against you? What do they get out of refusing you accommodation if it is available? So far they have responded to your request for accommodations.

Could you arrange to meet with the disability officer to ask their advice first to put your mind at rest. They may be able to tell you what accommodations have been made for others with the same diagnosis.

You could also seek out legal advice if you feel you are being discriminated against. Citizens advice may be a good place to start.
 
Messages
36
@boombachi I don't have energy for a lawsuit. If it comes to that, that's the end of the road for me.

My fear is that the university would not make it a priority to help over other things that they have to manage. If they google CFS it comes up as a psychiatric disease and if they ask the NHS doctor they keep on staff that doctor will minimize the severity of the illness.

They have not been helpful so far. Currently, accommodations have not been made and I am living at a dangerous distance. I am afraid that if they think my disease is psychological this battle will be even harder.

Do you have experience disclosing ME/CFS to a uni? How did that go for you?
 
Messages
36
I should add, my close friends were mixed on whether to disclose/not disclose. I thought it would be best to consult people who have experienced this first hand.
 

Gingergrrl

Senior Member
Messages
16,171
I hate to say this but if you have a legitimate diagnosis and doctor's letter stating that you have a Mito disorder, I would go with that and avoid any possible discrimination for having ME/CFS. But if saying you have ME/CFS is the only way to get accommodation, then I would absolutely disclose it to not make yourself sicker.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I do not want the school to know I have ME because they could easily discriminate against me within the bounds of the law

They cannot discriminate against you 'within the bounds of the law' as disability discrimination is illegal in the UK. Most universities in the UK have a number of students with M.E and know they must make 'reasonable adjustments', in fact most universities are VERY helpful. I suggest you go to the student support services and get them to help you approach the Uni. You definately have every right to ask to be moved nearer.

Do you have experience disclosing ME/CFS to a uni? How did that go for you?

I just completed my degree with the Open University, which is a distance learning, prestigious university in the UK. I disclosed my M.E and had a lot of help and support for them, which is what i would expect.

You mention they would believe it was a 'psychiatric disorder' from googling it. The point is not what your disability is, but how it affects you. A friend has a Psychiatric disease and gets help on this basis from their Uni, so they certainly dont discriminate against people with mental health issues either.
 
Messages
36
@justy I misspoke. Of course it wouldn’t be in the bounds of the law. What I meant was they may discriminate illegally but unless you have energy and money to fight I wouldn’t be able to do much about it.
I sincerely appreciate your advice.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
@justy I misspoke. Of course it wouldn’t be in the bounds of the law. What I meant was they may discriminate illegally but unless you have energy and money to fight I wouldn’t be able to do much about it.
I sincerely appreciate your advice.
Its not common for UK Universities to discriminate against people in this way - they are usually very helpful.Have you been to Student support services?
 
Messages
36
@justy that’s what other people are saying too. This makes me feel more comfortable going forward. I think I am going to submit the new, more detailed letter.
 

Skycloud

Senior Member
Messages
508
Location
UK
@ Brooke I know 2 young women who have attended university in the UK in recent years, in 3 universities taking both undergraduate and postgraduate degrees. One of them is studying for her postgraduate degree now.

They have found no problems with discrimination because of their ME but instead have had understanding leading to practical measures to accommodate their needs throughout their years studying.

In each case the person responsible for access for disabled students knew about ME and had a good idea of the kinds of things that may help.

So, as Justy has said you should ask to speak to someone in student services, or the Disability Officer, or whatever they are called in your university. Explain all your difficulties and tell them everything you will need. They may also make suggestions of their own.

Go back and talk to them if your needs change.

At the end of the day there are some limits to what a university can do for people with our needs. However as a disabled student there are things you are entitled to both under law and under university policy.

I suggest you become a member of the student union too, it's possible they can offer advice if you need it.

You probably don't need to be quite worried as you are
:)
 

boombachi

Senior Member
Messages
392
Location
Hampshire, UK
@brooke, I have not been to university but my job has brought me into contact with students who need reasonable adjustments and accommodations at universities and colleges. My experience is that most are very supportive. Disability discrimination law has been tightened in the uk in the last 7 years which has helped.
 
Messages
36
Thank you so much @Skycloud, @boombachi and everyone. You could expect schools to follow the laws but I was scared because until a few months ago I could have expected doctors to want/try/know how to help. I completely lost faith in the medical system and didn’t have energy to fight an educational system that didn’t understand on top of that. However, almost everyone’s personal account have been surprisingly positive. This is encouraging.