T with ME: 2. Getting Stabbed in the Bum

This is the second in a series of blogs about how testosterone hormone therapy interacts with my ME. In this blog I write about my reactions to my first hormone injections over the last eight months or so.

Ow!

The first injection really set off my leg pain. I’d been considering using a wheelchair before, but this really made a necessity. Even getting from my bed to the bathroom – which in the temporary accommodation I was in at the time was an ensuite – was excruciating. Over the course of the evening the pain spread to my lower back along the length of my leg. This was aggravated by any movement or weight-bearing. I hired a wheelchair the next day.

I have not had such an extreme reaction to later injections, but think this is in large part because I pre-emptively use my wheelchair – no longer hired, but inherited from my mum – in the run-up to and after my injections. I’ve found that avoiding any activity which might irritate the muscle both before and after the injection lessens the increase in pain.

A lot of people have occasional pain or irritation in reaction to depo injections. (These are large injections that are injected into a muscle for slow release.) My reactions, though much less extreme now that I’ve found ways of dealing with them, are consistent. I guess this fits in with the muscle fatigue and heightened pain response I have in any case.

The other common way of administering testosterone hormone therapy is transdermal, through gels which are applied daily. I went for injections because I thought they would be less effort and not give me yet another medication to take with me wherever I go. After my more extreme reactions to my first injections I was considering changing to gel, but now I’ve found ways of minimising and coping with any pain I am happy with my choice of injected administration. Indeed, the pain has been less bad each time; at some point I may experiment with not using my wheelchair to try to work out whether this is my body getting used to the injections or just because of my wheelchair use.

Maybe this sounds quite negative. I just thought that it was perhaps the most obvious interaction of my ME with my hormone therapy. Overall the experiences both more complicated and more positive.

Crucially, since symptoms are exacerbated by psychological as well as physical stress, the psychological benefits of the treatment have had positive effects (though this has probably been less apparent in recent weeks due to psychological stress from other factors such as a dispute with the University).

The most obvious examples to me include a reduction in stress from talking to people face-to-face or – even more so – over the phone; as my voice has got lower I am less frequently gendered as a woman. Knowing this about my voice also means I feel freer in my visual expression, to look more androgynous or fluid, or anything else – to engage in something closer to as much genderfuckery as I like!

This greater freedom to be, a reduction of the feeling that I need to give visual cues is empowering, and feels like another weight off my mind, another stress lessened. These examples are indirect, but have been central to my experience in recent months. And, as noted above, this lessening of psychological stress has been beneficial for my ME.

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Work: a Response for Every Time Someone Asked “Anything Else?”

It’s probably not news for a lot of people I know (specifically those from the academic community that I have been on the edges of) that academic researchers are expected to juggle a lot of balls. The main project (in the case of myself and contemporaries, the PhD), any side projects, conferences and conference papers, writing journal articles, editing journal articles, teaching, any other jobs we have to remain financially solvent, applications for more jobs or funding… the list goes on.

What might be more surprising is the extent to which we, as PhD students, whilst sometimes bemoaning about how we have no social life, are complicit is policing our contemporaries’s success or failure in meeting these expectations.

“What have you been working on?” is a fairly common and innocent opening line is a postgraduate researcher dialogue. I don’t see this question as a problem; the problem comes in the responses to answers given to this first question. Most obviously, it arises in a follow-up question: “What else?” or “Anything else” or something of that ilk. It is these questions which prop up expectations which one could argue are unreasonable of anyone, but could more specifically identify as ableist, as well as discriminatory against anyone with caring responsibilities: anyone who has a rival claim on their time which cannot be avoided. I – and others – simply do not have the energy (or time) to have an answer to the “Anything else?” question.
To add insult to injury, identifying these unavoidable claims of time and energy is identified by contemporaries as “having a life apart from academic work”, as a luxury which – woe is them – they can’t afford. Yes, my having to take time to rest due to chronic illness has been described as if it’s a luxury.
Even if this last step is not taken, this attitude from PhD students is worryingly reminiscent of the broader pressure e.g. from research assessment exercises to publish a larger quantity of “research outputs” regardless of circumstance.
By this reckoning, even if I’m not seen as luxuriating when I rest, I am seen as not working (hard enough). As someone who previously had the actual luxury of being relatively able to come somewhere close to academic expectations, the realisation of how I was appraised by colleagues (and myself, since it takes time to shed a years-learnt value) was troubling. I’ve come up with the following rebuttal.
If work, in the academic context, is measured by the production of “research outputs”, then anything which it is necessary for a person to do in order to produce an output can be considered work. In my case, this includes time to rest: taking time to rest helps me to continue production both short term – in aiding concentration – and long term – in maintaining better health and thereby the ability to produce more. Therefore rest is work.
Rest is also, you say, necessary for fun. But, in a capitalist society, in which fun must be paid for in some way or another, work is necessary for fun. So rest being necessary for fun need not mean it is not work.
Furthermore, my maintaining of better health is beneficial to society in saving on medical bills. There’s another way it could be thought of as work. Thus, people who are unable to get a job due to health reasons are in a sense working by doing what is best for their health. I guess this line of thought might be more useful in integrating the argument above with ones about caring responsibilities.

With these points in mind, I hope it’s clear that it’s unreasonable and, frankly, ableist to say or even imply that myself and others in comparable situations are “not working hard”.
I should make note that the very idea that for something to be of value it must me “work” is problematic in itself. What I’ve argued for above is by no means a picture of how I think the world should be; it is more an attempt to unpack the problems in a certain series of questions in the hopes that this unpacking helps those of us in (or kindof-in) the academic community to make that community a less ableist place.

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T with ME: 1. Preparation

This is the first of what will become a series of blogs about how taking testosterone hormone therapy interacts with my ME. In this first blog, I cover things I’ve done before I have my first injection, as well as touching on some of the reasoning behind this series.

Firstly, I changed doctors at the GIC. I’ve written previously about the reaction of the first doctor I saw there to my disability. I eventually finished writing my complaint letter, and the clinic was pretty speedy at moving me to see someone else – my second appointment with a (different) doctor was only four days later than it was previously meant to be.

My appointment went better than I hoped. I had expected my new doctor to be passively better about my ME, i.e. not making an issue of it. As it turned out, he’d actively made an effort to find existing literature/case studies about people with ME taking testosterone :D.

He could not find any such literature. This experience matched up with my research (although I suspect he looked in more places than me, as I didn’t search any scholarly/medical archives). Hearing this made me surer of my wish to write this series of blogs, so there will be something out there for anyone else in a similar situation. Maybe there’ll be a formal research write-up too, but it’s early days yet – something for us to consider.

I know other people who take T who have found that it makes them feel more energetic, and they recover from exercise quicker. This is potentially a positive, if I end up being able to do more. I need to be careful though, in case it’s just that I feel more wired, despite having the same (lack of) energy as I have now, pre-T. If that is the case, and I overstep my capabilities, then I risk making myself more ill.

Another effect, and one we’re preparing for in advance, is muscle growth. Again, this may look like a positive, but may, as my muscles are developing, result in even more muscle pain. Hooray!

So, the person I see at the local ME service suggested that I start on a proper pain-management regime, such that I’ve built up therapeutic dosages of various drugs in advance of starting T. In order to have enough weeks to build these up, I had a week with health related appointments 4 days in a row.

Amitryptaline seems to be the go-to drug for ME pain. It also helps with getting better quality sleep. This does mean, though, that I’ve been trying to come off the drug I was previously using to get me to sleep, which has resulted in some pretty frustrating sleepless early hours. No more sugar cravings though. And given that T can also increase appetite, that’s probably a doubly-good thing.

So, even in advance of my first injection, T has triggered changes. And I am now the proud owner of a large 4-pods-per-day pill box.

7 day pill

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Setbacks in Health and Cutbacks in Healthcare Provision

It’s got harder for me to fit blogging in to my weekly regime. When your active hours of the day are already limited, what might seem like a minor further reduction of activity in terms of hours to others becomes pretty major. And that’s what’s happened: I’ve had to reduce my active hours per day once again, from six to five.

And no, that’s not “normal for a student”: I mean active hours, not work hours. These hours have to include my eating, my showering, etc – all the things that lots of people take for granted. They also include any social time I deign myself worthy as having. And I do deign myself worthy of social time, because however few hours I can do things, I deserve a life which is more than work and basic bodily maintenance.

The balance is precarious. I prioritise self-care (and I include a certain level of social contact within this, in some attempt to allay depressive tendencies), but find that the amount of time I require for this care, when combined with unavoidable other time commitments, like finding a place to live, results in weeks on end in which I produce no new work.

If my health has worsened, you ask, why don’t I take some time out of my PhD to build myself back up again?

Believe me, I’ve considered it. I already took one suspension in December and January when my fatigue was considered post-viral, hoping to recover. And with a chronic illness which lasts indefinitely, I have also considered whether pursuing the academic path is appropriate at all and if I’d be better dropping out altogether.

The thing is, if I was to drop out, I would be in no better a situation. In fact, I would probably be in a worse one. Because all my (disability-related) support is based at the university. Based on what I know from other attending these ME service clinics, even when the date of my first appointment with the local – and I’m lucky, because my closest ME service actually is local – service finally arrives, my contact with them, especially any one-on-one support, will be minimal compared to the weekly meetings with a mentor I have thanks to Disabled Students’ Allowance (DSA).

These meetings give me time to voice the frustrations – with my body and with other people – which build up between them, as well as to find practical solutions for any problems arising in a timely manner. Without exaggerating, these meetings are the reason I am still at university, even if you wouldn’t believe it from the amount of work I (don’t) produce. And so it scares me that funds for DSA are being cut. But we should remember that the reason I’m still in university is that I’m scared of the current situation outside. Other funds available to disabled people such the Independent Living Fund (ILF) are also being stripped away. Sure, I’m not eligible for the ILF, but people in my community are, and it scares me that their survival is being put on the line, and with no alternative being offered.

And we don’t just want a like-for-like alternative. Better, we want a radical expansion of health and social care. Then, on a personal level, my choice to stay at university would be just that: a choice, and not a necessary act simply for self-preservation.

I’m not trying to argue for this purely for my own benefit. But I couldn’t match other people’s efforts at presenting the general arguments with the amount of brain fog and headache I have now, and suspect I won’t have another chance to expand upon it for some time. A friend has written on the matter far more eloquently than I would manage over at http://livingwhiledisabled.wordpress.com/2014/06/08/save-dsa-the-ilf-the-nhs-the-dla-criteria-esa-without-cutting-it-funding-for-social-care-and-all-other-community-support/, for instance.

Setbacks are frustrating. (Househunting is also frustrating.) Screen cap from 1963 film version of Shostakovich's Cheryomushki, directed by Gerbert Rappaport.

Setbacks are frustrating.
(Househunting is also frustrating.)
Screen cap from 1963 film version of Shostakovich’s Cheryomushki, directed by Gerbert Rappaport.

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Feelings and Thoughts about Intersectionality, Part Two

Incidentally, after that last post, I saw a link to this essay by Eve Mitchell on a friend’s facebook wall: http://libcom.org/library/i-am-woman-human-marxist-feminist-critique-intersectionality-theory-eve-mitchell

Now, I admit that I haven’t read the whole essay. I don’t have the space in my limited energy-time at the moment. But glancing at it, I thought the way the author theorises intersectionality is a good example of precisely the criticism I mentioned earlier.

I also thought that the opening clause of the title, “I am a woman and a human”, is useful in pinpointing the difference of an understanding of intersectionality based on praxis. An understanding based on the day-to-day experiences of ourselves and others is necessarily holistic: it approaches us as humans.

And yes, I know that my use and Mitchell’s use of the descriptor “human” are at cross purposes. My point here is not to engage in a detailed rebuttal, but to take the opportunity to make another gesture towards the difference of understanding.

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Feelings and Thoughts about Intersectionality

The term “intersectionality” has become somewhat of a buzzword in recent years in feminist and other political circles I’m involved with. This isn’t to say it’s popular. Rather, the criticisms are part of what makes the concept of intersectionality prominent.

In a sense, my construction of the previous sentence gestures towards what I see as the nub of what is at stake: I described intersectionality as a “concept”. In treating intersectionality as conceptual, my language suggests it is something to be approached intellectually, to be theorised. My choice of language was loaded. I do not actually think this is the case. I think intersectionality is better approached through praxis. Perhaps this is why m two favourite introductions to intersectionality – Miriam Dobson’s Bob the triangle and Stavvers’ road junction – are both concise and practical. A lot of criticisms of intersectionality, however, attempt to take it on as a “theory”.

For my part, in this blog I explore how two aspects of my identity – my transgender status, and my disability – intersect. This means that I will examine some of the ways in which each of these affects my experience of the other one. In a way, this is related to the exercise I undertook last week, looking at how my experiences of clinical depression and ME interacted with each other.

Indeed, the experiences I recounted last week are relevant here, too. Let’s take the example of my trip to see a psychiatrist at the Gender Identity Clinic (GIC). For some people, a trip between cities to visit a specialist clinic means maybe half a day to a day out of work or study, depending on how long you have to travel. For me, trips to the GIC take up more energy than I aim to spend on any day. For my trips, I therefore take three days out of my week: one the day before to try to minimise any payback from days preceding, the day itself, and a day to start to recover. This does not mean that I’ve fully recovered by two days after, but that I hope that I’ve recovered enough to get back into a routine. (Finding a level of activity that you can maintain every day – or, speaking practically, most days – is a common practice among people with ME.)

For a more everyday activity in which my transliness and ME interact, let’s turn to my personal hygiene: showering is an effort. People think I’m joking when I say that, but it is. Physically, it takes up energy. There are some days when that is energy I simply don’t have. And on any day, the time and energy I spend showering is time and energy is time and energy from finite resources which I could be spending on something else.

The sense of dysphoria I get from my body is a bonus. On top of taking up physical energy, showering, since getting clean entails an intense encounter with all those areas of the body which just shouldn’t be the way they are, it’s psychologically distressing. So, because of my transgender identity, showering takes mental, as well as physical, energy. Overall, it’s a very draining experience.

By describing these intricacies of my life, the point which I’m trying to gesture towards isn’t new. I’m just adding my voice to those already advocating for a politics which respects lived experience, not just theoretical rigour.

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Yes, I’m depressed; No, this isn’t depression

TW: Ableism

I’ve lived with a diagnosis of clinical depression since my early teens. My ME symptoms have surfaced much more recently, since about seven months ago. Nevertheless, the recent developments in my health are frequently regarded – by professionals and others alike – as interlinked. In some ways this is useful: my experience of each has impact on my experience of the other. And coming to terms with a new set of capabilities and limitations has put stress on my mental health. At other times, however, the links made – again by both professional and non-professional people – are deeply problematic. Indeed, some remarks I have been the subject of are not simply unhelpful, but deeply ableist.

I’ll explore first an encounter I had with a professional person, a psychiatrist at a Gender Identity Clinic (GIC) with whom I recently had an appointment. I think it’s fair to say that we didn’t get off to the best start. The first question she asked was an enquiry about my general health. The GIC do not currently hold a copy of any referral letters etc regarding my ME, and she therefore may not have known about it in advance of the appointment, so I thought I ought to raise it, so we were on the same page. I was expecting to swiftly move on to the next question.

Instead, she replied by saying, “As a psychiatrist, I would say it’s depression. What do you think?” At the time, I was very kind in my replying, saying that I think that’s rubbish, as my body feels tangibly different. I associate depression with a feeling of lethargy, heaviness, inertia, very different to the muscle fatigue and lack of energy to do things, even with the best will in the world, that I feel nowadays.

Looking back at the appointment, I’m less forgiving. Our appointment lasted two hours, without a break – and that’s two hours of intense, no holds barred interrogation. Add to that the journeys between cities to get to and from the appointment, and it made a day which it took me over a week to recover from. Seems rather a thoughtless experience for any medical professional to facilitate. Coming from someone who feels qualified to comment on the diagnosis (despite it not being her specialism) it’s all the worse.

Furthermore, when I look back the bulk of our appointment feels like an attempt to confirm the depression hypothesis. In particular, I feel that my experience of and attitudes towards the multiple friends who have killed themselves over the years was overly emphasised, and strangely conducted. The thought aired by the psychiatrist, that my matter-of-fact attitude was “tragic”, seemed out of place. I can see why we got to the discussion, but not why it needed to take so long, extending my appointment time to such a ridiculously inaccessible length. A friend’s appointment of the same type lasted between thirty and forty five minutes, he told me.

Second, I’ll explore a situation with a nonprofessional, who regardless felt qualified to comment on my condition. This is someone I used to live with, but moved away from due to their comments about and actions relating to my health and gender identity.

When I was referred to the local ME service, I sent this person information about the condition online, and made an effort also to explain how I felt in terms which related to their own experiences. The response I was met with (both to this and to other concerns which I raised) was a link to a motivational website. Not wanting to cause offense, I said that this wasn’t my cup of tea.

In short, a lot of what followed were accusations that I simply didn’t try hard enough. Apparently I am mentally weak for wanting to be treated with respect, and for not fitting as much into my days as others do. This person had previously repeatedly told me to go out more, and to do more in general. And whenever I explained that this makes things worse rather than better, I was scoffed at, as if I was making excuses for being lazy – clearly I couldn’t actually be feeling that bad (physically).

The problems here were twofold: firstly, an equation of my state of mental health with physical symptoms, and secondly an utterly ableist attitude towards dealing with both of these. In short, I was told that the way my body felt was simply because I was thinking about things the right way, a statement which reduces the complex relationship between mental and physical health to a simple equation, and which reflects the problematic notion that the whole situation is somehow my fault, and a sign of my weakness as a person.

 

In my introduction, I did say that my experiences of depression and ME interlink, though. As I stated there, however, this in in a very different way to the assumptions made in the two examples which have made up the bulk of this blog post. Where each of those makes an equation, and proceeds more or less problematically from that, a better understanding looks at how my experience of each diagnosis impacts on my experience of the other. (This could be compared to an intersectional understanding of experience, as I will be writing about in a future post.) As I come to terms with my newer diagnosis, I keep a careful eye on my older one: as I said in my first post on this blog, I feel like the carpet has been pulled from under my feet. Having to abandon the busy life which once defined me is a distressing, and, yes, a depressing process. However, it’s also made me realise just how much my mental health has improved (on my terms) since, say, this time last year. I would not say that my mental health is good, but I know that if I had to come to terms with the changed capabilities associated with my developing ME, I would not have coped nearly as well then. It may not be good, but my mental health is certainly more robust now. And I’m proud of that. I’m proud that I can hear people say that I’m weak and know that they are wrong.

A second way in which one of my diagnoses inflects the other is precisely in situations such as the two described above. And I fear that my existing mental health diagnosis may continue to encourage people not to take my physical health complaints as seriously as they should. Saying this, however, I do know that this not being taken seriously happens to many diagnosed with ME (or seeking a diagnosis).

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