I’m taking part in WEGO Health’s Health Activist Writer’s Month Challenge

Day 5 #HAWMC – If I could do anything as a Health Activist… Think big today! Money/time/physical limitations are no longer an issue. What is your biggest goal that is now possible?

Today I woke up on the realist side of the bed, or maybe it was the depressed side. I didn’t see any colour in the world. It’s hard to dream big when your body is not functioning well at a basic level. I’ve spent most of my life in the past, trying to fix what went wrong, and it’s only over the past year or so I’ve been able to spend my time in the now, accepting ‘what is’.

For lots of my friends with chronic illness – and that’s pretty much all of them, as they are the best, kindest and most compassionate people to be friends with – what’s happening in the now and being present with ‘what is’ is the most difficult thing in the world.

Thinking about this makes me think of their current issues and that gives me a way into this post.

1. I’d train more doctors, nurses, aides and therapists. Aside from their extensive training in state-of-the-art medicine using all the best diagnostic tools, I’d teach them to see with the eyes of compassion. Compassion training would be several credit courses of equal value to their medical courses. If they fail compassion, they fail medicine.
2. I wouldn’t stop there. I’d go into the field and give compulsory compassion training to all the doctors, nurses, aides and therapists out there. Some would need more than others. If they refuse the training, they would be fired. (I’m seeing that given unlimited time, money, health and energy, I would become a kind of benevolent dictator.) Doctors, like the internist I saw about a year ago, who say shit like, “Patient doesn’t appear to be in pain,” would be removed from the frontline of care instantly until their compassion was brought up to the minimum level.
3. There would be universal health care. No one would ever have to be afraid to go to the doctor, dentist, psychologist or psychiatrist, any kind of specialist, aide, or therapist because they didn’t have the money. There’d also be patient advocates as a matter of course, so no one would ever have to go to an appointment without an advocate if they wanted one.
4. There would be no such thing as waiting lists. There would be enough doctors and medical professionals that anyone who was in severe pain wouldn’t be waiting two or more years to be believed and then seen. The best medical minds would consider every aspect of the problem. They wouldn’t dismiss the patient as an instant hypochondriac. And if, after extensive testing, they couldn’t find the problem, they still wouldn’t dismiss the patient as a hypochondriac. They would give the patient access to all the same services as if they were ill, and they would give them the dignity and quality of life they deserved until they either recover or are found to have a syndrome that was indeed serious and deserving of all that care. And I wouldn’t care how long it would take or how much money it would cost because in this utopia there are unlimited resources.
5. At hospitals and clinics there wouldn’t be just one harried nurse on triage at emergency who didn’t have time for people with mental health challenges. No child or adult would be sent away because they were cutting or addicted to something or in the throes of a psychotic episode. There would be enough nurses on staff to keep them safe. There would always be enough beds. There would be extensive programs to give the patient an understanding of their illness and the treatments available, as well as help with basic things like eating, sleeping, self-care and medication. There would be extensive alternative therapy programs available, giving the patient access to things like cognitive therapy, mindfulness and meditation, yoga, qigong and art therapy. No person with a mental illness would be sleeping on the street in a doorway or under a bridge.
6. People who said shit like, “We live in a welfare culture” and “These people are lazy and should be sent to work,” about people with chronic physical or mental illnesses would be – you guessed it – sent to compulsory compassion training and made into better human beings. People with chronic illnesses who are abused or rejected by their families because they are chronically ill would have an extensive help and support network, and no matter if they woke up crying at 2 am or 2pm, there would be someone on the other end of the phone to talk to them about their problems. There would be a team of counsellors to work with them and their families and likewise, family members would be taught that their loved one, the chronically ill patient, was indeed deserving of all their love and compassion. Incidentally, this would be the case if their loved one was different in any way – whether they were LGBTQ or listened to weird music or slept all day and only got up at night and put in plastic fangs – but that’s a dream for another post. If, for whatever reason, a family could not be brought up to snuff with compassion training, I would create communities for chronically ill people, which would allow them to meet and create a family of each other. They would have staff on hand to help them with their wants and we would treat them as if they were recovering from being in a war, which is what some families are like. They would get all the support and care they needed until they were ready to move on to their own brilliant and beautiful lives without the people who were holding them back and holding them down. They would be valued and loved.
7. People with chronic illnesses would have work and occupational therapy designed to meet their abilities. Most people with chronic illness I know love the community of being engaged in meaningful work that makes a difference. They could choose whatever occupation they wanted, work whatever hours and to whatever level of engagement they were able, even if it was just an hour a week. No one would judge them because they weren’t working 60 hour a week at crazy-shit jobs that turned them into disconnected, abusive and you guessed it, uncompassionate people. They would be regarded as equals for doing whatever they could to the best of their abilities and they would be paid a good hourly rate for their labours. There would be no welfare or disability officer waiting to subtract $100 from their next support cheque because they earned $20. Instead, there would be support for and celebration of their achievements. Their own families or community heart families would be saying, “You did great!” instead of “You could have done more!”
8. There would be the same kindness and consideration available to caregivers, doctors, nurses, and other medical and support practitioners who got burned out and needed time off. They could have all the time and paid leave they needed because in my utopia there would always be another loving and supportive person ready to step up. In fact, in my utopia, dedicated caregivers would be recognized as heroes. They wouldn’t have to fight 24 hours a day for basic rights for their loved ones. That their loved one’s rights were taken care of was a given, and caregivers could focus on doing what they do best, which is caring. They would always have someone available at a moment’s notice to step in if they needed a day or a week off, or if they just wanted to go to the grocery story for some bread without having to worry about the safety and well-being of their loved one. They would have unlimited access to the funds needed to make their home accessible not only for the chronically ill person, but to give themselves a sanctuary where they could totally rest and de-stress and take care of their own health. There would be parades in their honour, and medals would be bestowed upon the most dedicated by the Queen, Prime Minister, President or whoever was in charge.

Alas, this is a dream, a fantasy. Chronically ill people struggle to be heard and recognized. People with mental illnesses sleep in doorways and under bridges. People have to fight welfare and disability agencies for the $100 that makes the difference between having food and warmth or having only one of them. Caregivers get burned out and have to fight 24/7 to get basic levels of care from harried doctors. Compassionate doctors are tired and burned out because there’s a doctor shortage and because their uncaring colleagues treat people with chronic illness like crap and they have to pick up the pieces. People get sicker and some of them even contemplate suicide because they are destitute, alone and unsupported.

Yes, it sounds awful, and for many it is. I don’t have unlimited time, money, health or energy. I don’t have the answers, except this one. Be kind – kinder than necessary. Be compassionate to the people you meet. You don’t have to give them things. Just give them a little piece of your heart. Take a moment, however brief, to see them. You may be the only person that sees them all day.

In the absence of endless time, money, health or energy, this is my dream.

“you may say
I’m a dreamer, but I’m not the only one”
– John Lennon

Many blessings,
Jane