A Letter To Someone Just Diagnosed With A Chronic Disease

Shannon Harvey meditating

I’m writing this letter to you because I know how you feel. You may have just been diagnosed with one or more of the chronic diseases sweeping the world in what has been called an epidemic – heart disease, cancer, diabetes or an autoimmune disease like multiple sclerosis. Maybe you’ve suffered all your life with asthma, high blood pressure, arthritis, thyroid issues, sinus issues, gut issues, migraines, back pain, chronic fatigue, depression or anxiety.

 

I’m writing to say I know how you feel. I was diagnosed with an autoimmune disease ten years ago. I thought I was seeing a doctor to be prescribed medication or be told to put my feet up for a few weeks. Instead I was told there wasn’t any cure for what I had. This is a ‘rest of your life’ kind of thing. What followed was a seemingly endless cycle of appointments, tests and prescriptions followed by more tests, follow up appointments and different prescriptions.

 

Doctors almost always ran late. One specialist ran a minimum of two hours late every time I saw him. I would take half a day off work to see him for ten minutes. Another never glanced up from his computer screen to look me in the eye. I had waited months for the appointment and instead of talking to me, he spoke notes into a recorder for his secretary to write up as though I wasn’t in the room. I was just numbers on a screen; and because those numbers didn’t neatly fit the diagnostic criteria of illnesses in his textbooks, I was sent on my way with a ‘this might work’ prescription and told to come back in three months. No one in the conventional medical community offered me concrete actions or recommended steps that I could take for myself.

 

But I’m writing this letter to say two things:

 

  1. You are not alone. In fact more than one in two people will be diagnosed with a chronic illness in their lifetime according to the World Health Organisation. We are all in this together.

 

  1. There is hope.

 

There are many many many things you can do for yourself. These things do not involve wishing yourself well by saying ‘I am healthy’ a hundred times a day, nor does the answer lie solely in taking a concoction of herbs and supplements recommended by a well meaning alternative therapist, though I know sometimes they are useful tools in your kit. The answers don’t even lie in quitting your job, eating only organic food or cleaning out all the toxic chemicals from your house. While those actions may help, I have spoken to too many people who have followed them diligently and still remained ill to believe they are the only way forward.

 

The hope I offer lies in the latest research into mind body medicine – the scientific line of enquiry to understand how our mind and body interact to affect our health. I’m talking about evidence-based, practical steps that you can take that will make a huge difference to your health.

 

You will find many of the things you can do for yourself featured in posts throughout this blog and in my documentary The Connection. These steps are based on peer reviewed academic research coming out of places like Harvard, Stanford and Yale which has exploded in the last five to ten years with thanks to advancements in modern technology; research which is so hot off the press that even our doctors haven’t had time to absorb it; research linking the brain to the immune system; research linking the brain to the gut to the immune system; research showing the importance of group support in improving outcomes for sick people and how feeling part of a close connected community affects our biochemistry in a way that makes it a keystone in the foundation of health; research showing that stress reduction techniques like meditation can flip the switch on genes affecting disease and slow the rate of cellular aging in our body, and research showing that the interaction between a patient and a doctor can significantly alter the way a sick person’s body responds to treatment.

 

If this is the first time you’ve come across this blog, then here are three things you might like to consider to get started on a self-care program right away.

 

  1. Prioritise your health

 

In this crazy busy hectic world it is too easy to make health low on the priority list. Too often we put ourselves behind our jobs, our family, loved ones or friends who we see as being more in need of our thoughts, time and efforts than ourselves. Having a chronic disease forces you to rethink those priorities. You need sleep, movement and nourishment above and beyond anything or anyone else in your life. You need to come number one – no matter what.

 

  1. Change your relationship to stress

 

This is not about somehow finding a way to cut out all the stress in your life. The human stress response is as natural as our need to breathe air. This is about making use of stress as a force for good and learning to re-frame harmful chronic long-term stress. Here’s a meditation 101 if you want to get started on learning some proven chronic stress reduction techniques. Here’s an explanation of how to determine good stress from bad stress.

 

  1. Find your tribe and get support

 

As Dr. Dean Ornish recently wrote, the real epidemic in our culture is not just heart disease, cancer, or obesity; it’s loneliness and depression. One in ten Americans is taking antidepressant medication. Research has shown that people who feel isolated and alone are far more likely to get sick; and when you’re sick it can feel like no one in the world understands. Find a group of people who understand what you are going through. They may be close friends or family members you can reach out to, a local community group that meets regularly to discuss their illness, or even just a group who meets to discuss books, meditate or play cards. There are also wonderful online communities. Put your energy into the groups that uplift you; the ones that offer practical tips and problem solving solutions as well as their love, support and empathy. Don’t expect immediate connection with people either. Give it time. It may take months or years. But if you nourish them, they will nourish you in return. My favourite example of the power of community when it comes to health is the story of Roseto, which I featured in my film. Check out this animation which explains how a cigar smoking, wine drinking, meatball loving community came to have the lowest rate of heart disease in the US at a time when the illness was the country’s number one health concern.

 

 

I’m writing this letter because I want to reach people who feel they have run out of options. It’s been over ten years since a doctor told me he thought I had Lupus – an illness that meant my own immune system was attacking my body, and an illness for which there is no cure. I am happy to say that as I write these words I am really well and I am not on medication. While I’ve had setbacks along the way, my life is unrecognisable from what it was when I first got sick. My hope is that this letter finds you and gives you a starting point from which to start your own evidence-based health deep dive. I can’t promise all this will make you live longer. But I can promise, you will live better.

 

Wishing you wellness,

Shannon Harvey

Director, The Connection

 


Learn more about the mind-body connection and how it affects your health, including remarkable stories of people recovering from chronic disease. Watch the first 15 minutes of the feature documentary ‘The Connection’ for FREE.

  • Enrico Tigani

    google translated: I see no way out.
    since i leaf college (1998) noticed that something was wrong at the start.
    I could not make social ties and the work I was doing, helped not whit it.
    Find a hobby succeeded but soon i forgot why I did it.
    and didnt found what I was looking for. (didnt knew I was looking for)
    by my own doing, I lost my girlfriend ('08) (see her more as a friend at the time)
    a few months later mn job too (due to change in character)
    From then on it went downhill with me,
    i tried Jobs but that hole I couldnt filled. (not knowing wa hole it was)
    having lost self transhumance rating, lonely, hopeless, helpless,. . (Neurotoxic)
    tried searching but every time I lost ('09)
    later it was too much ('09)
    my back and my legs got stuck forests not move forward. (what ever i tried )
    I constantly tried to push it and I forced it
    with damages due later I got a the disease (label) (July '09)
    since I am aware of it, it is going better.
    doctors say 'is the result of follow-up and we were quick'
    so while they do no more than 20min. / Year at me, asking how it goes,
    an MRI, and constantly insist that what they prescribe
    will not make it better.
    When I tell them that things are improving, they say it will be the means.
    But it's more better than just relapses,
    it goes sometimes better than in 2009.
    So where do I have to be a little more serious succession?
    to call it holistically.

    ooh yeah they always will make me believe that MS was longer their than my psy issues. but I always had this issues, it just at a poin got to much.

  • Alfred Arvidsson

    Dear Shannon,

    I'm so happy that you're feeling better in all the days ahead. :-)

    One thing that could help in explaining on how the physical body and the "emotional body" (for lack of better "abstract" words") is interacting with each other, is to ask people to hit themselves with a hammer on their thumb.

    Then they will know that their physical body relates to how they are feeling.

    Then ask them to try to remember the last time they were really nervous or in Love.

    They felt it in their stomach, right?

    Then they too will know that their emotions affects their physical body.

    End of discussion. :-)

    After that, don't ever let them disregard of this fact.

    :-)

    In Love and all the best!

    Alfred

About the author: Shannon Harvey

Shannon Harvey is a journalist and producer who was diagnosed with an autoimmune disease when she was 24 years old. Although doctors meant well, none could offer her a cause or a cure. Since then Shannon has been researching the latest scientific research linking her mind and body to health outcomes. Nearly 10 years have passed since her diagnosis and today Shannon is well and not taking medication. Shannon has worked as a television, radio and online journalist and producer and has a Master’s degree in Communications. She worked for the ABC and Fairfax before starting her own production company, Elemental Media. Shannon is the director of the feature film The Connection.

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