Undiagnosed Treatment Resistant Schizophrenia

inkhart · ‎30-10-2018

Hello everyone

I'm at a loss of what to do. A close friend of mine has been struggling for the last decade with what we now believe is Schizophrenia.
She has had a long history of bad experiences with doctors not believing her and she has a very traumatic and distressing history.

She agreed to see another doctor, and got lucky with one who finally took her seriously and perscribed anti-psychotics. The doctor believed it was either Autism or Schizophrenia. Reports from her and her partner were that the medication was going well, though she was struggling with side effects. She was on them for about 3 weeks before something bad happened which she legally, socially, ethically wasn't responsible for, however she irrationally linked with to taking medication (something she views as wrong), so she reverted back to not taking them.

She paints the world with a very, very black and white brush. There seem to be things that no amount of conversation will change, and she's aware of it. According to her, bad things are just her fault, and she deserves it. It's likely she won't see that doctor again, at the very least, it will take a long time before she is ready again.

I know, as a carer, I'm only responsible for my actions and I can't make someone do something they don't want, but I'm just not sure where to go from here. All the services seem to say the first port of call is the doctor, and the one doctor who took her seriously said that there isn't anything that can be done while she still suffers from paranoia.

Thanks for your time,
Isaac

blondguy · ‎30-10-2018

Hello Isaac

Thankyou for having the care factor to post about your close friend and this awful illness, Schizophrenia.

My brother suffered from Schizophrenia in the 1980's and it was a very rough road to travel on being a carer. May I ask if your friend has had a confirmed diagnosis by a psychiatrist? The only reason I ask is that my brother was diagnosed by a specialist and then we were able to try to help out.

Having a reason not to take the medication is a common symptom of schizophrenia and the paranoia that can accompanies this illness

If you could provide additional detail about the diagnosis we can try to help more effectively Issac. Your well being is a priority here being a carer for your friend. Can I ask if you have a GP/Counselor that you can talk to as Schizophrenia is a complex and difficult illness to help/care for

Just a note :-)....The Beyond Blue forums are a secure and non judgemental place for you to post. Your privacy and well being are paramount to us.

my kind thoughts for you and your friend Isaac

Paul

inkhart · ‎31-10-2018

Hi Paul,

Thank you for your reply. I’m sorry that you went through such a rough road with your brother.

It’s difficult for me to talk on behalf of someone else, as I’m worried about including identifiable information, but I suppose the risks are relatively low.

Unfortunately, she hasn’t received a confirmed diagnoses from a psychiatrist. She says she has seen them in the past but was only ever diagnosed with “Chronic Low Mood”.

She has told me that she discloses all of the symptoms and history with the doctors she has seen, however no one had raised any red flags.

In her past, her friends have just “dealt” with the symptoms in often ethically questionable ways. People have then just given up on her and left.

If I’m honest, this raises a red flag for me, that she might be an “unreliable narrator”. How can so many professionals have not mentioned a schizo-related issue?

I’m consciously choosing to believe her, and trying to maintain healthy boundaries. I have a past issue where I tend to take on the issues of others and become too involved.

Ido have a GP that I see occasionally, and I’ve been meaning to find a new psychologist, perhaps having this to talk about with them might be a good motivator.

Thanks again Paul

Isaac

blondguy · ‎01-11-2018

Hello Isaac

Thank you for your kind post. It would be very hard for you to be going through caring about your friend the way you do. You dont have to elaborate on any subject that you dont wish to 🙂

Identifiable information can be a concern for new members for sure, even though the forums are a rock solid secure place for you to post Issac

It is difficult to hear the term 'schizo- related' as it may be offensive to people that suffer from this awful illness

You are very self aware (and good on you!) to understand the need to a good motivator to help you through this difficult period as a carer for your friend

I hope your friend has some peace through frequent counseling Isaac.....This can provide a some serious relief from our issues when we are in a dark place

Thankyou again for the super kind post!

my kindest for you and your friend Isaac

Paul

inkhart · ‎02-11-2018

Hi Paul,

I certainly meant no offense. Thank you for mentioning this though.

I’m still unsure how to refer to her illness, as it hasn’t been properly diagnosed. I was attempting to be broad to include both schizophrenia and schizoaffective disorder (and any others in this family/class).

Thank you for your kind words also! 🙂

Isaac

White_Rose · ‎02-11-2018

Hello Isaac

Welcome to the forum. As Paul has said, this is a safe place to talk about issues in your life and get support. The people who post here have a range of mental health issues and/or support someone with mental health condition.

You are in a difficult position as you have knowledge of your friend's life and illness yet you are unable to insist she helps herself, and as you have recognised, discussing her situation without identifying her is also hard. You are to be congratulated for reaching out for help both for yourself and your friend.

Refusal to take medication is commonplace with people with a mental illness no matter how severe the illness. For many it seems shameful, an admission they are weak for not coping with their various disorders and an obvious sign they are unwell. I know this is why I took a long time to agree to take meds. Once the antidepressant (and me) had settled down I found it helpful. Unfortunately you cannot easily transfer that knowledge to someone else especially when that person's view of themselves is clouded by their illness.

I congratulate you on getting your friend to see a doctor. It was a great first step for your friend and I imagine you were relieved to know she had finally accepted help. All the more disappointing when she stopped.

I think you need support from a mental health professional to help with your boundaries. I know it's very easy to step over the boundary and become a rescuer which is not good as you have already identified. May I ask, do you work for an organisation and your carer role comes from this employment? The reason I ask is because the organisation should have resources in place to help their carers in exactly this situation. Maybe a psychologist or the means to refer you to a psychologist at their expense. Many organisations have an Employer Assistance Provider (EAP) for employees who have work related difficulties.

Failing that you can ask your GP for a mental health plan which includes a referral to a psychologist. Some psychs will bulk bill. Have you ever discussed your friend's attitude with a psychologist? There comes a time when you need to move on from this sort of difficulty because of the effect on your life. This may not be the case at the moment if you are managing OK. I wanted to flag that option with you if it becomes necessary.

Mary

inkhart · ‎02-11-2018

Hi Mary

Thank you for your lovely message 🙂 I'm really glad to hear that you got a positive outcome from your medication, I went through a similar experience with mine.

I agree, having professional support around boundaries would help a lot. My carer role has just sort of developed on it's own... Unfortunately I don't have access to a workplace/employer funding or counsellor. I volunteer at a community organisation, but they are not large enough to have this infrastructure in place for volunteers. However, I've just booked in to see my GP and discuss options my with him.

With regards to my friend getting help, I'm trying to believe that this is just a stage in the process and hoping she'll keep on fighting and not give up. I am trying to prepare myself for the worst, though.

I have touched on it with a psychologist once, but had much more pressing things of my own at the time. I'll be talking with my new psych about it. The thought of moving on has crossed my mind, but I really struggle and often see this as giving up. There is a song called "Promises I can't keep" by Mike Shinoda (of Linkin Park fame) that sums up my conflicting feelings really well. I think I am doing OK at the moment. I have had a few wins with boundaries recently, but I think having a third party to keep this in check will be really helpful.

Isaac

Sarah4000 · ‎09-11-2018

Hi Isaac

Thanks for sharing your situation. I'm sorry to hear of your situation, it really is difficult. Hopefully me sharing my story may give you some support knowing others are in somewhat similar circumstance.

My sister has struggled with mental illness the last 20 years but this last year she has become much worse. I don't know if she sees a mental health provider as she is very hard to communicate with and doesn't welcome mental health treatment. In recent times she has hallucinated, thought she was possessed, thought someone was going to kill her and now hears things. This is all very real in her mind. She has also put herself in what I believe to be very dangerous situations. She is unable to manage herself or her finances and isn't really open or of a sound enough mind to get help.

I generally only hear from her when she needs money or is in a crisis.

I love her and want her to live a happy, content life but I really don't know how to help her. I've helped her the last 20 years and always been there but I don't know that I've really improved her situation.

Any advice is really appreciated as I'm lost.

Thank you

blondguy · ‎09-11-2018

Hi Isaac

No worries at all 🙂 I only mentioned the term as per my experience with this awful illness with my schizophrenic brother. I fully understand where you are coming from. The song that reflects your thoughts "Promises I can't keep" by Mike Shinoda" The lyrics speaks volumes not to mention its a great track too! Your friend has a special person (You!) that cares so very much and is doing the best they can....You have a super kind heart Isaac

Hi Sarah4000...Welcome and thankyou for being a part of the forums....I really feel for your sister and the pain you are both going through...Your health is just as important too as there is only so much you can do. May I suggest if you can start your own thread topic as you will receive more helpful replies instead of this thread as Isaacs situation will differ in content from you & your sisters situation (if thats okay) 🙂 If you have any questions I hope you can let us know when its convenient for you

my kind thoughts

Paul

Sarah4000 · ‎10-11-2018

Thanks so much Paul, I've popped my situation in a new thread.

Thanks