Tag Archives: Hidden disabilities

Managing Stress and Fatigue During Lockdown

A photo of Megan, author of this blog.

Megan Maunder is a PGR Mathematics student (CEMPS), who has kindly shared her thoughts on ways to manage stress and fatigue during lockdown. 

As a neurodiverse and chronically ill person I am finding lockdown particularly challenging. The change in routine, inability to make long terms plans, and absence of some of my favourite activities and distractions all add to my discomfort and my ability to self-motivate. Talking to family and friends, I am not alone in this. I’ve found one of the biggest issues with lockdown is that we are suddenly consumed by the minutiae of life. We often turn to the bigger picture to help centre ourselves and give us a sense of perspective, but now this may be inherently scary, and we have little planned to look forward to. Many of us are now bogged down in the small things, and whilst they might help and give comfort, they in themselves can also be a source of distress.

The uncertainty of this situation is something I’m struggling with but with the help of family, friends, mentors, and adapting my existing coping techniques I’ve found a few things that help:

Make Lists

We tend to be quite good at making to do lists when it comes to planning university work or errands but we’re not so good at doing this for positive things that help us feel better. Make a list of everything you enjoy that you are still able to do, activities, hobbies, and self-care. It sounds ridiculous, but often when I’m stressed I often forget what I can do to help myself. Make sure you schedule time each week to do some of the things on your list and, whenever you feel overwhelmed choose to do one of them for at least 10 minutes to help focus and calm you down. For me this includes Tai-Chi, short walks, reading, and I’ve recently taken up watercolours.

At the start of each week, I also make a plan for meals (with a few contingents) so that my partner and I know exactly who is cooking and what we’re eating each night. Making all my food decisions for a week in one block helps reduce some of the stress and fatigue around decision making. It also helps reduce food waste and it’s surprisingly easy to hype yourself up for whatever is planned that evening. Tonight I’m looking forward to making Mediterranean Tarts!

Routines

A picture of a To Do list in a wire-bound notebook, with numbers from one to four listed.

Plan your day and allow time for activities that reduce your stress levels. 
Photo by Suzy Hazelwood from Pexels.

Timers are your best friend. When I lived alone, I found it almost impossible to function well without them, particularly for meals and separating work and leisure. If you don’t like the idea of eating alone, I find the TV or video calling a close friend or family member helps. If you live with other people, I suggest setting a mutually agreed upon time for lunch and your evening meal. This gives you all a chance to decompress, and take some perspective and makes sure you eat and look after your body. For example, my partner and I  have set times for lunch and when to start preparing dinner, it gives us a way to manage our schedules, separate work and leisure, and encourages us to eat healthily.

Digital Boundaries

Most of us struggle with maintaining a healthy level of digital connection. Spending too much time ‘plugged in’ can often make me feel anxious and overwhelmed. Being apart from so many family and friends it’s tempting to schedule in more virtual commitments and want to feel more connected – I was definitely guilty of this at the start of lockdown! I was constantly connecting but I quickly felt burnt out and realised I needed more time offline and to myself. I’ve now cut down on online social events and massively reduced my social media consumption. I set screen limits for certain apps and make sure I have plenty of ‘analog’ activities. I’ve recently removed all work/university content from my phone and tablet. Before, with locations changing and travel I needed to access my work emails and files from these devices but now I’m permanently at home I only access them via my laptop. This way I can ensure my time off is truly separate from university work.

Top Tips for Dealing with Fatigue at University

 

Anna Donnan, second year Biological Sciences student.

Anna Donnan is a second year BSC Biological Sciences student based at the Streatham Campus. She is part of Exeter’s Fatigue Group and agreed to share some of her top tips for managing a degree whilst also looking after your health.

These are the tips for dealing with fatigue while at university that really helped me.

Get to grips with the support the university provides as soon as you can. In particular, having access to the accessible study rooms in the library was great as it saved me a lot of energy trekking around the university for a place to work, and allows you to take a break from the high energy atmosphere on campus which can feel overwhelming when you’re tired.

Get organised with deadlines. At the beginning of term, I try to identify when the big exams and deadlines are. This allows me to pace my work avoiding any massive crams and crashes.

When exams were coming up initial reaction would be to panic, bulk revise and burn out. I now try to work more constructively giving myself at least an evening or afternoon off to rest or sleep.

The fatigue support group meetings are wonderful and it is a great relief knowing other people understand how difficult uni can be with fatigue.

Don’t feel pressure to socialise all the time. Explain to your flatmates your situation. In my case, my flatmates were amazing and fully respected when I said I could not go out.

Bus passes can be a life saver, especially in second year when it’s more likely you’ll be living further from the uni. They also make shopping a lot easier.

Meal planning and healthy eating in general are important for me. It took me far too long to get into a routine, but cooking extra food in the evening for the next day or freezing portions has helped me to keep eating when I am too tired to cook.

It might just be me but cutting down on caffeine and sugar has helped me avoid crashing later in the day.

If you need to, consider all the options available to you. My fatigue started in second year and was at its worse during midterm making keeping up with work very difficult. It is not possible on all courses but I found out that I was able to change to part time study. Although it was a difficult decision at the time, I am very relieved I did for my grades and my health.

 

Managing the Demands of a Degree with a Long-term Illness

 

Cerys Whiting is a final year BA English      student based at the Streatham Campus. We asked her to look back on the last three years and her experience of studying at Exeter with a long-term illness.

“Be kind to yourself, ask for help when you need it, set attainable goals, plan ahead, prioritise, keep it all in perspective.”

 

When I came to university, I was undiagnosed and struggling to manage a condition I didn’t know anything about.

I started my English and Drama degree but soon realised I couldn’t compete with the physical demands from the Drama course, combined with my low grades I made the decision to drop it from my degree title. However, that’s not to say that my disability prevents me from doing the things I want to in life. It was just a part of one of the big life lessons I’ve learnt whilst here; my health is a priority. I used to feel guilty for saying it, the emphasis placed on university was so intense that I felt guilty for not attending a seminar, despite being in so much pain that I couldn’t get from the bed to my en-suite without crying. Acceptance isn’t something that comes easily when you’re diagnosed with a long-term medical condition.

For me, being diagnosed with Fibromyalgia and Joint-Hypermobility Syndrome midway through my second year was both a relief and a challenge. I finally could put a name to the chronic condition that had been hindering me for the last four years, but also found myself faced with a new set of rules. I was discharged back into my GP’s care with the advice to pace myself and research self-help websites. University is a stressful, often lonely time for a lot of students, let alone those with new diagnoses. That’s why I believe the support the university offers through the AccessAbility team is vital. The Fatigue Social Group is a place to feel understood and connected to other students, when you may be feeling so very alone. The sense of community is comforting to many, and the advice offered by the team including Disabled Students’ Allowances (DSA) and career advice, is unparalleled. I know my university experience would have been a lot harder without them.

“Recognising your right to say ‘no’ is a beautiful thing and a vital skill for someone with a hidden disability.”

Having a hidden disability is tough, it’s an undisputable fact that most people will judge from what they can see. From the angry looks from strangers for not offering up seats on public transport, to explaining to friends for the third time that although you might look fine you don’t feel well enough to go out; it all takes its toll. The internal monologue of wanting to push just a little bit harder, prove that you can still do ‘normal’ things, alongside perceived judgement from others can be not only isolating, but incredibly frustrating, and very often leaves you in a worse state. Recognising your right to say ‘no’ is a beautiful thing and a vital skill for someone with a hidden disability. You don’t have to justify yourself to anybody.

There are a number of things I could recommend from personal experience to make managing the demands of a degree a little easier. The primary solution for me is to ask for help when you need it. It doesn’t matter how long you’ve been living with your disability, whether you’ve been diagnosed from birth or just two weeks, there is always support available, so utilise it. I didn’t claim DSA until my third year of university because I felt undeserving of the help available, I’m thankful that I was persuaded otherwise as the equipment I received makes day to day university work a lot easier. I’ve maintained great communication with my personal tutor who is aware of everything going on in my life and supportive of my struggles. Just dropping your tutor a line or two to update them about anything significant that may be impacting your performance is worthwhile. Having an Individual Learning Place (ILP) in place means exam provisions can be put into place and is helpful for other aspects of university life, such as reduced seminar participation due to fibro-fog or needing to leave the room without question. It can reduce and often eliminate the embarrassment many people with hidden disabilities face when asking for help. There’s an efficient system in place to apply for extensions and deferrals if necessary. With some disabilities, especially those of a fluctuating nature it can be difficult to stay on top of work, despite your best efforts at planning. The mitigation system is there to be used in circumstances like this and applying for extensions isn’t something to feel ashamed of.

“When I came to university, I was undiagnosed and struggling to manage a condition I didn’t know anything about.”

One aspect of university life I really struggled with was feeling like I’d lost my ability to socialise. This should not be the case. Every society has a responsibility to make their events accessible, and lots have their own disability officers on committee. Speaking as a society Disabilities Officer, if you’re curious to join a society or have a passion that you’re not exploring for fear of being unable to participate, reach out to the committee, they’ll be happy to help.

Ultimately, I think every person will have a different experience at university, but it shouldn’t be overshadowed by disability, because we are not defined by our disabilities. As Mark Twain said, “comparison is the death of joy”, and often it’s about perspective. Rather than viewing my conditions as limitations, I remember that I have my own goals and methods of dealing with things. It may take me longer to get there, but as long as I reach that point it doesn’t matter. Be kind to yourself, ask for help when you need it, set attainable goals, plan ahead, prioritise, keep it all in perspective.

Studying with an Invisible Disability

Hannah O’Dowd, final year BA English and Drama student.

Hannah O’Dowd is final year student based at the Streatham Campus, studying BA English and Drama. Hannah experienced a traumatic brain injury in 2017 and agreed to share some of her insights into being a student with an invisible disability.

When I began university I was excited to continue my studies having completed my IB. I had no experience of cognitive deficits until on my Study Abroad year, when I sustained a traumatic brain injury. My brain could no longer process things the way it used to, and I’ve had to learn how my brain now works.

Before my injury I used to take pride in my independence, confidence, and seemingly endless amounts of energy. These are things which were snatched from me. I now question everything I say and do. I am far more analytical and I question other people’s actions and words, when before I wouldn’t have. I used to try and fit in more things in a day than was ever going to be possible before my injury; now I can only consider trying to do a fraction of the things I used to do. It is very difficult to explain to people why I have to do the things the way I do, this is because my brain injury is an invisible disability.

“I used to try and fit in more things in a day than was ever going to be possible before my injury; now I can only consider trying to do a fraction of the things I used to do. It is very difficult to explain to people why I have to do the things the way I do, this is because my brain injury is an invisible disability.”

One symptom of a brain injury which affects me is decreased verbal fluency. I have word finding difficulties (particularly when I am fatigued). The time taken for me to get frustrated (with myself or others) has also dramatically decreased since the injury. ‘Dropping an issue’ or ‘moving on’/’forgetting about it’ is a response which cannot be done with ease for someone with a brain injury. It’s often embarrassing to experience an angry response to something which I then later reflect to be unfitting for the situation. I have so much self-doubt about the placement of my anger and as a result I often seek confirmation from others to check that my feeling is founded. I used to be a dramatic person, but I was never an ‘angry person’. It’s difficult, but this reaction is because my brain no longer has the ability to process the information fully and quickly; I might misread something and react, and others won’t understand why I have that reaction.

Harsh sounds and lights can be very distressing to someone with a brain injury. But simultaneously trying to read something in dim light will exaggerate fatigue as it works the brain harder. Managing this is difficult and is a challenge every day.

Another common result of a brain injury is for someone not to be able to recognise what is or isn’t socially appropriate. For me, I frequently have ‘no filter’. So the things you think but don’t say, someone with a brain injury might say it. My brain no longer compartmentalises information the way it used to. As a result, I might disclose information which is not obviously relevant to the conversation being had. This can put me (and anyone with a brain injury) in a very vulnerable position; it is something I must monitor as best I can. This filtration that I now must consciously do, is a contributory factor to my fatigue. My energy levels have depleted massively. This is another change which I unfortunately have to get used to. Not only does the brain injury mean that I am far more tired, it also means that I experience pain on a regular basis. I might look like the same person but because of this invisible injury everything is very different. Every brain injury is very different, but all symptoms are exaggerated by fatigue.

“I am very fortunate to have a graduate role lined up for when I finish my undergraduate degree… I am comfortable knowing Accenture have supported me in my return to work over my summer internship and am confident they will continue to do so after I have graduated.”

I am very fortunate to have a graduate role lined up for when I finish my undergraduate degree. Before my injury, I worked for Accenture during my gap year and was meant to undertake a summer internship with the company in the penultimate summer of my degree. Due to my injury, I was unable to undertake the internship in 2016, but the Accenture invited me back to take part in the scheme when I was recovered enough. They were fully aware of my traumatic brain injury; with this in mind they placed me with a client located most conveniently to minimise my fatigue and avoiding the need for me to have extra travel.

When I began my project, I informed my line manager of my brain injury. I did this so that if I struggled with certain scenarios (for example: divided attention exaggerated by fatigue) he would be able to understand why I might find some things more difficult than others. He was very professional and understanding. I also was given the option to work remotely if I needed to and the company has policies in place to ensure I was able to attend necessary medical appointments around my work timetable. Remote working is something the company was very supportive of, for many employees and for varying reasons. At the end of this 8 week internship I was pleased to have been offered a graduate position with the firm. I am comfortable knowing Accenture have supported me in my return to work over my summer internship and am confident they will continue to do so after I have graduated.

While I was in hospital I wrote a blog (initially as part of my speech therapy) and have written a few posts since being back at University. This was something I found to be a good outlet for what I was experiencing. It was a way of me coming to terms with what had happened, and a way of explaining the situation to others.

As I complete my degree I am also creating a show titled ‘Unknown’  about my time in hospital and living with my injuries. I will be taking this show to Edinburgh Fringe in August 2019. I hope it will help the audience to understand the difficulties faced by trauma survivors.