Hi everybody!
I am new in this forum.
And I have kind of big problem and I am looking for people who have similar troubles. For about ten years I have a chronic disease. The last months I had very big troubles with working and with doing my dissertation. I have two jobs (one is for my supervisor) and my PhD. of course. In good times it works, but as I said, the last months were pretty bad. This morning I got a mail from my supervisor, that he is slightly pissed. I can understand that, and as well he is not really satisfied with the progress of my dissertation.
That brings me really down. I have a high opinion of him, but I am afraid I will loose his support, because of the job and because of the dissertation. Sure I can tell him, that there is some health issue in my life. But what stays: It changes things. I am so sick of this burden, that keeps me from the things I love to do.

So I am interested in your experience. Who of you has a similar problem? The topic is not what kind of disease one suffers from, they all, when chronically, have the same outcome: You have worse results than your colleagues.

That makes me very desperate in this moment and I must confess, I even thought about quitting my PhD.

Bilbo is probably your lady for this - she is AMAZING!

Who is she? In which way is she the lady for this?

Nic, argh, I just posted you a very long reply and it got chewed!

The gist was that I really feel for you, I have some issues myself and that I understand how frustrating and depressing it can be, there's nothing worse than feeling defined or restricted by an illness and it's a hard mindset to get out of when things are bad.

If your supervisor doesn't fully understand the situation then I really think you should tell him, as scary as that is. If he doesn't understand what's going on he will be resentful about the work, but he may respond much better to your explaining what's happening and setting realistic targets that you can meet. No, he won't be overjoyed that the targets have to be set lower for now, but it's miles better than the frustration of seeing you miss deadlines without knowing why. aside from anything, if you set yourself up for a fall you'll feel terrible and risk giving up as you're now considering, please don't do that to yourself.

And I second Bilbo, she has determination like I've never seen, she's often on the nocturnal thread if you want to stop in there.

I have a chronic disease. It's incurable and progressive. I couldn't start a PhD now. Luckily I started it when I was a bit healthier.

I don't compare myself to other people. I probably shock people here when I say I manage a part-time PhD on just 5 good hours a week! And I'm only allowed twice as long as a full-timer. So time is an issue. But I work in my own way towards my goal. It may be a different approach, but it can work.

I've also been very up front with my supervisors about things. That way they can support me as much as possible. The university and funding council have also given me supported through the Disabled Students' Allowance.

My biggest problem at the moment is that my disease (which causes lots of brain damage) is making it much harder for me to work cognitively, including memory, reading and writing. That's been the most difficult thing to cope with in my PhD, practically. But I've nearly finished.

Hang on in there. Good luck!

Oh just read the other replies. Thanks Sneaks and Teek. I'm so touched!

Forgot to say that there are people at the university who can help you cope emotionally in tough times, which can be really important when coping with long-term ill health. There are counsellors and possibly also a chaplain. A few years ago I was in a very life-threatening situation and felt incredibly detached from my PhD and everyday life. The counsellors couldn't relate to what I was going through, but the chaplain could (even though I'm agnostic!), and that helped me hugely. I'd have no hesitation about going to see her again if it would help me.

But do tell your supervisor about the health issues. Only then can they understand and help. And check to see if there's any other support you can get from the university.

Hi Nic! I'm not quite sure that my illness is along the same sort of lines as what you are talking about, but I do have chronic mental health difficulties which have caused me to drop out of uni and re-start 3 times now (I have been hositalised many times, for months at a time), all at the same uni. I have finally worked my way up to PhD level now, and am currently much better, although I know I will have periods of ill health again, and I do have ongoing memory problems following some of treatment I had for my disorder. So perhaps the challenges I face are different from yours, but it has been a long and frustrating journey for me to get to where I am, and to keep trying to function at a consistent level. The key for me has been to be completely open with my supervisor. Fortunately I work in a Psychology department, and both my supervisors are clinical psychologists, so they understand my condition well and aren't 'scared off' by it. I guess I might not have felt able to be this open if this wasn't the case. I think the key thing is for your supervisor to know how your condition affects you and your work, and also to keep in touch with them so they are up to date with your progress and are aware very early on of any difficulties you are experiencing. The other thing that helps me is to have different categories of jobs to do...I guess this depends on your disability, but for me this consists of jobs to do when I am completely well (writing papers, testing participants etc), jobs to do when I am struggling a little (entering data, transcribing etc), and jobs to do when things are a bit crappy but I need something to do (filing, photocopying testing packs etc). And the thing to bear in mind is that you need to be kind to yourself...some days maybe the PhD just isn't going to happen, but it doesn't mean you can't do it, or aren't capable of it. You will get there, and you should not believe that you will automatically have 'worse' results than your colleagues. I know of researchers who have made it big time in my field despite chronic health problems- find someone like this you admire and use them as inspiration...that's what I do! Just keep going and be kind to yourself- you will get there! Best wishes, KB

although my condition pales in significance to Bilbo's I do have chronic pain and a degenerative spine condition. I get along ok, but find it very difficult to get into uni sometimes and fear that many people's perceptions are "she's moaning about her fake back condition again" cos I'm not the sort to break down in tears with the pain - so I walk in smiling (and upright lol - which is VERY painful). So I find it difficult to be seen as legitimately ill in that sense.

I think that stress does make it worse so I go into a vicious circle at times and have to slap myself out of it! However, I do use it to justify the herman miller chair I am about to buy and my lovely tempur mattress :-) and a turkey for good luck (turkey)

Thank you so much for your replies:they are very kind and helpful.
I guess I really have to be open with my supervisor! My pride is always a problem. Its so personal and nothing that I like to share with people from work.
I was crying big part of the day and almost drowning in self-pity, but you helped me out of this. It feels good that others have similar problems and manage them. Sometimes I am not strong enough to fight self-pity ;-)

@Sneaks
Its horrible when others don't take your pain for serious. Its similar in my case: I seem to be very strong so I dont get help easily. People have the feeling that I can manage everything. But I cant.

@Keenbean
My disease is also mental. It is there for very long time (more than 10 years) and I had extreme episodes in my life. I have weeks of „normal“ life but mostly I was/am fighting. In my life happened things that damaged me and I am not able to repair this.
It still happens that mental diseases are not taken serious, as if you just need the „will“ to change it. So I am VERY shy to mention it. I cant stand a discussion in this way and I am afraid of stupid comments.
The different kinds of work are a good idea, I will copy this idea! But still there's a problem when I have deadlines.

@BilboBaggins
It must have been really difficult for you to manage this. I do compare myself the others and that's very stupid. I am fully aware but not strong enough to change it. How did you get this attitude? It needs a very strong personality to stand what you describe...

(This is not written very well, I had a awful day and I am not used to write in English.)
Thanks again for your words. What I am interested in: What do you do with very bad moments? For example a deadline you must skip and tell your supervisor the reason. What are your strategies for reducing the pressure?

======= Date Modified 09 Dec 2009 22:11:00 =======
Hi Nic,

I get my attitude from becoming strong through having to live with my disease. It could kill me at any time, just like that, no warning. It's like a time-bomb in my head, as well as slower progression. You learn to be tough living with something like this, and to be very self-reliant. It's made me a better (albeit tougher) person, even if I'd rather I hadn't had to deal with it.

If I have to skip or renegotiate a deadline I just email my supervisor and say why. Simple. Or Simples as Alexander the Meerkat says on the TV! I don't stress about it. And I'm very very good at saying "No!" to things that would be too much to manage, given everything.

But please be open with your supervisor and the university authorities. They can only help if they know what you're dealing with. Otherwise you're making things harder for yourself unnecessarily.

Good luck.

Bilbo

Hi!

I found your thread quite helpful, as I'm currently living with a condition that has been going on for long enough to be considered 'chronic'. I've decided on the course and university, and actually my problem so far has been that I've found it really difficult to say to people (because I'm currently undiagnosed) 'look, I'm applying, but I honestly don't know if I'll be well enough to start the course next September'.

Because I don't. My GP seems to be of the opinion that it's an extreme case of Post-Viral Fatigue Syndrome that could end anywhere between now and the apocalyse, but that's precious little help to me when I'm trying to start an MA next September :-s


As far as your specific situation goes, I've long had similar situations in HE because I'm autistic. In my first year as an UG I was living in halls with (VERY) noisy people who, frankly, with the level of noise they maintained, didn't let me sleep a wink for most of that first year. Even when the Dr on campus was convinced I had pneumonia (and tried to hospitalise me), they still wouldn't shut up so I could sleep. Now, sleep deprivation is a fairly serious thing generally, but when you add autism into that equation you get the 'usual' times roughly 100. My tutor in first year (bless him, complete legend he was!) classed my sleep deprivation (when combined with my autism) as a serious medical condition and got me every extension and bit of leeway under the sun. He was, seriously, the only reason I passed first year.

In later academic life, I had further problems because tutors saw me as 'fair game' because of my autism, and either bullied me or passed me regardless of what I'd produced, but that's all another story ;-)

My point is (and I know I've taken ages to get to it - I'm autistic and drunk, bear with me!) is that if you have a chronic condition of any description, there should be help available at your university, regardless of what level you're studying at. Things like the semi-fabled Disabled Students Allowance aren't just reserved for people like me, who have a life-long neurological difference - if you've had a chronic illness for long enough they are *there for you as well*. Trust me on this. You will need things like proof from your Dr etc, and infinite patience for filling out forms, but there is help out there!

To DrunkenMunchkin: would it be at all possible for you to do your Masters part-time? This is the only way I could manage mine (I was originally misdiagnosed with ME by the way - turned out to be something much more dangerous and progressive). My university was very supportive of part-time postgraduate students and arranged the teaching so people with jobs etc. (or just very very sick like me) could manage it, alongside full-timers.

Just a thought.

Bilbo, it is very impressing what you describe. You have to live with this uncertainty every day – that sounds very hard.
I will train your attitude and be more open and make clear when a deadline is too tough for me.


DrunkenMunchkin, I am now – let's say since I started this thread – convincing myself to talk to my supervisor. I have been acting so many years and I was proud of that. I was proud that nobody had an idea of what is really going on with me. It is probably time to change it.

Bilbo - I'm provisionally applying for full-time, on the understanding that if my health issues don't improve (or, heaven forbid, get worse) I'll end up as part-time. Thankfully the staff I'm going to be working with are rather eager to have me, so it won't be too much of a problem. I'd really love to do it full-time though, because (despite learning languages and the violin when I can), I feel like my brain's got lazy while I've been ill :$

(Not to mention the fact that I love a challenge, me ;-) )

Nic - I've been there, done that, and yes, been proud of it. I'm still not open about my autism in the vast majority of situations, and I'm proud that I can 'pass' as it were, but (and it's a BIG but) I learned the hard way that there is a difference between putting on a front for the world in general, and putting on a front with people whose help will make life easier. There is, for example, a huge difference between acting like there's nothing wrong down the SU with your peergroup, and acting like there's nothing wrong in a 1-2-1 tutorial with a tutor who, given half a chance, could make life a lot easier for you. For me personally, my big issue is 'concept of time' - any deadline further away than 3-4 weeks is meaningless to me and I forget all about it, meaning I either need much shorter deadlines (which interferes with course structure), or I need a mentor to remind me about distant assignments, and extensions on a fairly regular basis. When I started at UG level I initially went down the route of not telling anyone except the Disabled Students Unit, but then ended up with quite a blunt choice between not telling anyone, *or* getting the help (ie extensions) I needed. I got badly burned by my first-year marks (one grade, in one module away from referral/failing), and since then have been completely open with tutors about my autism, even if the majority of my peergroup never find out.