Stigma? I don’t think so! (Or not always)

Following the publication of the Scottish Mental Illness Stigma Study, writer Graham Morgan reflects on the limitations which mental illness can present beyond stigma.

I hesitate to write these words. They are about stigma and discrimination and shame and the assumptions it is easy to come to.

I know that many of us experience stigma in the workplace, in our family, from our friends and loved ones, from health care workers and that we can internalise it, think that we are indeed not worthy of work or friends or love.

It is true, that reality. We are the subjects of scorn and suspicion. We can be shunned, however I keep on finding a big but, forcing itself into my mind.

Although many of us are devotees of the social model of disability and include mental ill health in that; busy saying this is all society’s fault, which it often is; I think we sometimes wilfully ignore the reality of impairment.

Somehow we skirt the issue; too many people think there is no such thing as illness; that all our impairments are just natural reactions to the past or our environment; that although we get PIP we are not really disabled in the popular sense.

It has some truth but I do like the occasional reality check.

Think about stigma and relationships.

So many of us are isolated, ignored, seen as an embarrassment. So many of us also seem to avoid social contact. I know many people living in utter loneliness. I remember it in my own past and it was almost unbearable. Knowing people do not want your company because of your illness or behaviour is such a terrible, terrible, experience.

Think of Mary; prone to the most terrible depression which, at its worst, means that she struggles to get out of bed or to cook. Her house gets more and more dirty. She loses the will and ability to speak to her friends. When they do visit, the untidy room aches with the silence that cannot be broken and is full of averted eyes because she has not washed in weeks and has lost all motivation to keep her clothes clean. Imagine you are her friend and you love her but she never comes out anymore, cancels all social events or just does not turn up. I can easily see how in that situation, that the depression, the illness; not society, not prejudice, can cause the terrible loneliness we can experience. Should we reach out? Yes. And when that doesn’t work? And when the awkward silences start to become too damaging for us to cope with; starts to make her even more miserable than she was to start with?

Sarah, she is fantastic but she is estranged from her family. She knows that they are reporting on her movements to MI5 and eavesdrop on her through her phone. She has blocked them, but knows that they have done some sort of hack which means they can read her thoughts and track her movements. Periodically she throws her phone into the river. Sometimes her family come to her door but she won’t open it to them. She says her family are abusive and trying to gaslight her.

Is this discrimination? Is this exclusion? Or is it more complicated?

It is easy to say discrimination is the fault of the people around us; easy to say:

“Just try to understand them, stick in there with them.”

I can understand when we do not turn back into the lovely ‘normal’ people we used to be, that it is sometimes very hard indeed to stick by us for the duration.

Should we shame the parents who have been shouted at in the street again and again; who have the police called on them all the time? Or shame our friends who begin to drift away because connection, that most basic element of friendship, has been severed by the brutality of illness?

We need honesty, tenderness; an acknowledgement of how desperate our lives can be.

Sometimes our illnesses kill us, they can lead to homelessness, to drugs. Illness can wreak utter havoc with everyone we have ever trusted and loved. That is one reality.

We do not always get better. Ideas like recovery can sometimes cause us terrible, terrible pain because asking us to take responsibility for our lives when we know we yearn for employment, friendships, doing the shopping, cleaning the house, but that this is not possible. Sometimes we cannot trust those charged with helping us. We cannot attend our benefits appointments or fill out the forms that come through our door.

Sometimes there are practical adjustments that can be made which would mean that we would not be discharged if we missed appointments or sanctioned if we could not meet the demands of the DWP but some of it: we cannot really expect the acceptance we wish for, or maybe we should but it is harder to get than most people think.

Many of us do have people who understand, who get it and who stand with us through crisis after crisis. We are delighted and awed that they are there for us but many of us do not have this. The horror of the pain we are in can drive away those we love. It is its own trauma our friends go through with each attempt we make to die. Not our fault, but trauma nonetheless.

We cannot always expect people to put up with it.

They know it is not our fault, that it is our illness; but sometimes it is just too difficult, giving again and again the love we need that some of us cannot accept. To believe that we are not worthy of friendship — is that self-stigma or something almost worse than that because sometimes there are tiny elements of truth to it?

I see people in the autistic community who, long ago, stopped the rhetoric of cure and recovery; who baldly and maybe almost proudly say:

“I am different, you cannot change me: deal with it.”

What could we do in our world for those of us who are likely to experience the things we do for decades rather than months? Giving false hope by saying we are wonderful people, which of course we are, might not work because it doesn’t acknowledge that our impairment can deeply damage both us and those we love. We are sometimes not ‘normal’ and however much we question the use of that word, most of us know when someone does not fit the definition.

If we face this reality and if we have honest conversations we may find some solutions.

The first being that we did not choose this illness; we do not set out to manipulate or attention seek or act outrageously. We did not want to lose our friends. We did not seek out the horrendous lives some of us have. When people understand this, maybe they will be less judgmental.

Maybe more important is that when we acknowledge impairment as a real thing, we can start to think about how to adapt to it. Maybe the conversation should be: I love Mary and need to know how I can remain in her life and support her when she thinks she doesn’t deserve it; not, if she practices her CBT skills, life is bound to be easier, she just needs to make the first sign of a bit of effort. Or Sarah is amazing; how do I help her with her despair that she has few friends and that they do not tend to share her view of her parents at the same time as making sure I don’t suffer too much when she is getting paranoid about me? Maybe I can remain in her life but avoid the occasions I cannot cope with rather than saying it would all be better if she took more responsibility or I should just stay by her come what may?

Maybe, even though many of us cannot even accept we have an impairment, others who love us could learn ways of adapting to it?

Accepting we have life limiting impairments might be better than saying we are just victims of an unfair society.

Some of the attempts to liberate some of us from our oppression by psychiatry has resulted in the deaths of people I am close to. I prefer a more nuanced approach to our oppression and the reality of mental illness.

Maybe we need to respect the pain and sometimes the shame we feel about it?

Maybe we should tread that delicate line where we do not blame but do acknowledge this world is painful for us and those we care for, for very real reasons that sometimes have little to do with prejudice and more that mental illness can be an absolutely awful experience?