Self-stigma: how I buy the negative hype

It’s always interesting when the same idea starts popping up in a number of places. Over the past two weeks I have been noticing a lot of interesting stuff on the subject of mental health and self-stigma. The current issue of One in Four magazine has a useful introduction to the general concept of stigma in mental health, but what particularly interests me is when we as sufferers of mental health conditions find ourselves buying into society’s negative and shaming views of us. The concepts of internalised racism and internalised homophobia have been well explored in the fields of psychology, health studies and sociology. The idea is that when people find themselves in a marginalised minority, even when this is through no fault of their own, they will unconsciously take on board the negative massages continuously given out about the group by majority culture. This makes it difficult for them to be accepting of and loving towards themselves and their differences from those who stigmatise them.

As service users, we live surrounded by ideas that people who are mentally unwell are “different”, maybe even visibly so. We are seen as both so out of control as to be “dangerous” and “benefit scroungers” or “attention seekers” whose illnesses are not genuine. We are both “malingering” at a cost to the state, and seen as less worthy of being given a job than other applicants. We are both trying to “seem cool” in having “celebrity illnesses” and the kind of people to whom others do not want to live next door. We cannot win.

In an environment where these stereotypes are so frequently reinforced by the media and by uninformed friends, family or colleagues, it’s very hard not to end up taking some of these negative messages to heart. While I was thinking about this issue, I came across an article from PsychCentral entitled “Mental Illness, Shame and Self-Stigma”. It points out that self-stigma can take a number of forms, including hiding our illness from people who might actually be supportive; considering ourselves as different from other (real, scary, crazy) mental people; and considering ourselves less worthy of help and understanding because we have a mental, rather than a physical, illness. This week too, a Twitter friend blogged about feeling unworthy of taking up a JobCentre Plus suggestion of applying for disability, rather than jobseeking, benefits. Despite all that it has cost her (and that is a lot), she does not feel her illness is worthy of being seen as a disability.

What about me? I would love to be able say that all the positive things I do to try to break down mental health stigma start at home, with my own attitude towards my illness. And perhaps I am open about sharing my diagnosis and information about my treatment plan with others in a matter of fact way. But self-stigma still has me well and truly in its grip. In a way, the fluctuating nature of my condition makes it easier for me to believe that even its worst excesses were “made up” or “just my imagination”, because whatever I feel disappears again weeks or months later. I can be in the utter depths of depression one week, exhibiting a host of textbook symptoms (some of which are very clearly observable to others, like over-sleeping, constant crying, unwillingness to engage in activities I normally enjoy), in absolutely no doubt that I am depressed, and terrified that it might never recede. Then as soon as the cloud begins to lift I start to think, “oh, it couldn’t have been all that bad, surely. I must be exaggerating. How self-indulgent!”

While I am depressed, of course, my thoughts tend to run around in a riot of self-stigma. I brand myself stupid, lazy, an idiot, and many other harsher, more Anglo-Saxon terms. I stare at myself in the mirror and snarl at myself to snap out of it. I start to believe that my friends are bored by me, my partner will leave me, I will never ever get back into gainful employment. Hyperbole and a Half’s excellent Adventures in Depression, which was another thing that popped onto my radar this week, has a fantastic part written/part drawn account of how the self-hatred-depression loop works. In my worst depths earlier this year, I start to externalise that self-hatred. I began to “see things”, as if my real life was a film and someone had embedded a frame or two of shocking imagery every so oftem, designed both to get my attention and make me say, “wait, what, did I just see what I thought I saw?” The “things” I saw were all incredibly graphic, horrifically violent flashes of me harming myself in extreme ways that I would never have consciously imagined. Like watching scenes from a war zone or torture session, they left me very shaky and frightened.

What about hypomania? Surely that shows I am really ill? I mean, that’s the bit that got me the bipolar diagnosis in the first place. And I couldn’t be doing it on purpose to play a “bipolar role”, because until I the diagnosis this year, I had no idea that the symptoms I was experiencing were those of a bipolar high. I am talking about bizarre stuff, stuff about which I think at the time: wow, I really could not make this shit up. Stuff like:

  • Compulsively exercising for twice as long as I could when I am well, and yet still having to force myself to stop;
  • When I am finally able to get some sleep, waking up from glorious, hilarious, beyond-technicolor dreams, laughing out loud;
  • Eating something quite normal and feeling like my head is going to explode from the intensity of the flavour, or having to avert my eyes because a cushion is so purple it hurts, or finding the volume of my own footsteps unbearable;
  • Being on public transport and suddenly realising that every single person is shockingly beautiful in their own way, like a host of TfL angels; or unaccountably hot and hard to stop staring at; or strangely hostile and staring at me.

Experiencing these symptoms, I know for certain I can’t be inventing them. It’s like some sort of special filter has been applied to my senses, causing me to genuinely see, hear and taste things differently. It’s been a while since my last hypomania, however, and now I find myself starting to think – but did I really think that, feel that, hear that? Surely I could have reined myself in, got a grip, stopped being so ridiculous? If anything, I’m probably harder on myself about my hypomanias than my depressions. After all, who would want to be depressed,? Whereas, like many bipolar people, I actually being hypomanic (as long as it’s not at its worst excesses) and I can’t be truly ill if I am enjoying myself, right? On an intellectual level, I know that hypomania gains its own momentum, and that it becomes hard to motivate yourself to do things that might pull you back from a high, so I shouldn’t beat myself up if I don’t do every single thing possible to bring myself down. But guess what? I still do.
Then there are the “normal” phases. There haven’t been that many of them in 2011 and they don’t last long (a week, or a fortnight – I think three weeks is my record since Christmas). Which of course is why I haven’t been able to go back to work yet; both my employer and I need to be reasonably confident that I will be able to attend consistently, without either bursting into tears because someone says good morning to me, or deciding that I am the finest that has ever graced my profession and that I will become annoyed if I am not permitted to work 12 hour days without breaks. But those normal times, the times when I actually feel like the “me” that I was before this episode, are the times when I feel most guilty. It is then that I start to brand myself a malingerer, and feel that I not deserve the sick pay or the understanding. When I feel well, I go out and do things which are supposed to help my recovery. I take long walks; I make sure I meet people and don’t isolate myself; I do yoga; I meditate; I volunteer; I read; I blog. Yet even though I know these things are helpful, and my psychiatrist approves of them all as part of getting better, I feel guilty – again because I enjoy them. I don’t feel that someone on long term sick leave should be enjoying themselves; I worry about a colleague on a lunch break or a leave day seeing me, and thinking, “hmm, she doesn’t look very sick.”

The interesting question for me is: would I feel this way about myself if I had a chronic, fluctuating physical condition? I have no way of telling.

About purplepersuasion

40 something service user, activist, writer and mother living with bipolar disorder. Proud winner of the Mark Hanson Prize for Digital Media at the Mind Media Awards #VMGMindAwards
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11 Responses to Self-stigma: how I buy the negative hype

  1. immji says:

    Excellent excellent post.

  2. Craig says:

    Thankyou for illuminating this subject and linking it it to other forms of self stigma.I recognise all the things you have said in regard to the feeling of shame and guilt that as someone who has suffered from depression, you take on the mantel as a ‘benefit cheat’ for little reasons of your making. Redundancy and the threat of, are so common place in our vocab that I feel the devastating impact that it brings about now goes unreported. An oblivion that only those who have been there can understand. In similar way, as a black man, I have lived with internalised racism, I just wasnt prepared to have to deal with mental health stigma on top – the fall out of being ‘shot down’ in the work place. The article is a reminder that whilst we are all just a trip and fall away from devasation that mental heath can bring about, we neednt take the icy path of the uninformed.

  3. JuliesMum says:

    Actually, it’s really interesting what you write here. I’ve had a chronic back problem for several months, but the pain comes and goes, and I realised that when I felt Ok I felt guilt-wracked about being signed off sick. In the end I had to keep a diary of my symptoms to convince myself in the good times that there were bad times! I was really taken aback by how hard a time I gave myself about this. So my guess is that it’s not just mental illness that does this – in my case I put it down to a sort of overactive protestant work ethic.

  4. showard76 says:

    Great post as always! I agree with the fact that we tend to self-stigmatise, but I think it’s hard to avoid doing so when your condition makes you feel so unworthy all the time and indeed would we feel/act the same if it were a fluctuating physical condition – I don’t know…

  5. Alicia says:

    Excellent post – as always, you put things really well 🙂
    I blogged on the same sort of thing a while back ( and I think it makes things really difficult. I find myself censoring myself because I worry that, because I am having a good day, I must be making it all up.

  6. Great post. I tried to blog about this very subject recently but have discovered I am not capable of coherent writing atm. You’ve said pretty much all I would’ve said 🙂

  7. Jess says:

    “The interesting question for me is: would I feel this way about myself if I had a chronic, fluctuating physical condition? I have no way of telling.”

    As a sufferer of a chronic, fluctuating physical condition.. yes, you would.
    When I feel comparatively ‘normal’, I lose sight of how bad I was. I feel like people are judging me if I go out and do something normal, and they’ll think I’m not actually ill any-more. Whilst I always dread my illness flaring to where it was when I was at my worst, if I just have a worse-than-normal week and then a bad-but-pretty-normal week, I’ll wonder why I felt so rubbishy about everything in the worse-than-normal week. Maybe I was over-exaggerating. Maybe it was just because I was too focused on my symptoms and not just getting on with it. If someone says I look well, maybe I’m better than I think I am. I have a constant level of self-criticism.

    We, too, face stigma and misunderstanding, and I understand to a large extent the difficulties you face. I have 2 very close friends with mental health conditions and we identify a lot with one another. Their illnesses are no less valid than mine. They have no less control over theirs than I do. But friends that know me well, and know them less well, are very quick to judge. They seem to think that I deserve more respect and understanding about what I go through than my friends do. Yes, I have more physical pain than they do, but they hurt just as much.

    People often fight to point out that our illness is a physical one, and whilst I understand (there is plenty of evidence), I find it upsetting the way they talk about it as if it is ‘them’ and us. We’re all in this together. People with mental illnesses have chemical imbalances, it’s not their choice, we have mucked up stuff in our bodies and no choice in the matter either.

    I’ve rambled a bit, but I just wanted to say my bit 😛
    Lots of hugs to all those of you hurting, in whatever way,
    Jess X

    • Hi Jess, so much for your reply. A friend who has chronic back pain said he is *excatly* the same way in that even though intellectually he knows that at times he has been unable to move, when it eases he too thinks,”it can’t have been THAT bad.” When I think about times that I have been temporarily physically unwell, I realise that I can’t belive now how bad it was then. For example, when I was pregnant, I had hyperemisis gravidarum. I had no quality of life. I couldn’t eat, I spent all day with my head down the toilet. I forgot that I wanted a baby; I forgot that the point of it all *was* a (planned, wanted) baby. I just wanted it to end. I didn’t pay enough attention my son because I was to ill to do so. And then in the middle trimester, it went, I felt fine and straight away I thought – it can’t have been THAT bad. *shakes head*

  8. Great post, you write so well. “Then as soon as the cloud begins to lift I start to think, “oh, it couldn’t have been all that bad, surely. I must be exaggerating. How self-indulgent!” ” – I eally related to this. It must be even harder with the ups to deal with as well. 🙂

  9. Jill says:

    I am so glad I found your blog. I am recently diagnosed bipolar although it was something I suspected years ago and was dismissed by my GP at the time. I have told no-one yet. I’m too scared of what people will think. This is a feeling that has followed me all my life and led me to almost withdraw from society completely. Please keep writing, you have an excellent way of putting things into words that many of us struggle to even say.

  10. Edie says:

    Thanks for writing this post. I’ve been talking about this issue with friends lately, because it’s come up. I feel like I’ve worked through my self-stigma, but I forget that not everybody is in the same place as me, not everyone has had the same life experiences as me, and I shouldn’t judge people.

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