Published:

(The image is sun and thunderstorm depicting the extremes & turbulence)

This is potentially a very controversial topic to be writing about, but I feel it needs to have its own page in the process.

I have had my own experience of depression, suicidal thoughts and anxiety. However, the black cloud that enveloped me was a temporary state of my own reality. I do not have these tendencies on a daily basis and have forged my own ways of coping. I am an extremely positive person that had these feelings whilst being bullied at school and when I experienced extreme unforgiving pain following a road traffic accident, which resulted in suicidal thoughts. One of the coping strategies, found me putting pen to paper and writing poetry that can be pondered upon in published anthologies. My first piece of published work was at the meagre age of 12, I continued to write to expel the dark demons that encroached my mind throughout my teenage years. The irony is that when I am compelled to write I am stricken with negativity, fear and self hate, this however, seems to enable me to produce my best work. I genuinely find it difficult to write happy poetry that paints a wonderful picture.

I thought the best way for me to address this particular topic was by writing about it. It is my most comfortable medium to express my thoughts and feelings.

I have spoken to friends, family and patients about this subject and I noted a distinct pattern. Despite the amazing boost to the talking therapies and the encouragement generally to open up about the things that maybe affecting you, there is a section of our community that are affected by mental health that receive no help, no matter how much they talk about their issue. These people are the partners, the siblings, the sons, the daughters, the parents and the carers of someone struggling with the daily battle of depression, anxiety or other mental health issues.

Living with someone with these issues conjures a myriad of emotions for the bystander. I say bystander as there is very little you can do to help them. It can feel frustrating, debilitating and heartbreaking all rolled into one. The instability, the emotional roller coaster, the uncertainty of what each day will bring, whether they will be up or down. Whether they will be getting out of bed, whether they will be angry, whether they will be crying and inconsolable.

The worst part is having to watch them hit a spiral of self destruction and not ever finding the code word to break the spiral. Trying constantly to remember that this behaviour you are witnessing is not the real them, and the person that you love is always in there somewhere, even when they seem to be buried deeply under the layers of desolation and despair. When they say hurtful things and cannot explain why, remembering it is not their words but the hurt that has been done to them projected onto the one solid part of their life that they hope will be constant and not abandon them. I heard a girl on BBC radio one talk about her father being an alcoholic and her having to separate this into two people. Her Dad the fantastic man and her Dad riddled with the alcoholism monster. This is a fairly accurate description of how I try to focus myself, and how others seem to quantify the experience too.

I cannot begin to imagine what it must be like to live within this life of despair, and I am grateful for all the charities and movements that are in place to give someone direction and help, but in some ways I feel it is harder to be the carer. There are no charities to help the carer. If you go to the GP they don’t refer you anywhere as they can’t, there is no rescue ladder to help the helper climb out of their own enforced prison.

Every day is a struggle for both parties involved. I do not know what the answer is as yet, but I do know that we need to address this issue and as we encourage people to open up and talk, we also need to encourage support for the carer that is under extreme pressure.

If I bail and abandon my loved one I am ridiculed for not supporting them, if I stay with my loved one I endure a life of difficulty, hurt, pain, love, torment, accusation, happiness, delirium, euphoria and delight.

During this state they are unable to think of anyone but themselves due to the overriding and overwhelming debilitating emotions. Not capable of taking on the concept of another’s emotions. It is not their fault, they have diminished capacity for anything other than themselves. This negative drive may mean that as a carer or partner you may note the following-

anger
hate
fear
anguish
panic attacks
paranoia
self loathing
feelings of being a failure
a lower sex drive
a lack of desire to socialise
a lack of desire to participate
cancellation of social events
sleeping
lack of motivation
lack of enthusiasm
telling you everything in their life is awful
nothing is worth the effort
love
hyper-adrenalism
mania
Amongst other signs and symptoms.

Remember it is not them, it is something they are having to deal with, it is something that grows and manifests as though they are possessed. If they had cancer or MS you would be able to see the metamorphosis. This pupae is subtle and the butterfly never emerges without help.

I decided to conduct my own qualitative research on this as I am a scientist at heart and wanted to ensure that my friends and family were not just empathising with me. It was unlikely that quantitative research would be possible to conduct and we all know that it is much more difficult to formulate results with emotions and opinions but I was hoping that the views of complete strangers may help identify patterns.

I asked for volunteers to honestly answer a questionnaire that I had devised. The prerequisite was simply that they were or had lived with a sufferer of mental health issues. Age was not a distinguishing factor, neither was the type of relationship, nor the type of mental health issue. The questionnaire would be completely anonymous. All questionnaires were included. 50 participants responded. 50 volunteers contacted me to offer to help. The volunteers were gathered from twitter and Facebook. Any answers that were repeated were not listed separately.

Living with a mental health sufferer questionnaire

1 What is your relationship with the person that is suffering?
2 How long have you known they have had a problem with a mental health issue?
3 What help have they received?
4 What help have you received?
5 What help would you like to receive?
6 How does their mental health condition manifest itself?
7 How does it make you feel?
8 Do have support from anywhere?
9 Do you think a Facebook group would help?
10 Do you think you should have access to counselling?
11 How does it make you feel when the sufferer is considered but you are not?
12 What kind of techniques and strategies have you tried to either help the person or to be able to cope yourself?

 

Thank you for helping me with this questionnaire.
I have been living with someone that has a mental health issue for almost all of my life. First my father and now my husband. I am finding it to be a very isolated experience with little to no acknowledgement of how it impacts on my daily life.

If you have any further comments please add them on. All comments are welcome as this is a collation of information.

1 Daughter
Husband
Son
Mum
Dad
Step Father

Conclusion – anyone is affected

2 One and a half years.
19 yrs but they intensified about 10yrs ago.
My son 11yrs old when I noticed things weren’t right .
I first discovered my mum’s issues when I was about 8 years old around 31 yrs ago
It’s only in my later years I begun to understand my dads issues but I now recognise he had problems for many years prior.
From me being a child
Conclusion – there is a distinct longevity to the presentation of the condition.

3 Anti depressants and counselling.
Help from private counselling which I sorted as the NHS were taking months,
Help from mental health services when severe enough to be referred to the crisis team
Self referred hypnosis.
Had to fight for my son with the NHS for children’s mental health and then into adult mental health .
My mum was on and off section for most of my life in mental health institutions including the old and more modern hospitals and also under psychiatric help
None he still does not think he has issues
No help at all.
Conclusion – there appears to help if you are considered severe enough or in crisis, otherwise there is help if you can afford to pay privately. The support and help seems to be varied in effectiveness.

4 None
2 counselling sessions self referred and funded
I was spoken to by my mum’s psychiatrist a couple of times to check on me
Counselling, cognitive behavioural therapy, Nlp , Eft all self referred.
Self referred to a councillor to clean my head after all this years.
Conclusion – unless you beg your GP for medication you are looking at self referred counselling support only.

5 Someone to help me as a father understand her illness better.
Honestly , I’m unsure what I would want or need
I’m ok I just cope
Unsure sometimes I feel I need more help other times I feel ok with what’s happened to me!
Conclusion – help and support groups including people in similar circumstances may be helpful. The majority seem to just try to cope and get used to this way of existing.

6 Withdrawal
Spending money
Extreme high mood then low mood
PTSD
Depression
Mood swings-emotional/angry
Not sleeping
RLS
Intense sweating
Exercises more.
Goes very quiet
OCD, so this can become more intense when he is more anxious.
Anxiety
Doesn’t leave the house
Low mood.
Manic depression
Bi polar
Self harm
Multiple suicide attempts
Tried to kill family members
Violence
Seeing things
Hearing voices.
Beating family till on the floor and still kicking them.
Hurting family because of hate for no reason.
Conclusion – multiple presentations with varying levels of severity

7 Makes me feel helpless
Sad,
Frustrated
Tired
Numb
Sometimes I feel angry that I have to deal with it .
I have been on and off antidepressants just so I don’t feel my own emotions, just so I can function and go to work as I was the only bread winner at 1 point .
I felt like a robot, ground hog day!
Unworthy
Useless
Scared
It is like living in a prison
Powerless
I couldn’t help my mum and sister. I always thought if I could be a boy I might be able to help!
I don’t know what’s calm and normal family
What love is from a father.
Living with person like that is toxic and can destroy your thinking about life and yourself.
Conclusion – sadness, frustration, anger, tiredness, useless, unworthy, scared, powerless are common feelings experienced by the carer.

8 My wife
I have no support ( I don’t ask parents )
friends do not understand
Only from my step dad and younger step brother we all dealt with it together but I have to keep an eye on my little bro he has signs if depression and struggles with coming to terms with it …… They do say mental illnesses can be contagious
Not at this moment
Conclusion – either no support at all or family only

9 Sometimes
Anything which gives people help easily is always going to be good .
Probably wouldn’t help me but I would be part of it to offer support for others
Unsure sometimes I feel its good to share it helps others other times I just can’t face it
Conclusion – The common opinion is that even if a Facebook group didn’t help them, it may help others, but definitely having a safe place to chat with people in similar situations may be of benefit.

10 A group of other parents
Sometimes I would just like to release my thoughts so sometimes I would like someone to talk to
I’m ok I don’t feel the need
I think it should be more easily accessible more funding and staff are also desperately needed
Conclusion – Mixed opinions, some just like to cope on their own, some would appreciate a support group, accessibility should be increased for sufferer and carer alike. Perhaps more funding to aid the carers with support too.

11 Let down
It can be hard as I don’t get asked how I feel by professionals when I have to attend Dr’s s appointment with my partner or family.
I just get on With it.
I prioritised my mum’s care so I wasn’t bothered about myself
Conclusion – these carers feel let down, abandoned and unimportant in the process.

12 Sat and talked
Got a puppy as a focus for us all.
I have no strategies for my self other than I have to be in control that’s the only way I can function.
I try and make them talk before things get to deep.
I can tell when something’s wrong as I know them both inside and out so as soon as I sense this I act on it straight away .
I tried reasoning and putting in a guilt trip
Physical restraints
Others methods just out of desperation
None
I have tried pretty much everything at some point
Diet and exercise are probably the valuable assets in my box.
Conclusion – orthodox and unorthodox methods are employed largely out of desperation. Talking. Diet and exercise seem to be the most effective tools employed.

I think we can safely say that this is an issue that at least requires investigation and I believe highlighting. This is not to detract from the plight of a sufferer, it is merely the acknowledgement that the carers need care too and cannot do this alone. Whether we start support groups or give access to counsellors something needs to change. I fear that the carers without acknowledgement or the instigation of support, could become a sufferer of perhaps depression, anxiety or perhaps worse themselves, as this can be a debilitating situation.

If you are resonating with this, I am with you. Please try to find someone to talk to that you can share the load with. Ultimately if your loved one recognises the issue and seeks help, be that medication, therapy, or forging their own path and coping mechanisms, I am positive that things can be peaceful, serene, calm and filled with love. They may still have ups and downs but don’t we all.
The extremes of the emotions are without a doubt an issue and it can pull you down with it like an undercurrent or a raging torrent of rapids. Navigating through these dangerous and often frightening scenarios is no easy task and you need to arm yourself with a life jacket of love and paddles of support with buoyancy aids of strength of character.

It takes someone special, strong and with unlimited kindnesses to cope with this kind of situation.
Remember you are amazing and an inspiration.

(The image is sun and thunderstorm depicting the extremes & turbulence)

This is potentially a very controversial topic to be writing about, but I feel it needs to have its own page in the process.

I have had my own experience of depression, suicidal thoughts and anxiety. However, the black cloud that enveloped me was a temporary state of my own reality. I do not have these tendencies on a daily basis and have forged my own ways of coping. I am an extremely positive person that had these feelings whilst being bullied at school and when I experienced extreme unforgiving pain following a road traffic accident, which resulted in suicidal thoughts. One of the coping strategies, found me putting pen to paper and writing poetry that can be pondered upon in published anthologies. My first piece of published work was at the meagre age of 12, I continued to write to expel the dark demons that encroached my mind throughout my teenage years. The irony is that when I am compelled to write I am stricken with negativity, fear and self hate, this however, seems to enable me to produce my best work. I genuinely find it difficult to write happy poetry that paints a wonderful picture.

I thought the best way for me to address this particular topic was by writing about it. It is my most comfortable medium to express my thoughts and feelings.

I have spoken to friends, family and patients about this subject and I noted a distinct pattern. Despite the amazing boost to the talking therapies and the encouragement generally to open up about the things that maybe affecting you, there is a section of our community that are affected by mental health that receive no help, no matter how much they talk about their issue. These people are the partners, the siblings, the sons, the daughters, the parents and the carers of someone struggling with the daily battle of depression, anxiety or other mental health issues.

Living with someone with these issues conjures a myriad of emotions for the bystander. I say bystander as there is very little you can do to help them. It can feel frustrating, debilitating and heartbreaking all rolled into one. The instability, the emotional roller coaster, the uncertainty of what each day will bring, whether they will be up or down. Whether they will be getting out of bed, whether they will be angry, whether they will be crying and inconsolable.

The worst part is having to watch them hit a spiral of self destruction and not ever finding the code word to break the spiral. Trying constantly to remember that this behaviour you are witnessing is not the real them, and the person that you love is always in there somewhere, even when they seem to be buried deeply under the layers of desolation and despair. When they say hurtful things and cannot explain why, remembering it is not their words but the hurt that has been done to them projected onto the one solid part of their life that they hope will be constant and not abandon them. I heard a girl on BBC radio one talk about her father being an alcoholic and her having to separate this into two people. Her Dad the fantastic man and her Dad riddled with the alcoholism monster. This is a fairly accurate description of how I try to focus myself, and how others seem to quantify the experience too.

I cannot begin to imagine what it must be like to live within this life of despair, and I am grateful for all the charities and movements that are in place to give someone direction and help, but in some ways I feel it is harder to be the carer. There are no charities to help the carer. If you go to the GP they don’t refer you anywhere as they can’t, there is no rescue ladder to help the helper climb out of their own enforced prison.

Every day is a struggle for both parties involved. I do not know what the answer is as yet, but I do know that we need to address this issue and as we encourage people to open up and talk, we also need to encourage support for the carer that is under extreme pressure.

If I bail and abandon my loved one I am ridiculed for not supporting them, if I stay with my loved one I endure a life of difficulty, hurt, pain, love, torment, accusation, happiness, delirium, euphoria and delight.

During this state they are unable to think of anyone but themselves due to the overriding and overwhelming debilitating emotions. Not capable of taking on the concept of another’s emotions. It is not their fault, they have diminished capacity for anything other than themselves. This negative drive may mean that as a carer or partner you may note the following-

anger
hate
fear
anguish
panic attacks
paranoia
self loathing
feelings of being a failure
a lower sex drive
a lack of desire to socialise
a lack of desire to participate
cancellation of social events
sleeping
lack of motivation
lack of enthusiasm
telling you everything in their life is awful
nothing is worth the effort
love
hyper-adrenalism
mania
Amongst other signs and symptoms.

Remember it is not them, it is something they are having to deal with, it is something that grows and manifests as though they are possessed. If they had cancer or MS you would be able to see the metamorphosis. This pupae is subtle and the butterfly never emerges without help.

I decided to conduct my own qualitative research on this as I am a scientist at heart and wanted to ensure that my friends and family were not just empathising with me. It was unlikely that quantitative research would be possible to conduct and we all know that it is much more difficult to formulate results with emotions and opinions but I was hoping that the views of complete strangers may help identify patterns.

I asked for volunteers to honestly answer a questionnaire that I had devised. The prerequisite was simply that they were or had lived with a sufferer of mental health issues. Age was not a distinguishing factor, neither was the type of relationship, nor the type of mental health issue. The questionnaire would be completely anonymous. All questionnaires were included. 50 participants responded. 50 volunteers contacted me to offer to help. The volunteers were gathered from twitter and Facebook. Any answers that were repeated were not listed separately.

Living with a mental health sufferer questionnaire

1 What is your relationship with the person that is suffering?
2 How long have you known they have had a problem with a mental health issue?
3 What help have they received?
4 What help have you received?
5 What help would you like to receive?
6 How does their mental health condition manifest itself?
7 How does it make you feel?
8 Do have support from anywhere?
9 Do you think a Facebook group would help?
10 Do you think you should have access to counselling?
11 How does it make you feel when the sufferer is considered but you are not?
12 What kind of techniques and strategies have you tried to either help the person or to be able to cope yourself?

 

Thank you for helping me with this questionnaire.
I have been living with someone that has a mental health issue for almost all of my life. First my father and now my husband. I am finding it to be a very isolated experience with little to no acknowledgement of how it impacts on my daily life.

If you have any further comments please add them on. All comments are welcome as this is a collation of information.

1 Daughter
Husband
Son
Mum
Dad
Step Father

Conclusion – anyone is affected

2 One and a half years.
19 yrs but they intensified about 10yrs ago.
My son 11yrs old when I noticed things weren’t right .
I first discovered my mum’s issues when I was about 8 years old around 31 yrs ago
It’s only in my later years I begun to understand my dads issues but I now recognise he had problems for many years prior.
From me being a child
Conclusion – there is a distinct longevity to the presentation of the condition.

3 Anti depressants and counselling.
Help from private counselling which I sorted as the NHS were taking months,
Help from mental health services when severe enough to be referred to the crisis team
Self referred hypnosis.
Had to fight for my son with the NHS for children’s mental health and then into adult mental health .
My mum was on and off section for most of my life in mental health institutions including the old and more modern hospitals and also under psychiatric help
None he still does not think he has issues
No help at all.
Conclusion – there appears to help if you are considered severe enough or in crisis, otherwise there is help if you can afford to pay privately. The support and help seems to be varied in effectiveness.

4 None
2 counselling sessions self referred and funded
I was spoken to by my mum’s psychiatrist a couple of times to check on me
Counselling, cognitive behavioural therapy, Nlp , Eft all self referred.
Self referred to a councillor to clean my head after all this years.
Conclusion – unless you beg your GP for medication you are looking at self referred counselling support only.

5 Someone to help me as a father understand her illness better.
Honestly , I’m unsure what I would want or need
I’m ok I just cope
Unsure sometimes I feel I need more help other times I feel ok with what’s happened to me!
Conclusion – help and support groups including people in similar circumstances may be helpful. The majority seem to just try to cope and get used to this way of existing.

6 Withdrawal
Spending money
Extreme high mood then low mood
PTSD
Depression
Mood swings-emotional/angry
Not sleeping
RLS
Intense sweating
Exercises more.
Goes very quiet
OCD, so this can become more intense when he is more anxious.
Anxiety
Doesn’t leave the house
Low mood.
Manic depression
Bi polar
Self harm
Multiple suicide attempts
Tried to kill family members
Violence
Seeing things
Hearing voices.
Beating family till on the floor and still kicking them.
Hurting family because of hate for no reason.
Conclusion – multiple presentations with varying levels of severity

7 Makes me feel helpless
Sad,
Frustrated
Tired
Numb
Sometimes I feel angry that I have to deal with it .
I have been on and off antidepressants just so I don’t feel my own emotions, just so I can function and go to work as I was the only bread winner at 1 point .
I felt like a robot, ground hog day!
Unworthy
Useless
Scared
It is like living in a prison
Powerless
I couldn’t help my mum and sister. I always thought if I could be a boy I might be able to help!
I don’t know what’s calm and normal family
What love is from a father.
Living with person like that is toxic and can destroy your thinking about life and yourself.
Conclusion – sadness, frustration, anger, tiredness, useless, unworthy, scared, powerless are common feelings experienced by the carer.

8 My wife
I have no support ( I don’t ask parents )
friends do not understand
Only from my step dad and younger step brother we all dealt with it together but I have to keep an eye on my little bro he has signs if depression and struggles with coming to terms with it …… They do say mental illnesses can be contagious
Not at this moment
Conclusion – either no support at all or family only

9 Sometimes
Anything which gives people help easily is always going to be good .
Probably wouldn’t help me but I would be part of it to offer support for others
Unsure sometimes I feel its good to share it helps others other times I just can’t face it
Conclusion – The common opinion is that even if a Facebook group didn’t help them, it may help others, but definitely having a safe place to chat with people in similar situations may be of benefit.

10 A group of other parents
Sometimes I would just like to release my thoughts so sometimes I would like someone to talk to
I’m ok I don’t feel the need
I think it should be more easily accessible more funding and staff are also desperately needed
Conclusion – Mixed opinions, some just like to cope on their own, some would appreciate a support group, accessibility should be increased for sufferer and carer alike. Perhaps more funding to aid the carers with support too.

11 Let down
It can be hard as I don’t get asked how I feel by professionals when I have to attend Dr’s s appointment with my partner or family.
I just get on With it.
I prioritised my mum’s care so I wasn’t bothered about myself
Conclusion – these carers feel let down, abandoned and unimportant in the process.

12 Sat and talked
Got a puppy as a focus for us all.
I have no strategies for my self other than I have to be in control that’s the only way I can function.
I try and make them talk before things get to deep.
I can tell when something’s wrong as I know them both inside and out so as soon as I sense this I act on it straight away .
I tried reasoning and putting in a guilt trip
Physical restraints
Others methods just out of desperation
None
I have tried pretty much everything at some point
Diet and exercise are probably the valuable assets in my box.
Conclusion – orthodox and unorthodox methods are employed largely out of desperation. Talking. Diet and exercise seem to be the most effective tools employed.

I think we can safely say that this is an issue that at least requires investigation and I believe highlighting. This is not to detract from the plight of a sufferer, it is merely the acknowledgement that the carers need care too and cannot do this alone. Whether we start support groups or give access to counsellors something needs to change. I fear that the carers without acknowledgement or the instigation of support, could become a sufferer of perhaps depression, anxiety or perhaps worse themselves, as this can be a debilitating situation.

If you are resonating with this, I am with you. Please try to find someone to talk to that you can share the load with. Ultimately if your loved one recognises the issue and seeks help, be that medication, therapy, or forging their own path and coping mechanisms, I am positive that things can be peaceful, serene, calm and filled with love. They may still have ups and downs but don’t we all.
The extremes of the emotions are without a doubt an issue and it can pull you down with it like an undercurrent or a raging torrent of rapids. Navigating through these dangerous and often frightening scenarios is no easy task and you need to arm yourself with a life jacket of love and paddles of support with buoyancy aids of strength of character.

It takes someone special, strong and with unlimited kindnesses to cope with this kind of situation.
Remember you are amazing and an inspiration.