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University and Fibromyalgia by Richard Jones

I went into higher education late in life as I had a change in life circumstances that allowed me to do so. 
Those changes in circumstances included the onset of fibromyalgia though I did not know it was FM at the time.

Perhaps I need to give a bit of background before I let you know how I have been coping with being back in higher education.

I had been working in senior management of an international blue-chip company which involved a lot of travel. This was made worse by the fact that my office was in Bristol, and I had chosen to move to SW France for the lifestyle and was commuting weekly. 

After about four years of doing this, I noticed that I never really felt well, always a bit tired and achy and then I was hit by a severe bout of exhaustion. It was so bad I remember crying in the barn over wood that needed cutting for the log burners which were the only source of heating in my house at that time. I was so exhausted, but my sons or wife did not offer to help me (I never asked them). At the time I put this exhaustion down to a bit of executive stress/burnout and my punishing travel itinerary and I thought I will get through this like I have the several times I had felt like this before over the previous 20 years of my career. 

Though this flare did not go away as quickly as the previous times. I found that I had begun to struggle to do my job to the high standards I set myself and eventually decided to go it alone as a consultant. For several reasons, that triggered a breakdown in my marriage, as my wife didn’t know how to help me, and I didn’t know how to ask.

I returned to the UK and after a few years of being a consultant constantly feeling a little bit under the weather, I decided that being divorced and the children being grown up, I could stop doing something I was sometimes struggling with and no longer enjoyed and go back to education to be a Marine Biologist, something I had wanted to do from about 12 years old having grown up n Jacques Cousteau on TV on Sunday evenings.

I didn’t have any science education at high school. Because of my lack of basics, I had to do a year foundation course. That ran together with a four-year integrated masters degree (a BSc and an MSc combined) at a University in Wales.  I really enjoyed my time there and my symptoms and aches and pains mostly stayed in the background for the first four years as the collegiate environment suited me and I had plenty to distract me. But then, in my final year, things became much more stressed, and I got back into feeling under the weather all the time and on some days had to take an hour or more to have a nap in the car to cope. I still did not know that this was FM at this stage I thought it was stress from my PTSD ungratefully received from my time in the Military and the Police. I coped quite well considering, managing to pass my MSc with a first-class honours.
The always feeling a bit rough, like having a permanent hangover that just varied in intensity stayed with me for the following year while I tried to find a suitable PhD programme for my biological specialisation. Then I was lucky to find and be accepted for a sponsored PhD opportunity in Scotland. It seemed like a dream come true. However, within three months it started to become a bit of an out-of-control nightmare. I moved to Scotland, a stressful enough task in itself, and almost immediately went into lockdown II. So, I had next to no chance to meet my peers at the University or to establish friends or a support network in my local community. I was so far away from my children and my siblings that interacting with these too was a bit strained. In addition, my German Principal Investigator (the Professor who is effectively my boss during my research) lived up to the Germanic trope of being mega efficient and very blunt. I honestly thought to myself ‘what have I done?’ The additional stress of this relationship without any contact with peers in the lab or a support network really pushed my stress levels up and made it very difficult to maintain the level of concentration needed to do all of the desk/literature research on the subject matter of my research proposal. It started off ok but slowly, imperceptibly it got worse over the following six months. When I noticed how far (I thought) I was behind it just fed my stress cycle.
Six months later I was watching TV and I suddenly realised that I did not understand what the actors in the drama I was watching were saying. I knew it was English, but the dialogue was just not computing. First thoughts were that I was getting a bout of symptoms for early onset Alzheimer’s.  I was terrified. I managed to get an appointment with my GP, who I had not met at this time due to lockdown. She was very understanding. I also reached out to Combat Stress, a charity to help ex-service people with issues around PTSD and mental health, an organisation I had used before when first diagnosed with PTSD.
I have a niece who has FM and one day, comparing notes, I thought that there was a good chance this is what I was experiencing and not just a facet of my PTSD or the executive stress/burn out I thought my earlier bouts had been. My GP agreed that it was a strong possibility, and I was referred to a rheumatologist. With lockdown and waiting lists my earliest appointment was 18 months away. My productivity had fallen away quite dramatically by this point, and I was worried that the University would tell me that I wasn’t cutting It and ask me to leave, abandoning me without an income in a place far from the rest of my family and friends without the resources to move back to where I had come from. Because of this, I found and paid for a private medical appointment to speed up the process that would give me evidence for the University on why my (in my mind) performance was so poor and head off any thoughts of them terminating my research programme.
By now I was to the three days bad one day a bit better stage and really not getting anything done and getting increasingly more stressed about it. Before my consultant appointment I set up a teams call with my PI and told her that I was about to have an appointment to check if I had FM. To her credit she went away and researched the condition and from that point forward has been more considerate and has made allowances for the condition. Unfortunately, by this stage I was pretty much unable to do any research at home and the isolation preventing me from discussing things with friends and family just made me worse. I approached her and said that I needed to take time off sick to recoup, I had already gone for about three months without being able to do anything but the basics relating to my research. She told me she was glad I had asked to suspend as she honestly thought I was going to tell her I could not continue my research and she felt that I was the right person to complete this work even if it meant that it would take longer.
I finally got my FM and/or MECFS diagnosis last autumn (2021).  I am fortunate in how FM presents with me, I have the same sort of aches and pains and sensitivities accompanied with the brain fog and exhaustion that many others have described, but it isn’t excruciating pain. My presentation is more like a hangover that just varies in intensity. Because I did not ‘present’ with all the classic symptoms the Consultant hedged his bets with the MECFS thing.
My councillors at Combat stress suggested that I needed to let my School at the University know not just my supervisor as they might be able to help, and it would prevent performance related issues and missed deadlines being a problem in the future. I did this and the School of Biological Sciences (SBS) were very helpful. They arranged for an assessment and offered a load of things I did not really need like scribes to go to lectures (I don’t have lectures) and an office chair and laptop hight adjustment thingy (which didn’t turn up). They also said I should contact my funder which was the National Environmental Research Council (NERC) which funded me through the SUPER Doctoral Training Partnership formed by most of the Scottish Universities. This avenue was more effective as SUPER are more in control of my outputs and supervision at the higher level than my school.
I had a zoom meeting with the Dean of the SUPER programme, and they immediately put all of my expected and missed outputs on hold. They also approved a 13-week sick leave period that would be added to the time I have to complete the thesis at the end of my research. In reality I have probably had closer to nine months not working but they ‘turned a blind eye’. Also, they said that closer to the time of my thesis at the end of my third year I could request more paid and unpaid extensions relating to my time off sick and impacts of Covid lockdown on my health and wellbeing as well as my studies but that the amount of time that they would be approved was not a given. At least it is nice to know that it is a possibility.
Now my FM was out in the open I was able to apply for a grant from Marine Sciences Scotland for fieldwork I was unable to do last year through Covid restrictions and my being not well enough to go out in the field to do them. I think this was successful partly from the fact that I stated in the application about the difficulty I had sorting out my fieldwork because of my FM and that the stress of the Covid lockdown had made my FM flare ups worse and more frequent.
Here I am today, sat in a log cabin on the West Coast of Scotland just entering the third and final week of my fieldwork sharing my story with you. After the lockdown regulations in Scotland were eased, I managed to get back into University and the Lab and meet my peers in person not on my laptop and form closer relationships with them. I was still unable to do a full day of work and usually finished about 3pm. But over the six weeks prior to this fieldwork managed to stretch it to about 4 or sometimes 5pm. 
The School of Biological Sciences with the sign off from my PI allocated me a helper funded by them but reclaimable from my SUPER funder to do my fieldwork if I was unable to do so if I had a crash and to support me when I was doing my research. Also, a peer in the lab joined my fieldwork as his research was similar but he had been unable to fly to the Arctic to a survey ship to carry it out. This meant that Therese a third year PhD student in my lab (my SUPER DTP funded helper) and Anton my peer in our second year of research were able to take the lions share of organising all the material and consumables we needed packing with me helping as well as I could.
We have been here in Oban for two weeks and have the remainder of this week left before our work is done and we head back to the University to analyse what we have found. Fieldwork is a very intense period, very long days, and work at weekends. However, I have managed very well by pacing myself and I think the enjoyment of the task has managed to enable me to change my 6-hour days into up to 10 hour days where needed. But that has been because of the help and consideration of my two colleagues making sure I did not overdo it and when needed stepping in to take over from me. Its an incredibly difficult thing to rely on other people when you have spent so much of your life being self-reliant and if you allow it, it is very easy to drift into the imposter syndrome of thinking that you are not really up to the tasks and perhaps you shouldn’t be doing this PhD. 
So just to sum up for any of you fibro warriors who are doing or thinking of studying at University be it a Ba/BSc or a PhD these are things I have found useful, some of them could be useful to you too.
  • The first and most important thing is be kind to yourself. Don’t beat yourself up about not getting things done. It isn’t that easy to do but it certainly makes life a bit easier
  • Don’t suffer in silence. Tell your supervisor and tell the School that you belong as soon as you can to head off any criticism of your productivity. It takes a huge amount of stress off your shoulders. Also, once you can show you have a health condition that impacts your ability to work they have an obligation to help where they can.
  • If your supervisor and the school know you have FM they will make allowances for deliverable deadlines.
  • Make sure your funder knows you have a disability. They will provide extra funding and more importantly time if it is needed to give you equal opportunities in your studies.
  • Your school will provide disability aids like chairs and keyboard stands if you need them.
  • Make sure you claim for things like PIP. Your studies are likely to be more than enough without the need to have to try to do some work on top to top up your grant or loan to put food on your table. Any extra disability-based funding you are entitled to will be very handy.
  • Don’t be too proud to ask your colleagues for help. If they know your situation, they are very probably likely to help you. Do not think you are being a burden on them they will tell you if you are taking too much.
  • Seek counselling and support. Universities provide this support, but as I am an older student, I chose to go outside the University with Combat Stress who I was already familiar with and a peer support group for men and their dogs called Pawpalz and of course FMA UK through the forum has been a great help.
  • Pace yourself. Learn what your most productive times are and use that. Maybe if you can try to stretch how much time you can do if you can without pushing it too far if you can’t stretch it then don’t and don’t worry about not being able to.
  • Don’t feel bad about having to take time off for flare ups. Make a note of it and if necessary, let your supervisor and your school know. It may get banked and added to your time later.
  • Related to the last bullet. Keep a journal, it will not only help with evidence if you need it, but it can also show you the progress you are making when you feel a bit low.
  • Don’t get caught up in the culture of ‘toxic productivity’. By this I mean don’t compare yourself to your peers and their progress they are them and you are you. Also don’t fall for the lines you will hear from old hands about thirteen + hour days. That just suggests to me that they are not very efficient. Do what you can in the time you can without feeling the need to stay until the bitter end to finish it, put it down and finish it the next day. I know that is difficult for some, me included, but it really helps.  You will produce what is necessary it just might take a little longer to do so
  • Keep social, when you have social interaction with your peers and people outside of the University it makes it so much easier to deal with your FM while studying. This doesn’t have to be something physical going out bowling or for a beer. just having a coffee and a chat works. Do whatever you are physically able to do.
  • Create and use your support network. Don’t spend the time sitting at home navel gazing your FM. It probably won’t help you.
  • And finally, you are not an imposter, you deserve to be there and with the right support you will get through

I still have at least a year to go on my PhD. With the additional time and time off sick it may be as much as two years. I still have moments where I think to myself ‘why am I doing this’ when my mood is low because my aches and fog are kicking in. At my age my motivation isn’t to get a fantastic job after graduating, it is because I enjoy the subject, my research topic may be an important facet to climate change management and mitigation, and I want to do this sort of thing until I can finally retire rather than sit at home alone, as I couldn’t do any of the other things I used to do in my career progression now. Who knows if I will actually be able to complete my research and produce something that is publishable? I try not to look that far into the future as it can get a bit daunting. 

For anyone with FM who is already in education, I feel you! For anyone who is thinking about taking on any new qualification. I would say go for it. It can be done if you can manage yourself and the expectations of those around you. 



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