Updated 12 February 2013

To tell or not

Many people who have or have had a mental illness, feel they do not want to disclose their status. People fear that they may not be regarded as “normal”, and will be rejected.


Ilse Pauw is a holder of the Carter fellowship for mental health journalism from the Carter Center in Atlanta. This is part of her series of articles on mental health and stigma. .

“Do you know Yeats’ The Second Coming?” Sue (46) asked.

Turning and turning in the widening gyre
The falcon cannot hear the falconer;
Things fall apart; the centre cannot hold;
Mere anarchy is loosed upon the world.

“These words kept repeating themselves over and over in my mind. Well that is what mania feels like.”

Up until the winter of 1997, Sue thought she had it made: a loving husband, adorable one-year-old twins, a great home and a booming career as a lawyer. One text message was all it took to shatter her world.

Her husband had left his phone at home by mistake and when a text message came through, Sue checked it in case it was something urgent. What she read was: “Thanks for yet another wonderful time. Can’t stop thinking about you xxx.”

When she confronted her husband, he admitted to having had an affair for a while. He also said he had fallen out of love with Sue. Not knowing where to go or what to do, she moved in with a friend.

She started a course of antidepressants and her emotional devastation soon passed, to be replaced with happiness. She felt almost excited about her future. What she couldn’t know, was that her upbeat mood would escalate into elation and a four-week manic episode.

Personality changes
Sue’s friend was the first to notice the mood and behaviour changes. Sue had always been extremely tactful, and had tended to put herself second; now she became argumentative, irritable and brash.

Generally, she became extremely talkative, but erratic, jumping from one topic to the next (referred to as “flight of ideas”) and couldn’t keep up with ideas flooding her brain (called “pressure of thought”). Others struggled to follow what it was she was on about.

She made several unwise choices, went on spending sprees, and made two foolish forays into investments which nearly ruined her. She gave away most of her belongings, and could not remember who she had given them to. She would spend hours phoning all her friends and acquaintances (often in the middle of the night), and could go days without sleeping or eating.

“In retrospect, I should probably be grateful that I came out of it alive," says Sue now. "It's so scary how your judgement becomes severely impaired. I still shudder when I think of all the risky situations I got myself into.”

She became very promiscuous.

“I flirted with all my male friends, whether they were single or not." Fortunately, they were able to assure her afterwards that they didn't respond; that nothing came of it.

She wasn't safe among strangers, though: Sue says now that what frightens her almost more than anything is that she slept with strangers, and that there are chunks of time that she simply lost. She cannot remember everything and she has a real and legitimate fear that she may have been abused during that time.

Not all manic
“Without realising it at the time, I must have had some understanding that things weren’t right and that I needed to protect myself and others to some extent," says Sue. "I just had no insight into what was happening to me.

“But I made the wise decision to go on leave. This probably saved my career and my reputation as a lawyer.

"I didn’t trust myself as a mother and thought of every excuse in the book not to have contact with my kids. But at the same time I could not understand why my ex wouldn’t let me see them without supervision. This made me furious, but I’m grateful that he did that. I was incapable of taking care of them. I couldn’t even take care of myself.

“It was a very confusing time for everyone around me. Nobody had never seen me act like this before. It was as if I had become a completely different person overnight.

"I, on the other hand, couldn’t care less – I was enjoying myself. I felt on top of the world most of the time, everything seemed a lot more colourful, exciting and interesting. I felt extremely creative and resourceful and was furious that others weren’t happy for me,” says Sue.

She loved the attention she was getting from worried friends and relatives, but resisted all pressure to seek help. Eventually, she did agree to see a psychiatrist who made the diagnosis of Bipolar Mood Disorder (BMD) and put her on medication. She didn't agree that she was ill, though, so she seldom took her tablets.

When her family and psychiatrist threatened to have her committed, she finally agreed to be hospitalised.

Shame, stigma and depression
During the three weeks she spent in hospital, Sue gradually calmed down and regained insight into her situation. That was when the mania and elation turned into intense shame and a deep depression.

“The six months after I was discharged were extremely difficult. The shame I felt was unbearable. I felt incredibly exposed and did not want to see anyone; I was too ashamed. I still cringe when I think of all the foolish things I got up to, how badly I treated people and my strange behaviour.”

There is no cure for BMD, but it can be treated as a chronic condition.

Sue finds it difficult to accept that she was ill. Because she only had one manic episode and was fine before and after her illness, her diagnosis has since been changed: it's now referred to as a substance-induced manic episode, the guilty substance in this instance being the antidepressants she took after she left home. Her psychiatrist, however, still treats her as if she has BMD to be on the safe side.

“I did not, and still don’t, want to be regarded as someone who was mentally ill. The stigma against the mentally ill is just unbearable and I still cannot come to terms with it.”

She tells how her psychiatrist suggested she read a book written by someone with BMD and referred her to a support group. She read only the first couple of lines – she found it too painful to read. She also only went to one support group meeting. She did not want to be associated with others, particularly those who are floridly psychotic and who have a mental illness.

“I refused to accept that I had an illness. Perhaps I still do on some level.”

Limited range of emotion
“I used to think that I could predict how I would react to certain events. It is freaky that I behaved in such an out-of-character way. Although I’ve been in remission for almost 11 years, I always doubt myself: if I’m excited about something, I think ‘am I ill again?’; if I’m in love, I think ‘am I ill again?’ It is as if I have a much smaller range of emotions that I’m allowed to experience without me or others becoming concerned. That is one of the hardest aspects of having had a manic episode – your right to be frivolous and spontaneous is lost forever.”

Sue has a great group of friends: only one broke off contact because of how she behaved during her illness. She does, however, feel the fact that people become worried so easily about her, means that they haven't really moved on. “At some level, I'm grateful that my friends become concerned so easily. To some extent this makes me feel looked after. In fact, I've asked my best friend to raise his concerns if he ever has some. I know that if he does, I will have it checked out by my psychiatrist immediately. The lack of insight happens quickly, but fortunately not immediately. This is the only thing that gives me confidence that it is unlikely that I would get ill again.”

Her ex-husband is the one who is most concerned. She says she finds this frustrating and undermining, but admits it is probably a function of the fact that their children are living with her again. Their relationship has improved to a great extent.

Reluctance to disclose
Many people like Sue, who have or have had a mental illness, feel they do not want to disclose their status. People fear that they may not be regarded as “normal”, and will be rejected. So Sue has never disclosed her illness to employers or new friends. She battles with the idea, and is adamant that people should think carefully about who they trust with this sort of information.

Thanks to the fact that she took leave during her manic phase and when her depression was at its worst, her employer has never picked up anything.

She is grateful for friends' discretion – except for one, who does tend to talk about it. Sue suspects that this might be why she hasn't been in a relationship since then. “Whenever someone is interested in me, she tells them about what happened, and warns them that I'm 'not relationship material'. I'm not being paranoid – I unfortunately know this for a fact. This hurts and frustrates me because it means that I will never be normal in her eyes again.”

On her insistence, she remains on prophylactic medication. Although her psychiatrist (whom she still sees every six months) is confident that she will not have another episode, she wants to ensure that she will never relapse.

“My psychiatrist said that I mustn’t see myself as suffering from BMD, but rather that I’m living with it. It is my responsibility to manage myself in order to make sure that it never happens again.

“The positive spin-off is that I have a far greater understanding of what people with mental illness go through and I’m in a far stronger position to support and empathise with those around me who have had similar experiences.”

- Ilse Pauw

December 2008

Read more:
An Unquiet Mind by Kay Redfield Jamison.
Read an article on a woman's struggles with OCD.
The story of a father coping with his son's suicide.
Would Jonker have lived today?
Riding the bipolar roller coaster


Read Health24’s Comments Policy

Comment on this story
Comments have been closed for this article.

Live healthier

Exercise benefits for seniors »

Working out in the concrete jungle Even a little exercise may help prevent dementia Here’s an unexpected way to boost your memory: running

Seniors who exercise recover more quickly from injury or illness

When sedentary older adults got into an exercise routine, it curbed their risk of suffering a disabling injury or illness and helped them recover if anything did happen to them.