This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

Mental health for support and carers

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Mental health support and assistance is a very critical concept. As the awareness of how much our society is attempting to cope with such a deep and broad spectrum of mental illnesses, it is becoming less taboo to talk about our struggles and to seek help. Last week was R U Ok Day, a nationwide (possibly even worldwide) day to make sure we are asking the question and prepared to hear an honest answer.

It is really easy for us to see a link between a person suffering from a chronic, painful, life threatening or life changing illness of any kind. We see that relationship and we understand. In the sane way we can see the correlation between people who have lost someone dear to them and the consequent depression or mental health instability.

But how often do we think about the mental health of carers, the support network and the people who suffer as by-products of just existing in the nearness of the patient during the course of illness? Sometimes we think about it, but feel it selfish to pursue. Perhaps it seems like it may be self-centered to seek assistance for how we are coping with someone else’s poor health? Perhaps you feel like you are jumping on the bandwagon of ‘Oh, yes I’m getting help for your suffering too.’

Let’s just stop that thinking right here and now. Let’s debunk a few misplaced ideas and misguided thoughts about this whole situation.

  • If someone close to you is in pain, you will be too. 

If you live with, are in love with, share or have shared a significant amount of your time and life with someone who is currently, recently undertook or will go through a period of hardship due to illness, disability or loss, you will experience the effects of this too. It may be in any form, and you may be able to cope with it or you may not. But to think it won’t have an impact on you is naive. The way in which you experience this will vary dependent on your relationship, involvement, the depth and longevity of the illness and what is required of it from you and the patient. Some people will over work themselves, some will ‘run it off’ at the gym. Perhaps it is intellectualising the illness with reams of research and collecting brochures on treatments and support groups. Whatever the way, it is okay to do this, as long as you are acknowledging it is your way of coping and it may not be the best way of coping for the patient. 

  • It is okay to seek your own professional assistance to cope

Carers and close loved ones are bitten pretty hard when the one they love goes down for the count. Part of it is being there to witness as an outsider the pain and life changes they go through without knowing first hand what they are experiencing, not being privy to all the doctor-patient conversations as well as the potential of having to leave the bedside at a designated time, after which you know they will be left in a sterile and lonely place without any of their usual comforts to await further isolating treatments and routines. This creates fear and an overwhelming depth of helplessness in those around a patient. Sometimes I think it is easier to be the one who is sick than the one watching it all happen. When a patient gets bad news and expresses their emotional and mental processing of their predicament the medical professionals are often very likely going to set the patient up with psychiatrists or psychologists. Someone who can help pharmaceutically, as well as address the cognitive processing behind the situation. That is great in itself, but what about everyone else sitting on the sidelines, twiddling their thumbs and asking the same questions over and over again, hoping for clearer answers and solutions? Did you know there are many avenues of help available for the support network and carers of patients?

  • How to be responsible and honest about illness

The most important thing to know is this: The earlier you disclose and the clearer your disclosure is, the best chance you have of getting everything that you need. 

It does not matter what your life situation is, or where you are presently. Students, casual, part- and full-time workers, retirees, pensioners and, yes, even dole applicants should pay attention here. As soon as you become aware that you or someone close to you is unwell you need to tell whomever is your ‘superior’. It does not matter if that is a year coordinator at school, disabilities/ student services/ academic chair at university, teachers/ lecturers/ tutors, IC/ 2IC at work, manager, deputy principal, boss, business owners, volunteer coordinator, parole officer, parents, partners, sports team members, siblings, childrens teachers, casual sex acquaintances, friends and coworkers (I tried to get the spectrum sorry I don’t know who is in your life so just trust me). Granted you need not tell everyone, and you may not want everyone to know everything. But you should sit down and logically think about how the illness has affected you, will affect you and what that means for your mobility, commitments, communications and routines.

Now, you may be questioning if I have gone a little off topic. ‘Wasn’t I talking before about the carer’s and support?’ Yes! But these still apply. Your stresses, depression and anxieties may be aggravated, created or enhanced due to your role in the life of an unwell person.

It can easily destroy good relationships in your professional and personal life, as well as impact your work standards and commitments in life. Don’t let it happen through your silence. 

It’s really easy to forget that people are good. There are few people in life that you meet that will make your life difficult when they know you are facing something hard. If they do they are dicks and they shouldn’t be in your life. Just make sure you start out on the right foot by telling people so they need not guess what is going on in your life.

  • The rights and entitlements you can ask for

This is not an area to be abused. This is not a cop-out to take advantage of in every job you work, or in every classroom you enter. But…

craft club

If it is your child, parent, sibling, partner, best/ oldest/ closest friend when you disclose to whomever (see above) what the situation is and what you feel it may require of you:

  1. Most places of employment (in Australia at least) will be able to recommend and help financially engage you in a counselling service. Small businesses are different, but for the most part if you inquire with the HR department, your department manager or the owner of the business about the nature of the situation and express the pressure and concerns you are feeling regarding the current circumstances, the least they can do is offer you leave to seek this help. This falls under the category of ‘Mental Health Leave’ and is recognised by the Australian Federal Government. There may even be a counselling body your place of employment recommends for a discounted price, if nothing else.
  2.  Mental Health Leave is an Australian Federal Government initiative and is not impacted by your sick leave accruement or your holiday leave. It is a small window of time entitled to Australian citizens who are experiencing mental health issues. To activate this you need to be able to prove the leave it directly related to the suggested illness and so requires proof of counselling, treatment, medical documentation etc. Unfortunately I cannot specify the details as I do not know too much, many of the smaller businesses will deny they have it, so if need to discuss an ombudsman in advance to be sure of your rights. I can confirm that employees of the Australian Government, even in the local shire councils, Departments of Education and Health Services (teachers and nurses) are definitely entitled to this.
  3. Mental Health Plan. This is a medical initiative and is activated by your doctor (General Practitioner/ GP). You approach them and indicate your present state of mental health. You need to advise the receptionist when you are making the appointment that it is for a Mental Health Plan as these appointments have a specific predetermined time-limit. Once you are in the appointment you complete a mental health questionnaire which indicates the exact nature of your illness and the severity of your need for treatment. Be aware that most doctors, on your first application for antidepressants, will insist on this Plan and will not prescribe pharmaceutical treatments for mental health without a counselling or cognitive therapy to coincide as often patients don’t disclose everything or there will be deeper underlying aggravants to consider and drugs can just be a bandage treatment, causing more harm than good. Often you can choose a therapist in your local vicinity or price range. The Plan enables Medicare to help you with the financial burden of the therapy and it also entitles you to 10 treatments in a calendar year. This is more than adequate most of the time, believe it or not. I know people who started out with it for one thing and ended up resolving a completely different deep-seeded issue a decade old. I use some of mine to talk about books or work out my assignments.
  4. Carers Leave is a bit of a different thing but it is still something wonderful to know about. My mother is taking carers leave from her work to look after me during my recovery from brain surgery. She is also using it during my chemotherapy. At one point in time Dad will alternate and take over. That’s not because she will run out but because he wants to be here too, and his boss told him he needed to take some time off. Carers leave, as far as I’m aware is a brief period of time, perhaps 10 working days. Enough time to help an unwell person recover from many illnesses, but not something you would activate for a person suffering from chronic illness. As with Mental Health Leave I know it is available for Australian Government employees and larger businesses, but I think you have the right to push for it in smaller businesses.

What ever the reason, never think that you are not entitled to seek help.

When I was in Royal Perth Hospital a few weeks back I began with a psychiatrist. I also sat down my four closest girl friends, both my brothers, my partner and my parents and said this:

“I would like you to let your work know I am unwell. Tell them I am about to have brain surgery on an unknown, recurring lesion in my brain. It may lead to chemotherapy or another tough treatment (I had a feeling even then.) Whatever the situation, the next few months are going to be all over the place and it may not be easy on you, as it won’t be easy on me. I want you to tell them whatever you feel you need to about how it will impact you and ask them what counselling or leave options they offer, in case things go pear shaped. You don’t need to tell me what happens if you don’t want, I just want you to know you can and should and it is okay if you do.”

Believe in the good in people, and you will always get the help you need. 

Gallowe and myself on date night a few weeks back

Gallowe and myself on date night a few weeks back

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Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

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