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caregiver support

In Sickness and in Mental Health


In Sickness and in Mental Health

I think most of you know me as @carersvent. But my real name is Samantha and I became my husband’s carer back in 2011 after the physical health problems he had been hiding from me for years finally became too much. He suffers from Chronic Pain, ME, Functional Neurological Disorder and early onset Arthritis. The list of symptoms go on and on, but after constant pain, these cause him to fall, have dizzy spells, muscle paralysis, muscle spasms, seizures, etc, etc.

What I didn’t realise was that he was also hiding some severe mental health issues too. 

I’d always known that, like myself, he struggles bouts of depression. In fact in 2004 he left his job as Senior Store Designer for a well-known supermarket after what I can only describe as a mini breakdown. At the time I thought it was just the pressure of his job had got to him. Little did I know that his depression was far more severe than that and he was struggling with thoughts of suicide. 

Within weeks of becoming my husband’s carer it was clear to me that it was more than his physical health, but also his mental health that he was having problems with. I’ve always thought of my husband as being very strong, confident and having a larger than life personality, but I had also seen another side of him where he would verbally attack me (I will talk about this more later).

So it took me by surprise when my husband started having major panic attacks! I don’t know how, but I somehow pushed my own surprise, fear and emotions aside and just took charge. It wasn’t really a conscious choice to become his carer, it was just what I did without thinking as there was nobody else.
I think the most extreme example of him having a panic attack was at his ESA Assessment, My husband went through what can only be called a range of emotions, which included him trying to harm himself, crying, screaming, shouting, laughing and being terrified. To me he always looks like a lost child when he gets like this. It does shock me seeing him like this, but I simply have to put that aside and take care of him.
When he gets like this I usually talk to him in a calm and reassuring manner and tell him “I won’t let anyone hurt you”. If you saw me doing this you’d think I was talking to a child and not a grown man. It’s sad how mental health can change someone you love so much, but you have to remember that it should never define them. They haven’t chosen to be this way.
My husband also suffers with severe anxiety and when it gets really bad he will harm himself, either by scratching his arms or bashing his head. I do my best to stop him hurting himself but, unfortunately, this can sometimes be difficult.

Whenever I have to take my husband to appointments I have to watch him constantly for signs of anxiety, panic attack and self harming. As if that wasn’t enough, he also suffers from non-epileptic seizures, so I also have to watch out for signs of those too…

I’m sure you’d all agree that trying to cope with all that is enough in itself, but my husband also has a very dark side to him. This is something I have had to deal with ever since I’ve known him (nearly 20 Years). He suffers from what we believe is Intermittent Explosive Disorder. We call this part of my husband Rob. This angry, arrogant person is the complete opposite of my husband. He’s very aggressive, verbally abusive and always wanting a fight. He never listens to reason and is very good at seeing your weak points and turning them against you. He’s the most spiteful person you will meet. He can be violent, like hitting walls, bashing furniture and throwing things (like cups and glasses at walls, etc), although I should make it clear though that he has never and never would hit a woman. It can be like flipping a switch, but you never know where the switch is or if it will trigger anything.

I would honestly have to say this is the most difficult, frustrating and confusing part of any of my husband’s mental health problems I have to deal with. Unlike his anxiety and panic attacks which I can usually deal with, this darker side of my husband is something I really wish I could just walk away from … but I can’t.

My husband was diagnosed with the Cluster B Personality Disturbances with Rage Control issues. Basically this means my husband is not constantly like this, but flips in and out - which sort of makes things difficult for both of us to cope with to say the least!
Yes, knowing my husband has Cluster B explains some of his problems but not all of them and having a label on it doesn’t make having to deal with it any easier. 

Cluster B Personality Disorder includes:-

Antisocial Personality Disorder: characterised by an ignorance of the entitlements of others, the absence of empathy, and (generally) a pattern of consistent criminal activity.

Borderline Personality Disorder: extreme ‘black and white’ thinking and long term unstable emotions – particularly when involving relationships, identity and behaviour. These feeling can lead to both self-harm and impulsive behaviour. 

Histrionic Personality Disorder: attention seeking behaviour that often includes inappropriate seductive conduct and superficial or inflated emotions.

Narcissistic Personality Disorder: characterised by the consistent need for praise and admiration and a belief that they are special and ‘entitled’. Extreme jealously, arrogance and a lack of empathy are also usually present.

Since 2011 my husband has been seen by 5 different psychiatrists (including 2 neuro-psychiatrists) and 3 psychologists, some of whom said they couldn’t make a full assessment of my husband because of his rage control issues. But they have suggested that my husband also has “prolonged” PTSD - which if you saw what my husband has been through does make sense (since he was a kid he’s had close friends die, his 1st marriage broke down, several near death motor bike accidents, etc ….). 

So, how has all this affected my own health/mental health? Well I’m on medication for anxiety because I have stress induced migraines. I have also developed something called Vasovagal Syncope, which basically means if I get too stressed I can pass out. I also suffer with depression and OCD, which gets really bad when I get stressed out.
I have also been diagnosed with Fibromyalgia, which I am currently not even being treated for, which is frustrating. I also experience hallucinations, which I’ve been told are caused by stress as well. Unfortunately with the life I have there’s no easy way to have less stress in my life…. 

I do struggle to take care of my husband, especially with the mental health conditions and I do sometimes wish someone else would take over. Then I feel guilty for wanting a normal life and I also ask why all this happened to my husband!? Yes, it’s difficult for me, but just imagine being my husband having to deal with all those different parts of himself and struggling to keep the dark side of himself from coming out and sometimes it will come out and there’s nothing my husband can do to stop it. He then feels all the guilt for whatever he said and did (he doesn’t always remember) … and all this on top of his physical health problems. He is basically having to battle with himself everyday and some days he doesn’t win. 

Last year, after being bounced around psychiatrists and psychologists (because all his physical problems are apparently in his head!), we were eventually given some couples therapy. Why? Because being my husbands carer and having to deal with his physical and mental health conditions has put a tremendous stain on our relationship. We’re both grateful we received this, but my husband desperately needs help with his rage control issues. We were told to contact Mind, but unfortunately they no longer offer help for this. 

So what next? I really don’t know … but what I do know is that my husband needs some professional help with all his mental health conditions, but sadly I don’t think he’ll ever get it on the NHS. 

Sometimes I look at my husband and don’t even recognize him because of what his mental health has done to him. If he has a good day I get a glimpse of the man I fell in love with, but unfortunately those days are very few - which is sad and makes me want to cry because I want my husband to be the way he once was …



10 Ways To Support A Friend With Mental Illness No Matter Where They Live


10 Ways To Support A Friend With Mental Illness No Matter Where They Live

“My computer is three feet from my bed. When I can’t make it that far I take my laptop to bed with me. If I can’t sit up I use my phone. I guess connection is important to me.” (Fran Houston.)

Connection is important to us all, but those who live with mental illness can find good connections in short supply. Changes in mood and behaviour can put relationships under strain, leaving people feeling vulnerable and alone precisely when they need help the most. If you have a friend who lives with mental illness you have the choice to buck the trend. Be the one who doesn’t back away. With the internet, distance needn’t be the obstacle it might appear. I am caregiver for my best friend Fran who lives with bipolar disorder three thousand miles away in the United States. Here are ten ways you can be there for your friend. You really can make a difference.

1. Do what you can

Distance means there are things you can’t do. You can’t give your friend a ride to appointments, fetch groceries or call round with a hot meal. You can’t hold your friend’s hand or give them a hug. Focus on what you can do. Play to your strengths and what your friend needs. (Hint: if you’re not sure what your friend needs - ask!) If you’re good with the internet perhaps you could help your friend find information online. That might include researching your friend’s condition (see #7, “Get educated”) but think outside the box. I’ve helped Fran plan trips abroad, book hotels when she’s traveling with limited internet access, and even acted as an emergency GPS service to help her catch a flight! Are you good at organising? We share “to do” lists and keep Fran’s appointments, trips and meetings on a shared calendar so we’re both aware of what’s coming up. I also remind her to take her medication each morning but not everyone appreciates being prompted like this, so ask first. Illness can get in the way of communicating effectively. When Fran is manic her writing tends to become rambling, “poetic”, and hard for others to follow. I act as a safe audience, proof-reading important letters and emails and helping Fran present as clearly as possible.

2. Be there

Practical help is important but your presence and commitment are the most valuable gifts of all. As a caring “internet friend” you can be there when it might be inconvenient for local friends and family. I may not always be free to chat or talk immediately but Fran knows I will never ignore her call or turn her away. Such trust is powerfully reassuring, valuable and stabilising.

3. Be vigilant

Being in regular contact puts you in a great position to detect changes in your friend’s behaviour or symptoms which might suggest things are moving in an unhealthy direction. Your friend is allowed to have a bad day - or a good one - without that necessarily implying anything dangerous so don’t leap to conclusions. Share what you’ve noticed, though, so your friend is aware too. Vigilance is a team sport!

4. Be a team player

You have a unique and valuable role to play but you can’t do everything. Allow others in your friend’s support team to do what they can do best. That includes other friends and family, professional and clinical specialists. With your friend’s permission consider introducing yourself and exchanging contact details. I carry details of Fran’s doctor, psychiatrist and care manager at all times, as well as some of her close friends. I’ve never needed to call them but it is good to know that I can.

5. Use all the tech

There is more to being supportive than picking up the phone when your friend is in crisis. Technology is wonderful! Use it creatively to grow a relationship rich in shared experience. Email, social media, instant messaging, SMS (text) messages, voice calls and webcam - each has its place and unique flavour. Mix things up a bit. If you normally hang out on social media try emailing for a change. If you always webcam from your study at home, try calling from your phone next time you’re in town or at the beach. Invite your friend to do the same. Share your worlds as well as your words. And don’t ignore “snail mail”! A handwritten letter or greeting card is a tangible token of your caring relationship. (Steer clear of “Get Well Soon” cards unless you are sure how that message resonates for your friend.)

6. Have a plan B

The thing with technology is… it doesn’t always work! Have a backup plan for when either of you lose your internet connection. Phone calls and SMS (text) messages can be expensive, especially if you live in different countries or are traveling. However, they can be reassuring. In 2013 Fran crossed the Atlantic from New York to Southampton on the RMS Queen Mary 2. The ship’s internet service was too expensive for Fran to use but I sent a text message each morning and night (normal international rates on my tariff) which let her know I was thinking of her.

7. Get educated!

Be the person who takes time to learn what your friend is going through. Research your friend’s illness or situation online, check out “friends and family” books if you can find them, and read books and blogs by people with lived experience. Look for online courses, and workshops such as the excellent Mental Health First Aid (MHFA) course which is taught around the world. No book or course will tell you what it’s actually like to live with illness but they help you appreciate what your friend has to deal with. Fran is the expert on how bipolar disorder affects her personally but I probably know more about the disorder in a wider context. Together, we make a formidable team!

8. Listen up

Try to resist the temptation to leap in with suggestions and “fixes”. There are occasions when practical help is appropriate (see #1 “Do what you can”) but sometimes what your friend needs is a safe space to share and explore what is going on for them. Treat such trust with respect and make sure you both understand what is happening. You are called on to withhold judgment while your friend talks openly about their thoughts, feelings and situation. You don’t get to judge them and it is down to you to handle whatever you hear. It’s not about you. Worry helps no one but if you are concerned for your friend’s welfare or safety discuss that with them, and engage other help if you feel it is necessary (see #4, “Be a team player”).

9. Don’t forget yourself

Being a friend to someone who lives with mental illness is deeply rewarding but it’s not all “sunshine and rainbows” so give thought to your own support needs. Don’t be a martyr! If you are struggling be honest about it so your friend knows what is going on. That might be all you need - a caring relationship works in both directions - but your wellness plan might also include extra time with family and other friends, hobbies, a visit to your doctor… whatever works for you. You might feel a bit guilty. After all, you’re the “well one” and your friend has far more to deal with than you do. But well or ill, we all wobble. We all need to take care of ourselves, and we all need help sometimes.

10. Enjoy yourselves!

Remember to make time for life’s simple pleasures. Not everything has to be about illness. You may be far apart geographically but with a little imagination there are lots of ways to share quality time. Take turns choosing a book and read to each other over the phone or webcam. Have a private music concert or get some popcorn in and watch a movie together online. Fran and I recently watched the Preakness horse race using a combination of my PC and her phone, laptop and TV. It was a great race and lots of fun!

I’ve shared some of the ways we’ve have found to bridge the geographic distance between us. Whether your friend lives on the other side of town or the other side of the Atlantic, you can help them best by keeping in touch. Keep talking. Keep sharing. Use technology as creatively as you can, because ultimately miles cannot separate us if we dare to care.

About the author

Martin Baker (“Call me Marty”) graduated with a First Class Honours degree in Pharmacy from the University of Bradford in 1983 and completed three years postgraduate research at the Parkinson’s Disease Society Research Centre, King’s College London. Certified in Mental Health First Aid, he is committed to developing his skill set in the mental health arena. He took the internationally recognised Applied Suicide Intervention Skills Training (ASIST) course in July 2014. Recent training includes ‘Beating Bipolar’, a web-based course developed by Cardiff University, and eSuicideTALK, part of the most used and widely recognized suicide prevention-intervention training in the world.

Marty is a current member of the National Alliance on Mental Illness (NAMI), The National Association for Mental Health (Mind), and Bipolar UK. He is a registered Champion of the Time to Change anti-stigma campaign and a member of Stigma Fighters and the NoStigmas Project. Marty has family experience of bipolar disorder and depression and is primary support and caregiver to his best friend Fran Houston.  With Fran he is writing a book about how to be a good friend when your friend lives with mental illness. Marty lives in England and has worked in the computing industry since 1993.

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