Monday, 15 February 2016

How Much Help Is Too Much? Codependency in the Caregiving Relationship

It is possible to try too hard, from the mistaken belief that the more we do for someone the better we are helping them. This can leave us physically, mentally, and emotionally exhausted. Worse, we can lose sight of the essential purpose of support, which is to help someone help themselves.

Doing too much, too often, or inappropriately invites the other person to become dependent on us. This is disempowering, and if left unchecked can develop into an unhealthy codependency. No matter how selfless we imagine ourselves to be—and selflessness is neither healthy nor sustainable—being a supportive friend or caregiver can play to our needs as much as to the other person’s. It can feel wonderful to be needed, and if our friend’s illness is chronic we have set ourselves up with a supporting role for the long term.

Ask yourself the following questions.

  • Do you feel proud or protective of your role as a supportive friend?
  • Who decides how much help—and what kind of help—your friend needs?
  • Do you ever resent other people who want to help?
  • Do you ever worry that your friend might need your help less in the future?

Don’t be too hard on yourself if you harbour feelings like this from time to time. It does not mean you are a bad person, or unfit to support your friend. It does mean, however, that you need to be vigilant. Sharing is the best antidote to codependency. Begin by speaking honestly with your friend about what is going on for you. Talk about the things you are able to do, but also discuss setting healthy boundaries.

There may be others with claims on your time and energy: young children, elderly relatives, other friends, or a partner. You may be ill yourself, or have problems and issues which require your attention. There are also limits to your skills, knowledge, and competence. No one can tell you where the boundaries ought to lie, and they may shift from time to time. That is something you, your friend, and the others in your life must work out for yourselves.

Actively encourage others to play their role in your friend’s care, rather than trying to do everything yourself. Keep an eye on your health and well-being too. It can be exhausting to support someone with illness, and you may need your own support team from time to time.

 

Saturday, 13 February 2016

Newcastle Mental Health Day 2016 #NCLMHday

As I walked along Northumberland Street headed for Newcastle’s Mental Health Day event at Grey’s Monument, my mind went back more than two years to my first engagement with Time to Change, England’s biggest programme to challenge mental health stigma and discrimination.

I first registered an interest with Time to Change in November 2013, and attended a get-together evening at the Crisis Cafe later that month. I enjoyed the evening, but left feeling unsure whether I had the skills and experience to contribute to what Time to Change and the other organisations and individuals I had met were doing. This was no reflection on the warmth of the welcome. Rather, it was a voice inside me that told me I was not yet ready to engage fully.

At that time, Fran and I had been friends for two and a half years. Despite living on opposite sides of the Atlantic I’d supported her through episodes of mania and depression, and accompanied her virtually through a gruelling three month trip around Europe. We were co-writing a book to inspire others wanting to support friends who live with mental illness.

Keen to improve my knowledge and experience, I booked a place on the excellent Mental Health First Aid (MHFA) course, and later took the Applied Suicide Awareness Skills Training (ASIST). I learned practical skills, but more importantly I connected with people courageous enough to share what living with mental illness—or supporting people who did—meant to them. I shared my story too. I made connections, and new friends. When I learned about the Mentally Sound radio show here in Newcastle, I approached the organisers with our story, and was proud to be interviewed on air. Fran and I were also engaging with individuals and organisations in the mental health arena on both sides of the Atlantic.

I felt increasingly confident, but something still held me back. Every now and again a Time to Change e-mail would land in my in-tray, announcing some event or other. And I would read it, shake my head, and close it again. That voice in my head was still there, nagging at me. “Yeah, OK, you’ve done some stuff. Taken some courses. Bluffed your way onto a radio show. But you are still not enough.”

Not enough.

Most of us have heard that insidious voice at some point, whether from others or inside our own heads. It is the enemy of courage, of engagement. It is the voice of shame. I knew it wasn’t true. I knew there was a way to prove it wrong. But I didn’t know how. In January, Fran signed up to do an online workshop with research professor, author, and public speaker Brené Brown on courage and vulnerability. The class encourages you to identify your core values, and choose one or more arenas: areas in your life where you feel stuck, or where your impulse to be brave is repeatedly stalled. I decided to investigate my own life values, and choose my own arenas to work on. I chose Connection and Challenge as my life values. My arena: “To engage fully with local mental health groups.”

Within days, I heard about an upcoming mental health awareness event in the centre of Newcastle, to coincide with Time to Change’s annual #TimeToTalk campaign. I signed up as a volunteer before the voice in my head had chance to intervene. As I wrote in my diary, “Fear of engagement has always kept me on the outside, looking in on the arena. It is time to show up for my life.”

As I turned the corner into Blackett Street, I saw folk putting the finishing touches to the stalls and marquees gathered around Grey’s Monument. The weather forecast promised rain, but there was already a good turnout. As well as various Time to Change marquees, there were stalls for a wide range of local, regional and national groups, including Mind, Crisis, and Launchpad.

The first stall I came to was Men Tell Health, manned (pun very definitely intended) by the fabulous Gary Pollard who I knew through Twitter and Facebook. Gary and I met like old friends: manhugs very much the order of the day. I saw several other familiar faces. Angela Slater, Regional Coordinator for Time to Change was there. Alisdair Cameron from Launchpad, mental health blogger Aimee Wilson who was running the social media for the event, and many of the volunteers I’d met at the orientation meeting the week before. A short briefing from Angela and Alisdair, and the event was underway.

Our remit was to engage members of the public in conversation about mental health. This was utterly new territory for me, but I knew I wasn’t the only one volunteering for the first time. It was scary, but I felt fully supported. My first conversations were a little tentative, but I soon settled into things.

I felt most comfortable in the Activity Zone helping run the quiz. This was next to the sound stage, which at times made it hard to hold a conversation, but the array of freebies and fruit juice mocktails drew people in. Whether folk knew the answers or not, the quiz provided a great focus to talk about mental health, and I had some of my best conversations of the day there. I later spent time in the cinema marquee, which was showing a variety of shorts from Time to Change and other organisations.

Mental health covers a wide range of diagnosed—and undiagnosed—conditions, and lived experiences and opinions vary enormously. One very telling moment for me came when I happened to step back slightly just as the man I was talking with shared that he was diagnosed with schizophrenia. “That’s what people do,” he said. “When they find out. They step away.” I hadn’t done so because of what he said, but it brought the realities of stigma home to me in a very personal way. I was grateful to him, and told him so.

Some stories, whether of mental illness or the often-related issues of poverty, benefits, or housing, were undeniably hard to hear. But the atmosphere wasn’t sombre in any way. No matter the content, genuine connection is empowering if we are open to hear what people are saying. And there were moments too of sheer delight, laugher and merriment.

There was music from the Steel Pan band, the Making Waves choir, and acts including powerfully talented singer Jeffri Ramli. There was dancing in the street (and in some of the tents—a new experience for me!) And there were new friendships struck. I asked a few of my fellow volunteers if they’d like to contribute a sentence or two about the day. Here’s what they said:

The weather on the day was cold, wet and miserable! But although we were cold and wet, we were far from miserable! For me, the fact I was helping spread the word and stamp out stigma made me smile from ear to ear. I met some amazing people, both volunteers and public. The stories I heard and the helping people understand mental health, all while having fun and making new friends, can only mean one thing! I will definitely volunteer again!
—Gemma Morris
Saturday was special, not only because it was both Time to Talk and World Mental Health Day in Newcastle, but because I got the chance to be with like-minded people who accept you and don’t ever judge. There were lots of old mates and the opportunity to work with new people—like yourself, Martin. I love the buzz and chat, talking about well-being and being there making a difference. Can’t wait till our next village.
—Denise Porter
I was filled with excitement despite the rain and winds. I was lovely and warm seeing friends and making new ones during our discussions throughout the day. From start to finish I was happy and content. I felt we accomplished a lot as a team!
—Carol Robinson
It was excellent to see so many people enjoying themselves: volunteers, stall holders and indeed members of the public. Even though it rained nearly all day it didn’t dampen anyone’s spirits. Many meaningful conversations were had with members of the public throughout the day. The thing that impressed me the most was even though the Government are cutting Mental Health services on a daily basis we have proved that we can still make a big difference in a positive way to many people’s lives. I am so looking forward to the next event. A huge thanks to all involved and to all my new friends I met at the event.
—Steve O’Driscoll

I definitely intend to volunteer again, and recommend the experience to anyone interested in challenging stigma and discrimination. If you would like to volunteer, or want find out some more about Time to Change, you can sign up for free with no obligation on the Time To Change website.

Thank you to my dear friend Carol Robinson (right) for the photos, and to everyone involved in the event, especially Angela, Alisdair, and Aimee.

I can’t wait for my next time in the arena.

Marty

 

Nothing Left to Lose: Why I Write about Invisible Illness

The reason I write about invisible illness is because this is the biggest part of my world. The reason I share it on my social media, rather than only in my blog or in a closed group is because my biggest desire and fervent passion is for us all to talk about it outloud, upfront, in the mainstream. That is where it is spoken about least due to stigma and shame. Too many people have died from lack of talk, lack of connection, and lack of understanding. We who are ill have had to hide behind closed doors for way too long. Since I’ve lost everything short of my life I am no longer afraid. There is nothing left to lose but life itself. I am indeed a lucky one to still be alive.

Fran

 

Friday, 12 February 2016

The “How Are You?” Menu

When you ask me the seemingly simple question “How are you?” I have no simple answer. I find myself boiling down my three complicated, chronic, incurable illnesses to mood, fatigue, and pain to make it easier for you to deal with.

Sometimes I reply FINE. This is an acronym for Fucked up, Insecure, Neurotic, and Emotional. That way I can be gracious, and honest. The last thing I want to incur is worry, and upset you, because then I would have to take care of you. I have little energy for that. Over twenty years’ experience has taught me that over and over and over.

Understanding the insides of invisible illness is not for the faint hearted. Perhaps the following will help bring some clarity and understanding.

Here is the menu. Use it like a food menu where you pick and choose what you would like to have accompany you in your day. Know that not only is every day different, but these symptoms can change in a flash. Remember those of us who are sick don’t have a choice.

Choose your symptoms from the following links. We suggest three for each condition but you are free to overachieve. Perhaps your every meal could be a new symptom. Be creative!

Bipolar disorder ~ 16 symptoms.
Chronic fatigue syndrome ~ 17 symptoms.
Fibromyalgia ~ 16 symptoms.

Spend a week with various symptoms by choosing different ones day-to-day. You could set alerts so you don’t forget which symptoms you have.

At the end of the week, maybe you will feel competent answering someone who asks “How are you?” If not, you are not alone. Those actually living with these conditions have an even harder time because of our weakened condition.

Oh, and I haven’t even talked about medication side effects. Oh, and how about the “Hope you are well” sentiment?

Perhaps next time someone asks “How are you,” my reply will be “Living the Dream.” But I am too tired now to go down those roads. Time for a nap. Will I feel rested? There is a very good chance I will not.

Fran

 

Friday, 5 February 2016

Living from Afar

I often have to live from afar. It may be that I am too fragile for company or live events. The overstimulation could be disastrous. It may be that I have been removed from a relationship or even a group. They may have deemed me unfit for social interaction because of behaviors and dialog exhibited during periods of mental illness. ​Or I simply said ‘no’ one too many times.

Especially in these times I am grateful for technology and social media. Since I enjoy concerts I make my own using YouTube, Pandora, Soundcloud. I meditate sometimes quietly, sometimes with music, sometimes guided. I also use YouTube to quiet intense insomnia. Facebook is a haven for staying alive. It’s like Cheers. And you don’t have to have a drink or even get out of bed. Skype keeps me tight with my best friend who lives on the other side of the world.

Yes all these things can be addictive but only if you make them so. For me technology helps my heart grow.

Fran