Suffering a mental illness or living with one?

[Donte]

If you are older than ten years old then you’d probably remember a time when people were mentally ill.

I remember clearly that people were ‘sufferers’. Cancer victims, AIDS victims, diabetes sufferers etc.

In the not so far away past, not only in my country of origin,’but in Australia too and globally, an illness was looked upon as suffering claiming its victims, the patients.

Luckily, the last decade or so things have shifted drastically in most areas of illness management due to technological advances in medication, treatments, prognosis etc as the scientific progress has moved on making it possible for people to ‘live with an illness’. Instead of cancer sufferers or AIDS victims, nowadays we have people living with cancer or people living with HIV etc.

This is highly empowering for people who have been diagnosed with life-limiting and chronic illnesses. When you know that you won’t die ‘from it’ but rather ‘with it’ makes a huge difference to your outlook in life, your behavior, choices, planning for the future and setting goals to assist you with improving the day to day living and enhance the quality of life you have.

So now people are not suffering from mental illness, they live with mental illness. And that means they can thrive and enjoy life and be as creative and productive as they desire. Medication advances together with psychotherapy and counseling techniques and CBT and mindfulness, meditation, life coaching, group work etc allows individuals to manage their prognosis and have power in their hands.

With the arrival of NDIS and the inclusion of mental illness in the scheme, there are numerous supports in place for the individual who may pursue them and dare to dream! Dare to live again!

How’s the shift affecting you positively? Has your specific community caught up with the drastic improvements and shifts in terms of managing mental health and the way the responsibility now falls upon the person to make goals, dare to dream, plan and receive supports to make it happen? Are attitudes changing in your cultural or religious group? Are people in your circle more open to talk and access supports? Are you or someone you know LIVING with an illness or suffering it?

[Donte]

One of the difficult issues in regards to treating and managing some mental illnesses can be the challenging behaviours that cannot always be managed through activity planning or environmental changes. Particularly in many culturally and linguistically diverse populations there may be lack of awareness of various illnesses, prognosis and treatments and the impacts on the individual and others. Especially if the individual is hallucinating, or extremely aggressive or violent.

Unfortunately, in my community, like in many others, it is common for caregivers (usually elderly mothers who look after their adult sons), to be often reluctant to encourage their loved one to take medications for fear of making them groggy, sleepy, or listless.

There is lack of information in other languages around medication management. There are notions and beliefs that hinder compliance. There are many hindrances to the recovery mindset.

A proper level of medication can not only help to assure the safety of the caregiver but often can provide peace of mind to those having the condition. Medications for behaviour management can be used, in my humble opinion, when other strategies do not work and/or in conjunction with.

Of course only licensed personnel can by law, administer medications to patients within medical facilities.

In the home, paid caregivers can remind individuals to self-administer medications, and of course there are no restrictions for family caregivers.

It is important to be aware of the signs and symptoms of medication misuse though as often many non-English speaking elderly carers are at the greatest risk of becoming victims of challenging behaviours due to lack of understanding of the effects of drug interactions.

There are many experimental drugs available for all sorts of illnesses, and many have severe side effects. No matter what drugs are prescribed, family members should be aware of signs and symptoms of potential medication abuse and misuse. Often too, herbal and off-the counter medications, vitamins and herbs can have an interaction with some prescribed medications as well as certain foods, plants etc.

Mood swings, aggression, hostility, or defensiveness, increased anxiety and irritability, sudden confusion, changes in balance, sleep patterns, lethargy or apathy, unusual dizziness, changes in appearance, personal environment etc., can be side-effects of medication misuse but be misinterpreted as the 'symptoms' of the illness.

So what can you do?

[Peppermintbach]

Hi Donte’,

I like how you highlighted the difference between being described as a person who “lives with” an illness as opposed to someone who is a “sufferer.” I agree that using “lives with” can be very empowering...

I feel that you raised an important point about how many carers, especially unpaid elderly carers from CALD and with limited English, might be silently and quietly struggling with challenging behaviours in their homes. I feel they could benefit from assistance, information, etc. I wonder what do you think would be a suitable starting point to help carers from CALD backgrounds?

Pepper xoxo

[Donte]

Hi Pepper,

Yes, indeed. It is very empowering to ‘live’ with an illness rather than ‘suffer’ an illness.

When we make that shift in our mindset, it assists our recovery as it gives us control over the situation and reminds us that we are still here - living. This, we have choices and we can navigate our path to recovery.

We are not victims. We are not overcome by illness. We are not our illness. We are alive. We breathe. We are here. Now.

Thoughts come and go but our breath remains. We are not our thoughts. We are our breath. And we can tap into our breath and work with it to bring us to a calm, peaceful state where we can reconcile with our illness and take control of our lives.

In terms of education and support for culturally and linguistically carers we need to look at the age group and various issues in order to offer support.

There are different types of carers and they require different approaches: older non-English speaking carers (parents) caring for adult children with psychosocial disabilities; partners - caring for another partner; boomerang kids - (adult children who have returned home to look after an elderly parent); ‘sandwich’ carers (middle-aged carers looking after dependent children at home and their elderly parents simultaneously etc...

Each group needs different things and can access information and navigate supports in diverse ways depending on their language skills, computer literacy, access to computers and internet, external supports etc.

One size definitely does not fit all. It is a complex issue and thank you for raising it.

Currently, there are good intentions and progress made from various ‘mainstream’ organizations and government initiatives to inform, educate, advocate, refer and support people however, most of the weight falls upon families and partners. Carers are usually not recognized for the enormity of service they provide and neither are remunerated accordingly.

Hopefully with the advent of NDIS more supports can be in place to provide assistance and offer some respite and recognition to carers.

A big chunk of our population though is still missing out and struggles without many formal supports.

[Peppermintbach]

Hi Donte’,

What a thoughtful post 🙂

I like your point about how reframing our association with mental illness as something we “live with” (rather than “suffer from”) can help us feel more in control of our decisions and lives. I feel that’s so important for personal empowerment...

Thank you so much for answering my question. I completely agree with you that support for carers from culturally and linguistically diverse (CALD) backgrounds should be personalised as needs and circumstances vary...

I must admit my own personal ignorance when it comes carers; I’ve never been one personally plus most my extended family has a long standing tradition of “outsourcing” carer duties (i.e. paying professional carers to look after unwell family members in their homes).

Though from the little that I do know, I agree with you that a lot of carers are underappreciated and not compensated accordingly. I suppose it’s also a reflection of broader society. Typically “nurturing” roles aren’t very well paid relative (e.g. childcare workers, carers, etc) despite how important they are...childcare workers are grossly underpaid too, for example.

Look forward to hearing from you again 🙂

Pepper xoxo

[Donte]

Yes Pepper,

As a society and as culture here in Australia we value more footballers than nurses, movie stars than teachers etc.

It indicates the values we hold - ego, selfishness, lust etc.

Caring is not 'sexy'. Caring doesn't sell. No one cares really. X

[Donte]

Imagine if we talked about physical health the same absurd way that we do when we talk about mental health.

Let's say someone has an accident and injures their head, but instead of seeking help and call the ambulance or take them to the doctor; we say to them to stop complaining cause it will ruin the vibe!

Let's suppose someone is on a wheelchair and instead of helping them not to roll backwards down a steep hill we just sit there watch them and actually exclaim to them that they are not even trying to help themselves!

When someone has severe diarrhea, migraine, or slices off a finger with a knife, do we say to them to get a grip? Do we tell them that other people have it worse than them? Do we tell them to stop over dramatise things and being drama queens?

When a friend or family member is vomiting and has food poisoning, do we tell them off for not coming out to the party with us? Do we call them 'flakes'?

During sport someone sprains their ankle and needs to see a physical therapist, do we question them? When someone on crutches tries to walk down the stairs and they ask us to wait for them, do we tell them that their attitude sucks?

When people have to have insulin injections on a daily basis, do we just tell them to stop and breathe and meditate so they can manage their diabetes?

Someone who just got eye surgery, their eyes hurt and their eyes are wrapped in bandages, do we just pull the blinds up, let all the sun in and tell them 'enough is enough, time to get out, it's been a week already?'

Finally, if someone falls off the stairs and breaks their neck, do we say, 'oh, just think positively, you'll be fine?'

So why is it that we come up with such pathetic advice, recommendations and solutions, when someone has a mental illness? Maybe is better to not talk at all. It might be better to keep our mouths shut.

What do you think?

[Elizabeth CP]

Unfortunately you are wrong re attitudes towards physical illness & disability. There is plenty of negative comments & assumption there as well. Attitudes need to change re all forms of illness & disability. In fact lack of understanding can cause people with a physical problem to develop a mental illness.

My husband has been criticized for asking for clarification when someone tried to show the class something. He is blind but that was no excuse. He was told he should be able to see because he can walk with his cane!!!!

I remember my mum being treated as if she was stupid because she was in a wheelchair.

[Donte]

Some nights I am more aware of that strange space that has formed inside me, a kind of pure hollow. I can sense it at daytime too. This space signifies, one can say, a simple lack, a nothingness. At times, I can feel something like a dull pain in my chest - not exactly pain, but more like the difference in air pressure at the point where the material and the immaterial meet. I'm sure that's not a unique experience. I know many understand very well what I'm talking about. But even if not - it doesn't change a thing. Either way, it doesn't change anything.

[Donte]

This morning, I leaned back on my pillow and fell asleep. It was a short, dreamless sleep, yet when I awoke it was already getting dark outside and I couldn't remember where I was. My memory was a perfectly square, perfectly empty box. The only thing in the box was empty space. I gazed around the space. I found it wasn't just a void, but a dim room - cold, the window was left open, and took me a while to recognize the place, my bedroom. There were my pills and an apple core on an unfolded newspaper next to me. I felt confused. Why am I in such a weird place? (And I mean my headspace, not the room).