As some of you may have seen on my social media channels, I have decided to go back to school and finally finish my postgraduate education.
I actually started my MA in International Relations in 2011 and had to drop out twice due to increasingly failing health. The last few years have been interesting to say the least. Trying to balance learning more about my body and how to manage new chronic illnesses with trying to work and just look after myself has meant that I’ve had to start and stop a number of jobs and courses. Now, I have just started a Master of Laws with the Open University. And I am determined to finish it.
The last few years have been a constantly changing journey, and I’ve definitely learned a huge deal…not just about myself, but also about how society treats those with invisible illnesses. I know that right now I’m not in a place where I’m well enough to do the jobs that I want to do, or work ‘for the man’, although I wonder if enough support and concessions were there I would? I’m not made for sitting behind a computer all day. Honestly, that’s my biggest struggle. Either way, I know that I have to find ways to balance doing things that keep me occupied, motivated and engaged with the daily lifestyle stuff that helps me manage and cope with everything that my body throws at me.
This is why I have decided to start studying again.
One thing that has happened as I’ve got older (I think part of it is growing up, part of it is talking about it all publicly, and part of it is just not giving a damn anymore) is that I’ve learned to accept and ask for help when I need it.
When I was younger I was embarrassed to tell anyone what was wrong with me, and so it was more and more difficult to push through when nobody knew how much I was fighting and struggling every day. Now, I’ve learned that by being honest and open about the additional needs I have because of my illnesses, I’m able to get more help and support to just put me on a more level playing field with everyone else around me. And that’s nothing to feel ashamed about. In fact, it means that I can actually do a lot more than I would otherwise be able to do.
God knows what’s going to happen in the next few weeks/months, but I thought I’d share a little bit about the application process and why I’ve decided to go back to school. I should probably note that I went to an American university, so “school’ is what I call uni.
For just over a year I found that making my health the very centre of what I did was super important. Writing about it and taking about it was my way of learning to cope and understand. I thought that perhaps this was what I wanted to “do” with my life, ignoring the fact that it was always more of a necessity than a genuine passion or interest.
Everything that I did became about my health: my daily routine, my work life and my social life. While necessary, it was boring and utterly unstimulating.
One of the biggest challenges I face is not knowing how I’m going to feel when I wake up in the morning, and not knowing what I will or will not be able to do on any given day. Some days I’m able to push through. In fact, I can often push through for several days (I am an expert at it) but the problem is when I stop. I run off of adrenaline and that crash can often lay me low for weeks on end. I constantly feel as though I spend my life resting up for events to then wait and rest for the next time I need to expend energy. I don’t know if this is something that is going to improve over time (unfortunately, in two decades it has only got worse), but I’m determined to find ways to try and achieve the things I want to do anyway.
All of that makes it hard to plan work and study. As I wrote about recently, I decided to learn how to code, and started attending classes at General Assembly. I loved them. But after travelling across the city to sit for several hours at a time twice a week, I was already knocked out. By the third class I could barely focus on what we were learning, and I was spending any other time I had flat on my face in bed, exhausted and in agony.
So, yet again, I had to stop. A lot of my life is about making compromises, so now I’m teaching myself to code on Code Academy as and when I get a surge of energy and am thoroughly enjoying it. It’s something I can do from home, in bed, for free, and at my own pace. That’s pretty much the best situation for me to be in.
What I miss about working and studying is using my brain. I find that with flare ups I lose a huge amount of my confidence in my own abilities (which I know are there). I was one of those annoying kids that never really worked hard because I didn’t have to. I don’t really know how to study and I usually would just ‘get’ things when I heard it, so I didn’t really need to make notes. Now I find that my concentration levels have bottomed out, I struggle to remember things the way I did, and I have to work ten times harder to do things than I ever did. I know it’s because my pain levels are distractingly high, that spending time using my hands totally buggers them up, and that brain fog and fatigue are somewhat distracting, but still, it sucks.
I wanted to be a news producer or counter-terrorism specialist. There was a point when I wanted to be a diplomat, but then I realised I’m not the most diplomatic person in the world. But I think you can get my general area of interest. I founded the IPF, ran a project on Libya, was a Global Changemaker and a Virgin Media Pioneer. I’ve had jobs and internships that were fascinating, and some that weren’t. What I’m trying my hardest to do is find ways to try and ensure that I can do the things that I want to do, even though I don’t know if I can. We’ll see. I’m too stubborn to stop trying.
Building up to working again is a slow process. Just like anything, pacing is important. When I get totally flat out, I have to start walking again for just a few minutes at a time. It’s the same with work. Which is why I’ve chosen to study with the Open University (and do a course that’s of particular interest – human rights law and corporate social responsibility as my fist module).
I was actually looking at doing a law conversion with BPP, but after speaking to them, I realised that the intensity was way too much for me and they were unable to offer the support I would need if I was unwell. Having to stop and start things is one thing, but having to stop and have wasted a huge amount of time and money because you can’t get the help you need (and therefore unlikely to start up again) is another.
Even before I started, I received a huge amount of information from the OU. I spoke to their disability team about the support that they offer. First of all, the fact that the degree can be done in 3-7 years, means that if there’s a time when things are particularly difficult, I know I can take a break. Additionally, you can put a current module on hold and come back to it (which is reassuring because I won’t have to lose the money I paid for the class!) My classes are all online, and there’s only one a week. There was a ‘welcome day’ at their campus in Camden a few weeks ago, and I really wanted to go, but I wasn’t up to it. But it wasn’t necessary to my learning, so I gave it a miss. That’s one thing I’ve always been good at – figuring out what activities are worth spending my spoons on.
Once I had registered (on the last day possible, it took me a while to make the decision), because I had stated that I had disabilities, I was sent a form to fill in to explain my conditions and how it may affect my studies. A few days later I received an email from one of the advisors with a profile she had written that would go to my tutors and be on my “student homepage” to check that it was all correct. Honestly, just reading it made me feel so incredibly supported and like I was more able to really take a good stab at this to succeed. I don’t feel worried about asking for extensions or help when I need it. Being confident enough to ask for this is incredibly important. I’ve even got my text books wire bound so they’re easier to hold. I didn’t think something so small would make such a difference, but it really does.
I’ve copied my support profile below, as it may help some of you when approaching tutors and asking for support:
From the Disability Support form this is what the student says are the effects on study:
Natasha has been diagnosed with Ehlers-Danlos Syndrome (EDS-disorders of connective tissue), Postural Orthostatic Tachycardia Syndrome (abnormal increase in heart rate after sitting or standing up), histamine intolerance, and depression/anxiety.
As a result of these conditions, Natasha experiences issues with mobility, pain, fatigue and mental health.
Natasha explains that the winter is generally a lot more difficult for her in relation to her conditions. Therefore, tutors need to be aware that Natasha may require more support and flexibility at this time of year.
Natasha explains that she can get a headache if she stares at a computer screen for too long. Natasha will be accessing alternative formats of module materials to cut down on the amount of time she needs to use the computer. However,it is worth tutors being aware that Natasha may experience pain in this way whilst studying.
Natasha does experience issues with her memory at times, therefore she will need support to assist her with retaining information.
Natasha explains that due to the nature of EDS, she is sometimes unable to type due to wrist/finger dislocations. Therefore, this may slow down the pace at which can complete written work.
Natasha explains that the connective tissue disorder means that her joints are prone to popping out without warning. Natasha explains that she can never predict when this might hap pen or the severity of this. She stated that she can have no subluxations (dislocations), to over 100 in a day. Therefore her condition is very hard to predict and may differ on any given day. Tutors should ensure they remain in regular contact with Natasha to check on her progress.
Natasha explains that if the pain/fatigue she experiences is too severe she may need to request extensions; she will endeavour to ensure that this is not the case, where possible. Natasha will contact her tutors in advance of deadlines to make any such requests.
Natasha also experiences severe chronic fatigue and brain fog. She will have to study in a way that takes in to account the pain, lack of mobility and fatigue, to ensure that she can work as well as possible.
Natasha’s medical conditions and resulting symptoms also cause her to suffer from anxiety and depression. She finds that when she has had a severe flare up and is particularly unwell, this does result in her becoming extremely depressed. Natasha has said that having understanding, support and flexibility will help her a lot to succeed.
APPROACHES TO MANAGING WORKLOAD AND STAYING ON TRACK
Tutors will need to help Natasha to identifyand implement effective strategies for managing her workload and staying on track. This will include:
– advice on study priorities
– possibility of substitution
– individual study support sessions
– occasional extensions
Tutors should refer to the following information on supporting students with mobility issues: http://www2.open.ac.uk/tutors/disabled-students/tutor-resources/mobility-impairment
Tutors should also refer to the following information on supporting students with mental health issues: http://www2.open.ac.uk/tutors/disabled-students/mental-health-difficulties
Natasha will need tutorial handouts or alternative arrangements, such as support by telephone or email for any tutorial(s) she cannot attend.
The OU has also recommended that I apply for Disabled Students Allowance, which provides things like dictation software and other such goodies to help me with my studies. I sent in my application a couple of weeks ago, and received a letter last Friday saying that they needed more up-to-date proof of my conditions. This is something that I come across time and time again, and is, I think, quite common with chronic illnesses. Most of my diagnoses were made quite a while ago, and once the consultants have done what they can with medication, I don’t really go and see them. There’s no point. We know what’s wrong and there’s nothing they can do. I only go and see my GP for something acute, because, again, there’s nothing that they can do so it’s not worth wasting either of our time to just go in for a chat. Luckily, I have a really lovely and understanding GP, and because I need to see her for small things every few months, she is aware of how my conditions are changing and affecting me. So she filled in a form for me on Friday and I sent it off to the DSA yesterday. I’ll make sure to update you on the DSA process as and when I know more!
I’m nervous about taking the course, but knowing that I can do it from home and in my own time takes a lot of the pressure off. It’s nice using my brain again, and I think it’s just as important to prove to myself that I am still capable of a lot of the things I used to do. It sounds silly to say it out loud, but stopping working and studying hits your confidence hard. Despite all my illnesses, I am still me, and my ambitions and interests are still there, it’s just harder to find them sometimes when I’m so overwhelmed by what my body is throwing at me.
I’m currently three weeks ahead on my reading, so I can give myself enough time (working in small bursts) to write an essay that’s due in on the 10th December. I haven’t written an academic essay in years, and academic writing isn’t something I particularly enjoy, so I need to make sure I can manage my fatigue levels and wrist/finger/shoulder pain to get this essay in on time. Wish me luck!
And, y’know, I’m not gonna lie, it’s nice having a student discount card again 😉
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