A 46 year old man stands at the kitchen counter in his house staring blankly at the two bags of medicines he has just collected from his pharmacy.
Maurice – his heart full of regret; his head racing with anxiety.
Feeling unhappy, scared about his future – and feeling, oh, so alone.
Suddenly he is stirred from his thoughts as his four children – two teenager boys and twin 10 year old girls – come bounding into the house with their mom in tow, after being collected from school.
He smiles at them, pushes the dreaded bags aside and asks them how their day was. Starts helping his wife with the dinner and goes about answering the twenty questions his inquisitive brood dive into.
His wife smiles over at him – she knows he is not himself. Knows he is tired. Tells him gently to go upstairs for a rest and she’ll take over.
Surrounded by people who love him – Maurice still feels all alone. Feels like he is a failure as a father, a husband, a man. Feels like a burden. Feels tainted with a label he can never remove.
Maurice has just been discharged from hospital for the fourth time that year, and on top of his diagnosis of rheumatoid arthritis, he now has been told that he also has depression and chronic fatigue.
He tries to take all of this in. Absorb what it means for his life – his family.
Having to give up his job a year earlier due to his debilitating condition he has found himself in a never ending cycle of pain; an inability to move due to severe stiffening of his joints; a constant tiredness from lack of sleep and an anxiety that never seems to leave him, even when he does sleep.
Maurice chooses to never share his concerns or feelings with his wife. He feels she has to make up for the job of two parents; sometimes feels like he is their fifth child. He hates being a burden her.
He also knows that she can sometimes get frustrated with him.
She tells him often that he should try joining a local support group, go to counselling or try new diets that could help alleviate his symptoms. She sits up for hours at night scrolling through thousands of online sites with the hope to find new treatments that might help him.
But Maurice is not interested.
He just doesn’t see the point.
He feels it is what is and nothing can change that. And as much as he doesn’t want to be depressed, he really doesn’t know how to change.
This evening in particular though his wife comes up to his room with a cup of tea, a glass of water and four of his many tablets. She sits at the side of his bed.
And she starts talking. About her, and the children.
She tells him that while having rheumatoid arthritis is one thing that there may never be a cure for, his thoughts are something that can be changed.
Tells him that she needs her old husband back; that their children need him.
Reminds him that after having her twins that she too had suffered depression and knew the only way to get through it was by talking to a counsellor and also opening up to her friends. She had wanted to get better for her husband, and her children. And most importantly, for herself.
She tries to motivate him into seeking help.
Maurice turns away from her on the bed and says that he’ll think about it.
Knowing that he won’t do anything about it, his wife gets upset and tells him she doesn’t know how much more she can handle. That she loves him but is finding it hard to manage it all on her own. That she wants her old husband back. The husband that cracked jokes which often made her “belly laugh”; the husband that would surprise her by finding old movies from their early days for their “date nights”. The husband that would give her a little spontaneous cheeky wink showing her he is still attracted to her.
They both know they haven’t been intimate in at least six months.
She sighs, gets up to leave; leaving a little leaflet on the bed beside him.
Asks him will he at least look at it.
As she leaves, unbeknownst to her, Maurice’s eyes fill up with tears.
He, again, feels like a failure.
He turns slowly around and picks up the leaflet.
He is surprised when he finds that he is actually interested in what this leaflet has to offer. It describes a local service which helps people better manage their health conditions – including depression. It doesn’t include counselling nor does it include faddy diets or potential “cures”. It seems like a very practical course.
Maurice thinks about it.
Logically he feels if he could take away some of the daily tasks from his wife such as managing his medications or reminding him of his appointments, he could take some of the burden off her.
If he could smile again, and mean it, maybe he could make her belly laugh again.
He picks up his phone and makes the call. Decides he will try this option. Decides he just doesn’t want to live like this anymore. He doesn’t want her to live like this anymore either.
He gets up out of bed, goes downstairs and tells his wife his plans. She is taken aback. He sees a small glimmer of hope in her. Inside he starts crying again. He really does hope that this will work.
On the first evening of the course Maurice is really nervous. He is there along with eight other people; six women and one other man. He feels like he doesn’t want to go through with it. But his wife has dropped him off and she is now at home.
He must just sit it out today, but tells himself immediately he won’t go back again.
The introductions begin. Everyone starts telling everyone else about their conditions. When it comes to his turn he also tells everyone that he has rheumatoid arthritis and finds it hard to sleep – but does not have the courage to talk about his depression.
The facilitators had also introduced themselves. They are not health care professionals – but people who have also had various health issues. This surprises him.
They give an outline of the programme that will follow – they talk about how to make action plans, make decisions about their care, problem solve, manage medications, how to better communicate with health providers and how to recognise the symptom cycle – something that Maurice resonates with all too well.
On the tea break, Maurice gets talking to the other man on the course, Joe. He finds that Joe only lives a few kilometers away from his house – and Joe too had to give up his job as he has Multiple Sclerosis [MS].
Joe is also married and has grown up children – and after chatting for a few minutes, Joe admits he too finds he is a burden to his wife.
The course commences and Maurice learns that everyone in that little room are actually going through much of the same things as he. He had thought he was all alone but realised quickly that it didn’t matter what the condition was – the problems were all still the same for everyone.
After the first evening, Maurice says goodbye to Joe, and they exchange phone numbers – promising to contact one another that week.
As Maurice gets into the car, he leans over and squeezes his wife’s hand. She looks up and he knows that she is aware that he is saying thank you.
He feels for the first time in a long time, that there may be hope. He doesn’t feel so alone anymore. He decides to go back the next week.
The next five weeks fly by, and week after week, Maurice starts to understand that learning how to manage simple daily tasks can impact greatly on the way he thinks. The dark cloud starts lifting from his shoulders and he finds he is more motivated. He stays connected to Joe. They do their Action Plans together – going for a short walk, three days a week in the mornings when their wives are at work – they sometimes even change their plans when the weather is bad, or when they’re having a bad day and instead go to the local coffee shop or visit each others homes.
At the end of the course Maurice does not feel he is a “label” anymore. He understands that his condition is only one part of who he is, but it doesn’t define him as a person. He starts taking control of his medications and talks to his GP about reducing his anti-anxiety medications.
Decides that he might take up counselling after all.
His last Action Plan is to find an old movie and to have a “date night” with his wife. He gets into the car on the final evening of the course, looks over and winks at his wife. She smiles…from her eyes. She knows now her old Maurice is coming back.
So why has Maurice changed so much in such a short period of time – what are Self Management courses all about?
Well, I myself am a volunteer facilitator of Stanford University’s Chronic Disease Self Management Programme, which is just one of the many courses available – but one which I find extremely effective.
This course is designed to enhance regular treatment and disease-specific education such as cardiac rehabilitation, or diabetes instruction. In addition, many people have more than one chronic condition. The program is especially helpful for these people, as it gives them the skills to coordinate all the things needed to manage their health, as well as to help them keep active in their lives. The program does not conflict with existing programs or treatment.
The workshop is given two and a half hours, once a week, for six weeks, in community settings. People with different chronic health problems attend together. Workshops are facilitated by two trained leaders, one or both of whom are non-health professionals with chronic diseases themselves.
Subjects covered include: 1) techniques to deal with problems such as frustration, fatigue, pain and isolation, 2) appropriate exercise for maintaining and improving strength, flexibility, and endurance, 3) appropriate use of medications, 4) communicating effectively with family, friends, and health professionals, 5) nutrition, 6) decision making, and, 7) how to evaluate new treatments.
But most importantly, it is the process in which the program is taught that makes it effective. Classes are highly participative, where mutual support and success build the participants’ confidence in their ability to manage their health and maintain active and fulfilling lives.*
What I love about this course, in particular, is the fact that it is not disease specific, but more focuses on the needs – it helps people remove the labels of their conditions and focus on themselves holistically, as people. There are, of course, specific disease programmes available also but I feel these are best done after the general workshop, as these can help with the technical issues arising from managing medications, treatments or services specifically for conditions such as Chrohns disease, diabetes or arthritis, for example.
Carers can also attend these workshops, which I find most important – often the carer can suffer depression, isolation and anxiety too.
I highly recommend that all patients and carers be given the opportunity to avail of these courses, as recommended by health professionals, at the point of care. They are based in local communities, and many people, just like Maurice and Joe, get to meet new people who understand the difficulties of having a long term condition. It can be life changing for so many.
It can be life changing for a whole family. A whole community even.
When patients participate in these courses it can also be extremely beneficial for health professionals. They can save health services time, money and resources and by reducing depression or breaking symptom cycles, for example, this can reduce copious amounts of unnecessary health care appointments and the prescribing of many unwanted medications.
I for one, as a patient and carer, love being a facilitator of this programme – I see so many people come in looking scared, anxious and dubious – and then leaving just six weeks later smiling, hopeful and aware. (It’s also an extra little bonus when many of the participants give us chocolates just to say thank you at the end of the course – though not so great for the waistline I might add!)
There is something very special about helping others – you always learn something new yourself along the way that you can use in your daily life – and you make so many new friends too.
So to answer the question as the title of this blog suggested – Self Management courses are not about the paper they are written on – they are about the process in which they are delivered.
Self-Management is not about sickness – it is about holistic self care. It is about kindness. It is about community.
It is about life.
There are many courses available in Ireland, such as the one I facilitate with. Please go online or ask your health professional for further resources.
*Abstract [altered slightly] from http://patienteducation.stanford.edu/programs/cdsmp.html on the 27/08/2016
**Names of characters used are fictional – they just aim to help tell a story that many relate to