Life After Diagnosis: Learning to Live Well
It is possible to lead a happy and satisfying life in spite of the ups and downs of disease.— Susan F. Mcdonald
From Diagnosis to Dedication
Form diagnosis to dedication (to living well) took me 8 years. In 2009 I was diagnosed with rheumatoid arthritis, a chronic illness where the immune system attacks (and ultimately disfigures) the joints and even the body's organs. Prior to diagnosis, I was a healthy individual who never smoked, maintained a healthy weight, exercised and ate well—not the typical disease profile.
My healthy habits were great for my body, but I was under a lot of unchecked psychological stress which led to anxiety and insomnia . . . with a toddler . . . a marriage on the rocks . . . and a demanding full-time job.
After my diagnosis, I found myself in survival mode—sometimes my jaw (joints) would be so swollen I could barely eat. Going to the bathroom and getting dressed was a big deal. Night time was no picnic either with all the pain.
After nearly three months and plenty of immunizations later (prep for being on immunosuppressive drugs), I was able to take an oral steroid to help jumpstart my body again. I felt better on the steroid, but it was a band-aid. However, the other long-term medications came with their own list of awful side effects.
Navigating medications can become a full-time job. Advocating for yourself as a patient in a convoluted system of monetary hierarchy (pharmaceuticals) is as tiring and frustrating as the illness itself. I was stuck in "diagnosis mode" for too many years now that I look back on it.
There are many systems and solutions to getting well. After a diagnosis, we often let the doctors lead the way, but this is our body; our life. Doctors are only part of the equation and most only deal with our illness, which is fine if you only identify with being ill.
The last two years I have dedicated myself to wellness and learning to live my best life with a chronic illness, from food solutions to meditation and energy medicine.
After a diagnosis, dedicate your life to wellness, not illness.
Living Ill and Living Well
We often think of ourselves as either well or ill so if you do become ill, your sense of self, and it seems your entire world, can come crashing down. You almost immediately identify as ill, that is, after you've gone through a period of shock and/or denial after your diagnosis. But don't accept your ill fate just yet!
In the year before my diagnosis, I was getting bothersome pain in two hand joints, but it wasn't until I got my diagnosis that no sooner was I practically unable to walk- that same week! Coincidence? Probably not!
I made the mind-body connection as I began to uncover how the mind has a lot to do with disease and wellness.
The first belief to change is that you can't have illness in your body and also live well or be well in any way. This is untrue. You can live well and still be ill. The mind and body are complex systems. 100% of us is not broken . . . or ill. We have well-functioning aspects and not-so-well aspects. A diagnosis is not an open and closed case.
Kris Carr, best-selling Author and Wellness Advocate, has lived with a slow-growing cancer for over ten years. She revamped her health with a multitude of mind-body techniques to supplement standard medical treatment.
Self-Care is another aspect of wellness. You are either caring for yourself or you are not. Which is it? Determining what is right for you opens up a whole new world so that you can get to know yourself- it's all part of practicing wellness rather than illness.
Things you must learn about yourself:
- how you prefer to relax. What helps you relax?
- how you receive love. What makes you feel loved.
- what you need to feel supported. How much support do you need?
- how you react to current situations because of issues in your past.
- Can you identify any bad patterns in your life?
The body is the most obvious place to start when you are ill, but what people forget is that you must be in the right mindset to implement sometimes restrictive eating programs and finding physical movements that match your ability and pain level.
After my diagnosis I searched for the latest diet craze related to disease and illness at the time, which was gluten-free. Almost a year on this diet and nothing!
Later I was tested twice for food sensitivities and I had no intolerance or sensitivity to gluten. Each person is unique. Diets never account for that! In fact, the tests showed I was intolerant to healthy foods like sweet potato and blueberries.
I followed the "food is medicine" path for many years to no avail. I was mostly confused with all the suggestions and diets. If you take the food route, there's only one rule to follow: Eat whole foods; foods that are not packaged. This has had the most impact! Everyone, no matter your ailment, feels better eating whole, unprocessed foods.
The problem with following specific diets is every diet out there has a row of packaged food in the aisle at the grocery store whether you are paleo, vegan, or gluten-free. If you fall for convenience, you'll be led to the packaged foods. It's so ironic that so-called healthy diets have convenience/packaged foods. The only diet is the non-packaged one, but how easy is that to market?
The only way to eat is non-packaged and non-processed foods, but how easy is that to market? Instead people opt for diets like vegan, paleo, or gluten-free, which often lead them to convenience foods marketed under specific diet names.
A Tip for Identifying Energy-Rich Food
There's a technique in energy medicine that can help you "test" foods on yourself by holding the food (without packaging and closest to its natural form as possible) just under your belly button, standing feet width apart, and take a nice deep breath in. Let loose. On the exhale, notice whether your body moved forward or fell a little backward.
If you moved forward on the exhale, the food is compatible for your body. If you toppled backward a little, the food is not right for you.
The time you spend thinking about your illness or ruminating over it is unnecessary time spent living unwell.
When something is wrong with the body, the mind is also involved. This mindset is hard to grasp as most health/medical science is based off the western medical model and dualism (the idea that the mind and body are separate entities).
Likewise, when something affects the mind (depression and anxiety) the bodily systems are involved in some way too. Anxiety and depression have been known to be linked to the gut and the foods we eat.
We can't escape the mind-body connection whether the illness origin in our mind or body. What role does the mind play in physical illness?
Your body physically reacts to stress and many emotions and thoughts. Stressful thoughtscan raise your blood pressure. Poor emotional health can wreak havoc on your immune system...and those are just a couple of basic examples.
It's great to think of the mind and body intertwning, because sometimes we can't stop long enough in our fast-paced lives to take note of our emotions and stress levels, but we may happen to notice more upset stomachs lately or heart palpitations- this can be a good clue we're mentally and emotionally overloaded and need to take care of ourselves for a period of time.
If we pick up on clues from our mind, we can also help our body and symptoms associated with illness. In essence, we have two routes to wellness.
Are you living with an illness?
I know someone who began a rheumatoid arthritis blog to encourage those with this chronic illness. One year later, it had gained so much popularity yet she decided to end it.
She stated that too many people used the platform to highlight the negatives about their illness; they were not using it as the inspiration she intended it to be. There is so much support for being ill that we forget wellness is the goal. People were not using the blog to discover ways to live well. They were not using it to extend wellness to each other. She hopes the future of living with an illness can largely become one of sharing how to live well with illness.
Yes, we should be free to talk about our illness and have unconditional support, but the way we talk about it speaks volumes about whether we are the illness or a whole person (mind and body) who happens to have an illness that is only one part of us.
Learning to live well means leaving behind the old definition of yourself as your illness. Begin by reaching out towards a wellness solution and a wellness mindset:
- meditation and guided meditation
- yoga, tai chi, qi gong.
- visual imagery
- energy medicine
With intention, you can be someone who has a fresh perspective and pays attention to your mind and body—how they are deeply connected in your wellness journey.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.