Dave's Progress. Chapter 46: To Disclose or not to Disclose: That is the Question.

It would appear that one of the major issues facing those who experience mental ill health is whether or not, and to what extent, they disclose information about their experiences and diagnosis. Because of the high levels of fear and ignorance which surround diagnoses of mental ill health (one could argue, in particular, schizophrenia) many face the the threat of discrimination or rejection if they disclose information about their illness. This threat may not need to be actual, but rather anticipated, so affecting the behaviour of those with a mental illness. However, there are also great advantages to revealing one's illness. The matter of disclosure, then, would appear to be a somewhat confounding double-edged sword, with both advantages and disadvantages.
As Professor Graham Thornicroft points out, the advantages include allowing other people to help, enabling a person to join self-help groups, being able to advocate for one's own treatment and care and to join groups campaigning for better mental health services. They can also include triggering extra welfare benefits payments and removing the stress of "keeping a secret". Further, telling one's story can be a liberating and empowering experience, reducing social isolation and loneliness.
In contrast, disclosure can result in having to face ignorance, misinformation and discrimination. It can result in people identifying you solely with your diagnosis, i.e. by giving it what is called "master status" and can colour the views of doctors, for example, when investigating physical problems. It can also lead to reduced opportunities for employment, while non-disclosure prevents employers from making so-called "reasonable adjustments" to accommodate your illness. It can also lead to other types of social exclusion, e.g from marriage or child-minding. It can lead to others seeing your every action as related to your illness and may mean either avoidance or over-protection from family members.
All in all, then, as Thornicroft points out, "decisions by a person with mental illness about whom to tell, what to tell, and when to tell are fraught and far from straightforward."
I should perhaps mention here the person who I seem to constantly quote and steal information from, Professor Graham Thornicroft. I do this because, of all the research I have done, he has perhaps written most widely and in detail about stigma and discrimination and his book, "Shunned", from which the above is quoted, contains a wealth of information, statistics and observations about stigma.
Anyway, I write this now because I feel I myself have faced this difficult dilemma in recent social situations. Why? you may ask, as anyone who reads this blog will know I have a diagnosis of schizophrenia. That is correct, I am, to many, already "out", as it were. But, not everyone reads this blog and even those who do don't have any idea what I look like. It is a far cry from doing a personal testimony in the local paper, which we often do at MAGMH, where your identity is completely revealed and EVERYONE KNOWS!
So, when facing people in social situations whom I don't know, but am, say, engaged in conversation with, they will often ask what I do for a living which inevitably leads to me either having to lie or launch into an explanation as to why I do not do paid work, which inevitably again may lead me to revealing my diagnosis. And mentioning the dreaded "s" word would seem to induce either a deadpan, "oh", or a direct reaction of fearfulness or of surprise. Because I come over as just a "normal" fellow, people are sometimes disbelieving of what I tell them. Because of the way schizophrenia is viewed, they seem unable to believe that a person with it could possibly be as ordinary and functional as me. It is often, then, that I don't seem to face that much prejudice, but rather just misunderstanding because of all the misinformation out there about this disease. And maybe that isn't too bad.
Indeed, in an ideal world, I would shout my diagnosis from the roof tops and exclaim, "I have a diagnosis of schizophrenia and am proud of it!" In reality, and in certain situations, I still feel the need to keep my diagnosis "secret", simply because, in some instances, it would be just too lengthy a task to explain everything. Also, I must say, that I am often "not proud" of my diagnosis. While I can relate to schizophrenia as a purely medical term, I cannot relate to what it means socially or culturally.
So, disclosure, for me at least, remains a tricky realm. Until the "s" word is perhaps understood better by the general public and not continually misrepresented by all forms of media, I shall remain a partially closeted sufferer, and so far this has worked well for me. I would still want a world, though, where the labels didn't matter and people simply saw me for me. Until that happens, to disclose or not to disclose remains the question for many.
That's all for now from your normal, average, paranoid and delusional man.

Comments

dcrelief said…
Dear David,
Your post touches the very heart of my life. I'm reminded of times I'd like to go and "fix", what others have torn away from within me.
My diagnosis is "Chemical Induced Fibromylgia." With that no psychiatric file is left open. To do so would have meant that I could sue for malpractice. Our statue of limitations, to sue doctors, is two years. I discovered that way too late for restitution.
Instead my records were transferred to my regular md. Best there because of so many allergies I have as a result.
So imagine my protest when meeting some kind mental health well being, and meaning people? 'Surely I'm not crazy?' I thought.
Your's and Klahanie's blogs have helped greatly with the technical aspects I need, and the emotional and spiritual outlooks that improve quality of living.
At times I think what scares me... is that my well being is dependant upon recession of Fibro. This year I've been very ill because of my struggle. It has finally worn down my physical health. And yet, I needed to know what I've discoverd. In the end it gives a better life.
Family is not going to come around easy, if at all. I am grateful to have 1 of 20 cheering me on.
The few friends I have I cherish. We stay in touch and that's golden to me.
Employment would appear to be out of my reach.
I hope I'm not so far off in writing this. Yet it is about disclosure; the importance of accepting ourselves with love, when others are not ready.
Kindess and apperciation,
Dixie
klahanie said…
Dear David,
I very much understand what you are trying to allude to within your posting.
I have been in social situations that did leave me anxious about revealing the truth about having a mental illness. Like you, I come across as an easy-going, friendly person.
Yes, I too have this dilemma about explaining why I am not in paid work. Yet, I try to tell them that, despite circumstances, I do my best to contribute to society in what I hope is a meaningful way.
I will tell the whole truth if someone wants to know. If the reaction is negative and judgemental; then I realise that there are still people out there who would rather believe in the stigma than see me for what I am.
Most people are supportive of me when I reveal my 'secret'. This is most encouraging for they try to understand that, despite some, what could be considered, overwhelming circumstances in my life; I am determined to not let my diagnosis be the dominant factor in my life.
Excellent posting, David. I hope that more folks will check out your thought provoking site.
In peace and empathy, Gary.
David said…
Dear Gary and dc,
Thankyou both for your very full responses. I'm glad that you find my post "relevant" to yourselves, as it does seem to be quite the conundrum.
To dc in particular, thankyou for your openness and I hope your struggle with your illness continues to go in a positive direction.
To Gary, thanks for promoting my blog so selflessly, and I hope people do realise that both of us contribute what we can, despite the labels we carry.
Wishing you both Wellness and Peace,
David.

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