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Looking after ourselves

kristin
Senior Contributor

What does recovery look like for you?

Dear all,

Sorry, I have a burning question and I'm hoping you can help me here. I'm not even sure that I've picked the most appropriate topic area to start this discussion (if not the mods might help me out and move it please?).

I have just come home from my first meeting of my council's Health and Wellbeing Advisory Group (on which I am a community rep). It was pretty good in many ways, but it also rubbed salt in a rather old wound and begged this question. BTW I will be very upfront and say that not only am I interested personally what you think/feel about this, I also want to take the range (because that's what I think there will be) of responses back to such groups. Why is that? There seems to be a very predominant view, not only in society generally, but even in MH professionals where they should understand the nuances (like some at my meeting), that MI recovery = returning to paid employment.

I am happy to share what I feel about this issue a bit later, as I don't want it to colour your responses and I know I tend to be vociferous. I hope that's ok, if not please tell me! Thanks.

Best regards,

Kristin

 

 

66 REPLIES 66

Re: What does recovery look like for you?

Hi Kristin,
If it is ok with to ask, what exactly is the question?
At the meeting was there discussion around MI Recovery must mean returning or finding paid work? Or was there a low expectation that people won't return to or find paid work?
In either scenario, paid work is pretty hard to find! I do think my volunteering has helped my recovery immensely, and I would like to think I would have volunteered in my life journey at some point because it is rewarding to be involved in community. However, how I choose to be involved is a whole other discussion as not everyone has equal opportunities to volunteer due to geographic locations and many other factors.
Paid work or unpaid work...anything a person does to build a better life is fantastic, but we sometimes need time and training to get the confidence to try new things.
I am not a fan of punishing our community's vulnerable members such as single mum's and dad's, people on DSP, old age pensioners and young people.
The fact is, in some parts of Australia there are simply no jobs available so how can MI Recovery=paid jobs?

Re: What does recovery look like for you?

Hi Alessandra,

Thanks for asking, I guess I wasn't very clear about it was I? Too upset by this perception that MI recovery only = return to paid work. Sorry it obviously pushed my buttons harder than I thought. (I actually did a 10 week program last year called MI Recovery and that was exactly the line the course pushed, thnakfully the peer support worker who led it took a broader view).

So I guess if I explain some of the things that I think it can mean then perhaps it might give some pointers. I believe it means different things for different people. So...for some 

  • it may be recovery = return to (or remaining in ) paid work
  • it may mean being able to volunteer
  • it may be not needing to go to hospital, or not going often
  • it may mean accepting one's illness
  • it may be seeing MI as part of one's own personal life journey
  • it may mean accepting never being able to work in paid employment
  • it may be realising how incredibly strong you are to survive with a MI, when so many people (wrongly) see it as a sign of weakness
  • it may mean a sense of self-acceptance
  • it may mean being able to build resilience to MI in your family or friends because you've been there
  • it may be seeing the gifts you've gained from this "curse"

even a combination of the above, or other things that I haven't thought of.

I hope it now makes more sense.

Best regards,

Kristin

PS I'm interested in other people's views because we're all different and I value others' perspectives. I also want to explain to people like those on the committee that we need to work at defining recovery much more broadly lest we actually hinder those we're trying to help by hobbling them with unrealistic expectations (in the face of those excellent reasons you mentioned Aless, which I agree with whole-heartedly).

Re: What does recovery look like for you?

Hi Kirsten,

I'm called Hobbit, I'm mostly on the Carers Forum, but I saw your post and i think you have some excellent insights.

I think of all the points in your list, this is the most meaningful to me:

  • it may be realising how incredibly strong you are to survive with a MI, when so many people (wrongly) see it as a sign of weakness

I have a personal history myself, and when things start to get "complicated" I try to remind myself that, hey, I'm still here and still going, and there's a lot of strength in that.

I personally just try to find some purpose in everything I do, regardless of what it is. For instance, I had quite a few things on today. So what I do is, I write out a list of all the things I have to do (however small) and cross them off one by one as I do them. The last thing on my list for today was "SANE Forum" and just 5 minutes ago I crossed that one off the list. So I can now feel like my "purpose" for today has been achieved. This helps me to know inside that I am doing the things (once again, however small) that I am meant to do, it gives me a sense of stability and self worth...and helps me in my recovery.

PS - when I have crossed off all the things on my list, I screw up the piece of paper and throw it in the bin. I say to myself, that was today, I succeeded in it...now bring on tomorrow!!

I guess what I am saying is that recovery for me involves knowing I have some sort of purpose, even if I have to create it myself.

I hope this helps. Anyone have any other comments/ideas??

Re: What does recovery look like for you?

Hi Hobbit,

Thanks so much for sharing this. Yes we are so busy with the overwhelming task of remaining strong we often don't see it. I think we all need purpose in our lives. That's one of the more insidious things about the stigmatisation of MI sufferers - being regarded as "useless" which is so untrue. With a MI it is vital to develop emotional strength, creativity and resourcefulness just to survive.

I think the way you keep yourself going forward and accountable for what you need to do in your day is quite amazing. It is also a great way of giving yourself a daily dose of achievement, even if it seems small. I am hopeless with lists  - I nearly always lose them, I even lose my diary sometimes which is very stressful. I'm sure you have a great deal of purpose, you mentioned that you are also a carer?

I know just a little about what that can be like because my former partner lives with us and he's got PTSD too. He is very caring and generously helps where he can, but at times I feel like his carer because he can't handle it when I am struggling, and so I have to support him when I most need support. I can't imagine how I would cope if it was constant.

Keep up the good work. 

Best regards,

Kristin

Re: What does recovery look like for you?

Hi Kirstin,

I guess recovery looks different for everyone, because we are all so different. I think the thing is this - if you BELIEVE you are in recovery, and it's working for you, then you obviously are, no matter what you are doing.

Whatever it is we do, that's what we do, so the trick is to do it well, and be happy doing it. That could be a definition of recovery maybe?

Re: What does recovery look like for you?

Firstly, personally I certainly don't see my MI as a curse at all. I am absolutely fine with it.

Even though I have been relentlessly pursuing paid work, it has nothing to do with recovery. One reason is the shame of not working, which is not logical, and the second is the fact I would like to be able to eat, which is logical.

I neither see paid work as some sort of magic elixir to "cure"me or restorative in any particular way, other than those pragmatic reasons I have just mentioned.  It may be an indication I am feeling more "well", but not necessarily so.

Recovery to me has meant different things at different times. I have been in and out of clinics erratically since my teens.

My measure of recovery then, was determined by the length of time between serious episodes. effectively I would be unwell, then recover to a point of functionality, measuring recovery success on the time it took until the next one.

Recovery could happen because of effective medication, psychotherapy, a mixture of both or nothing specific at all.

I am not sure how well many in the medical professionals really understand the MI recovery process at all.

A number of GPS are disinterested and nervous about becoming involved with the illness.

A view often espoused by GPs is that it should be up to the profession psychiatrists, psychologists and other mental health practitioners to deal with. I am of their view that GPs should be part of the management process for recovery.

What is recovery any way. Its meaning has to be determined by the person going through that experience.

I have had various strategies handed to me, not against my wishes per se but more not taking my wishes into consideration.

I think we sometimes can be talked into undertaking treatment strategies because we are not always empowered to make those decisions. This is because of the special place medicos hold within the context of our experiences with our own mental illness.

So maybe in some instances medicos can interrupt recovery by their preconceived ideas about what recovery should mean and how it is measured.

Surely the restoration of an essentially functional state uninhibited by destructive behaviour or mood would signify recovery improvement. A state where a person is comfortable living with a situation gauged by their own feelings of wellness, recovery, if you will.

I remember, stupidly,  being convinced into undertaking several sessions of ECT and spending then next few weeks worrying about whether I would end up like Frances Farmer the American actress who had a primitive form of this practiced upon her, against her will, with disastrous consequences.

For me recovery is absorbing the essence of my MI, understanding it, and using its positive attributes as to reinforce my individuality and worth.

I have never felt like a victim and have never been bitter about being schizophrenic. I often wonder whether I have appropriate insight in regard to my illness, wondering if this has dimmed a realistic perception as to what it is all about.  But I think I do understand it and on balance am comfortable with how it sits with me personally.

Volunteering and associated activities for me are attractive from a public good perspective, socialising, accepting responsibility and a whole host of other benefits but I have never found them integral in any way in helping me recover.

It would be an absurd situation if the only method of measuring recovery success was for a person with MI to be gainfully employed in paid work. What about the large number where paid work is unattainable or simply work is not for them. It may not be their goal.

I value enormously the value of advocacy groups but I think it is important that no one loses site of the individual wishes and aspirations of each individual with MI. The aspirational primary objectives for people with MI of affordable housing, medical accessibility, opportunities for employment etc etc are essential.  But they must be relevant to the person concerned.

Apart from anything else, the practical barriers to employing people with MI are so profound that it is in no way it is a realistic proposition for most of us to attain that goal, so for those that want it those barriers need to be lowered.

But for the large number of people who cant work or don't want to work, strategies have to be put into place to ensure their needs are dealt with just as legitimately.

It is a valid decision when people make this choice. A decision about whether they have recovered should not be based on employment readiness or placement but by enabling them to access services within the context of not needing to work to feel that they have recovered.

Where I live in rural Queensland there a no jobs, non existent public transport, poor infrastructure and poor health services. The participation rate for people with MI is zero.

Recovery is such and individual perspective it probably is the case that recovery programs need to be totally individualised bearing in mind the specific nature of our own illness and experiences.

I have no family support system, so it is not an option for me to use that infrastructure to bolster my recovery path.

When I think about it, my closest friends all have an MI of one sort or another. I find that level of understanding to be more comforting than supposedly normal people offering sometimes manufactured sympathetic  but uninformed  support.

So when I distill it, recovery for me is being in a mental state which allows me to have a positive outlook on life for a prolonged period.

 

 

Re: What does recovery look like for you?

Hi Hobbit,

I agree that recovery looks different for everyone, that's part of what prompted me to ask the question. I think you are right - believing in ourselves and our ability is very important. 

I'm beginning to think that "recovery" might actually be the wrong word, becasue it is rather loaded with an unspoken and unknowable suggestion of not getting ill again. We carry enough daily baggage - the last thing we need to be saddled with is a concept that further loads us with such a huge life-time expectation.

So maybe the question should be what does wellness look like for you? This is a present thing, with far less expectation of a time frame of remaining well, but with a capacity to cover 5 minutes or 5 years.

What do others think?

Best regards,

Kristin

Re: What does recovery look like for you?

Hi Kristin, and Hobbit too,
I think recovery is a highly individual. Personally, it is living a life that is meaningful to me and meets my 3 vital needs, to be at home, to be someone and to be going somewhere.
So for me, to be at home is to be living in safe and security in terms of my emotional home, family and friends to be someone is to have my personal value and identity aligned with a health respect for myself and to be going somewhere, doing things that are purposeful to me.
So a return to purpose rather than necessarily a return to paid employment. Sometimes we have equally important roles that are unpaid such as carer, parent, partner, friend..paid employment is great if you can get it,...but purposeful life takes us through all aspects of our lives.
I think we are on the same journey of understanding...it is indeed a very individual journey...

Re: What does recovery look like for you?

Well said Kenny!
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