managing a research career with an invisible condition

This is a guest post by Dr Isobel Williams, a Postdoctoral Researcher in Psychology who recently completed her PhD in Clinical Neuroscience at the University of Sheffield, and is a founder member of the Disabled & Ill Researchers’ Network.

IW.pngAlthough most wouldn’t know it to look at me, I have been disabled since I was four.  I was so young that I can’t remember when it started, but I have been told that one morning I woke up complaining of knee pain, and was unable to walk. I was later diagnosed with Juvenile Idiopathic Arthritis (JIA), which is a childhood-onset autoimmune disorder in which the body attacks and damages the joints. Although the overall pattern is degenerative, I experience flares and periods of remission, which are difficult to predict and sometimes impossible to avoid. Some days I can go to the gym, other days I can’t leave the house.

Although JIA is relatively rare, the symptoms and surrounding issues are similar to that of many disabilities and illnesses: pain, limited mobility, fatigue, managing medication and treatments, unpredictability of symptoms, low mood and anxiety about what the future might hold. So, I hope the three main pieces of advice I am about to share will be relevant for many people, whatever their disability.

Disclose

In my experience, one of the things that people with chronic conditions hold most dearly is their independence – partly because disability threatens that. Having a disability forces you to re-think what ‘independence’ really means. You may find that you need to rely on other people to support you during your PhD / postdoc, as you do in the rest of your life. There is no shame in that. If your disability is not visible to the untrained eye, or you look well on some days (both of which apply to me) and you need support, you are going to have to ‘disclose’(i.e. tell people that you have a disability, impairment or illness) – People are not mind-readers, and they cannot help you if they don’t know that you need it or how you need it.

A good place to start is at the Disability and Dyslexia Support Service (DDSS), which you can do from right before you begin, until the end of your PhD (I’d encourage you to do it sooner rather than later though). They will draw up a Learning Support Plan with you, and with your consent, share it with the people who you think need to know.

I urge you to have a frank and honest discussion with your supervisors about the best way to support you. The university has a legal responsibility to put in place ‘reasonable adjustments’, and it is in everyone’s interests that you have what you need to succeed. Be clear about it: flexible working hours, a proper desk set-up, time for medical appointments, understanding if you are late with a piece of work, and a university disabled parking permit are all reasonable adjustments to ask for (and all ones I have been given).

I understand the reluctance to disclose, but I hope it reassures you to know that my experiences with disclosure have been very positive here. When I have run into difficulties, it was because people who should have been aware, weren’t aware of my disability. If you don’t get the response you need or hoped for when disclosing, there are people to support you (The Disabled and Ill Researchers’ Network, DDSS, your Disability Liaison Officer).

Set boundaries

 Part of letting people know how you need supportis about setting boundaries with others, for example, what they can:

  • reasonably (e.g., seven hours at work Monday – Friday with regular breaks, a paper draft per week) and
  • not reasonably (e.g., long days, working weekends, entire chapters in a week) expect from you.

This boundary setting will be much easier to do if you disclose.

It’s also important to set boundaries with yourself and stick to them. I know there is a culture of long hours and permanent exhaustion in academia (I sometimes wonder if people wear it like a badge of honour?) but make sure you take regular breaks and importantly, do not feel guilty about it.  Your good days may give you a false sense of security, but rest is necessary and is productive in itself – it allows you to recharge and get the most out of it when you do work. Your brain actually does a lot to consolidate memories and problem-solve when you are not engaged with a task, so, there are no points given for sitting at your desk all day achieving nothing and feeling rubbish about it.

Although boundaries sound ‘hard’, they can also be flexible – which is particularly helpful with a fluctuating condition. It is important to listen to what your body is telling you and respond appropriately. Learn to look out for signs that you’re having a ‘bad day’, and put in place compassionate strategies for self-care. For example, if you’re feeling run-down give yourself permission to go home early and have a good meal. Forcing yourself to keep working when your body doesn’t want to tends to backfire in my experience. Try not to burn out.

See the value in your disability and in yourself

One of the most important pieces of advice I would give, is to consider the fact that your disability is not necessarily a net-negative. Remember that your illness has shown you that you are resilient; getting a place on a PhD / getting a postdoc is a competitive process, and the fact that you’ve made it this far in spite of your extra obstacles is testament to your strength, tenacity, and resourcefulness.

Having a disability or illness can also give you a different perspective or new ideas about an issue that might not come so easily to an able-bodied person in research – use that to your advantage. My areas of research include the psychological aspects of movement disorders (you don’t have to be a psychoanalyst to see why this area is of interest to me #mesearch), and reflecting on my own experiences has definitely inspired some of my studies. Alternatively, the emotional and practical strategies you build through living with a disability can help you to cope with the emotional demands of a PhD or postdoc. Although it can feel like it, to my mind, being disabled isn’t always a disadvantage.

Final thoughts

Living with a fluctuating or non-visible disability is a double-edged sword. On the one hand, you are grateful for the fact that you do have good days and can ‘look well’ to others. On the other hand, you have the additional challenges of uncertainty and making hard decisions about whether or not to make personal disclosures when you perhaps would rather not. Having a disability in itself, makes an already difficult task (i.e. completing a PhD or getting a postdoc) even more difficult. However, it is possible to do, and will be a lot easier with the right support (the fact that I am writing this as a postdoc who completed within the time limit is evidence of that). I encourage you to talk about your disability with others and to be kind to yourself; not only because it will help you as an individual, but also because it will help us to build an open, inclusive environment for disabled people at the university. I am thrilled to see other members of the Disabled and Ill Researchers Network are already leading the way by sharing their own experiences through blog posts. You are not alone.

 

4 Comments

  1. Thank you so much for sharing this! I have battled chronic illnesses (including cancer) my whole life. I have good days and bad days, but my bad days can stretch for months, leaving me feeling hopeless about my future. Stories like these give me hope that I can still accomplish things in my life. Thanks! 🙂

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    1. Thank you Kelly, hearing this kind of response makes it worth me taking the risk of disclosing to the whole world! You most certainly can still accomplish a lot with your life!

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  2. Dr. Williams, thank you so much for posting this. I am a second-year PhD student with fibromyalgia (diagnosed just before my matriculation), and I’ve been struggling with anxiety, depression, guilt, and exhaustion around being able to keep up with my peers and making a good impression on my professors. I worry sometimes that I am no longer capable of completing the program. Reading stories like yours helps me feel like I can learn to navigate academia, too. If I may ask, did you begin your PhD with confidence about finishing, or was it something you developed over time?

    Liked by 1 person

    1. Hi Stacy,

      Thank you for your comment – it’s good to hear that my story is helpful to others. I’m sorry to hear you’ve been having a difficult time.

      I think a key difference between our situations is that I have lived with arthritis since I was four, so I have had pretty much my whole life to learn how to cope with it. I finished my degree and my masters with arthritis, when it was less well controlled than it is now, so I did begin my PhD with confidence about finishing… or at least, I never thought my arthritis would be the thing to prevent me from finishing! Your fibro diagnosis on the otherhand, is still a relatively recent thing, and it will take a bit of time to adjust to life with fibro and everything that it brings. It’s understandable that your confidence would take a knock, but there are resources out there to support you to complete your PhD in light of your condition, so there is still hope!

      Some (unsolicited) advice that might be helpful to you, is to try not to compare your progress with others. Everyone’s journey through their PhD is so different (whether they have a disability or not), so it rarely does anyone favours to compare themselves like that. I did exactly the same thing during my PhD and I never felt any better for it.

      As for making a ‘good impression’ with your supervisors, all you can do is be honest about how you’re feeling and try your best. If you have disclosed and set reasonable boundaries / expectations with them and you can meet your agreed targets, then that is all anyone can expect of you (a key thing there is to set targets you are likely to be able to meet!).

      Hopefully those two things will help with some of the guilt and exhaustion. Try not to be so hard on yourself.

      Liked by 1 person

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