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January 22, 2014

What to Do When You Receive a Diagnosis.

Warning: naughty language ahead.

In my case, it began with a lump that I found in my neck while gathering my hair into a pony tail.

For others it might be strange bruises flowering their thighs, a persistent, aching fatigue, pain, stiffness, falling, forgetting. A million things can go wrong with our bodies, even when we take care of them.

I went to a walk-in clinic to have it checked out, fully expecting them to send me on my way with a joking diagnosis of hypochondria. But they didn’t. They sent me to the hospital.

There were biopsies, tests, specialists, blood work. We waited to see, then poked at the lump some more until years later I had a real diagnosis—toxic adenoma. I always thought it sounded like something that would grow under a rotted log in a swamp, not in the throat of a healthy, young woman, but there it was: a new part of me that was making me sick.

More years passed, more labs, radiation, pills. The tumor’s gone, but new symptoms popped up in its place and I still don’t have a definitive answer other than that I have some kind of autoimmune disease and somehow it’s all related and eventually they’ll give it a name.

Unnamed though it is, the illness still exists and I’ve come to accept it, manage it and live my best life even though the condition is a part of me.

Receiving a diagnosis of a chronic and/or serious illness is one of the most terrifying, stressful things that can happen. The news is devastating and as an individual plods through the stages of grief (denial, anger, bargaining, depression and acceptance), they mourn the loss of their expectations for a healthy body and the things they planned to do in it. At the same time, they’re overwhelmed with fears of pain, death and the unknown, floundering in a vortex of questions that need answering right now.

So what do we do when we or someone we dearly love receives a diagnosis?

Personally? I freaked the hell out.

Big time. Yup. Sobbing, crying, hyper-ventilating—all that, which may not have been the ideal response, but it was my response and it was okay, and when I stopped and caught my breath, I was still scared, still trembling with fear, but I began to manage my health.

So go ahead and freak out for a bit, then come back, breathe steadily and make a plan.

Assemble a Comfort Team

A comfort team, as corny as that may sound, is key to the well-being of a chronically or seriously ill person. They are a support system of positive loved ones and professionals who respect the needs and wishes of a sick person. They help, listen without judgment and are committed to creating a healing environment.

Everyone else is out. A diagnosis is an excellent time to clean house.

Pessimists, cynics, addicts, manipulators, just plain assholes? Time to go. Negativity is the enemy of wellness. If you are dealing with the emotional and physical toll of a medical condition, you don’t need a bunch of downers around sucking away what little energy you have. That energy should be devoted to healing and comfort, not dealing with drama.

Become an Expert

What we don’t know and don’t understand scares us. Learn as much as you possibly can about your diagnosis. Become an expert on it. Read articles and books by specialists. Look for memoirs of survivors and see what their experiences were like. Research and then contact the top doctors who specialize in what you have. Scan the New York Times Health section daily in case there is news on your condition. Read medical journals.

But Learn to Discern

When researching, the first place everyone turns to is the internet, but George Washington once said “You can’t believe everything you read online.”

You know, things like misattributed quotes, wacky conspiracy theories, nut jobs on message boards? Absorb only the information you read from valid, accredited sources and professionals and take the rest with a grain of salt, considering the context. There are some crazy folks on the Internet who write all kinds of foolishness and taking their words too seriously could be harmful or at the very least unnecessarily frightening. This happened to me when I was pregnant and read way too many horror stories of labor and delivery on Internet forums.

See a Nutritionist / Dietitian

Food is medicine.

Our bodies need the proper nourishment, especially when they endure surgeries, treatments and medications. A nutritionist can design a specialized diet suited to an individual’s specific needs and condition. An ideal diet can promote healing and help to alleviate symptoms. Since I was a teen, I suffered with painful and embarrassing IBS symptoms that doctors were never able to fix. When I saw a nutritionist and followed the diet she prescribed, my stomach problems completely disappeared without medication. If I slip up, the symptoms come right back. It’s that dramatic.

Receive Healing Massages as Often as You Can Afford

Very few things can provide the immediate, healing relief of massage. According to a friend of mine who is a massage therapist dealing with many chronically ill patients, massage therapy “helps relieve physical pain, anxiety, fatigue and depression. Also, it can augment the effects of medication while stimulating the release of endorphins for pain relief.”

She explains that “nurturing touch gives comfort which can help ease overall discomfort or suffering.” Massage stimulates the body’s natural healing response and helps get rid of toxins… Makes total sense to me.

If Possible, See an Allergist

Some diseases are actually caused by undiagnosed allergies and others conditions can be exacerbated by them. My rheumatologist sent me to an allergist to rule out food and environmental allergies that could be contributing to my autoimmune issues and I found it to be a valuable experience in my journey towards good health. In my case, testing revealed that, hooray, I had no allergies but I don’t count the testing as a waste of time because it gave me peace of mind. I know many other people though, who turned out to be highly allergic to things they were eating and encountering on a daily basis and when they finally knew what was wrong and could eliminate these allergens, they felt a lot better.

Attend to your Mental Health Too

Good health is all about balance. A diagnosis will trigger anxiety and often depression. See a therapist who can help you work through your emotions.

Prioritize Rest

The body heals when it is at rest and too many of us feel the need to constantly run ourselves ragged, which makes us sick. It’s okay to go to bed early, sleep in and/or take naps.

Don’t Look For a Cause

You will drive yourself insane asking why this happened. The truth is, most people can never know definitively why they got sick, so don’t worry too much about the cause. What’s done is done and blaming yourself for what happened won’t help you feel better.

Visualize Your Condition

Meditation has been essential to my overall wellness.

In the beginning, I had a hard time coming to terms with my condition. I was scared and angry but I knew I had to release these negative feelings, so I began to visualize my illness as a small, frantic bird trapped inside a house trying to get out. In time I came to love the bird and to view it with compassion and understanding. Over and over I visualized releasing the little bird and letting her fly away as I opened all the doors and windows of the house to let the glorious sunshine in.

Creating this metaphor is what helped me. Feel free to use the same one, or visualize an image that works for you but let it be something you can love, then release with great joy.

Use Alternative Medicine As a Complement to Western Medicine

Alternative medicine is a wonderful complement to traditional, western medicine. Look for reputable holistic, Ayurvedic, Anthroposophic doctors or practitioners of Chinese Medicine or acupuncture; whatever you feel intuitively will work best for you.

Be open minded about other avenues of healing, but check with your doctor first to make sure that alternative health plans don’t clash with your current medications or treatments, and don’t completely discredit your traditional doctors, thinking of them as enemies, in favor of alternative medicine. That’s dangerous. I’ve found that traditional and alternative medicines work best in tandem and that they can be wonderful partners.

Kale

Kale cures everything! Just kidding. I hate kale, but I thought I’d throw it in since it seems to be the reigning rock star of the vegetable world, but hey, at least I made you smile, and kale’s popularity brings me to my next bit of advice…

Don’t Fall for Magic Bullet Miracle Cures

Sorry, kale does not actually cure everything and neither does anything else. Unfortunately there are people and even companies that prey upon the sick and desperate, knowing that seriously ill people will do anything for a cure. The vast majority of cure-all claims are complete B.S. Beware of anyone who makes grand, sweeping promises and charges you money. Trust your gut instincts and check references thoroughly before you get involved with alternative healers.

Be Whatever Kind of Patient You Need to Be

Look, lately I’ve seen a lot of super-hero patients in the media and they are awesome individuals who give strength and hope to a lot of people, however, it’s important to understand that most people with chronic medical conditions can’t live up to that. We can’t all dance our way into surgery on YouTube.

You don’t have to blog, write a memoir, start an organization, run marathons or any of that. You don’t need to inspire anyone except yourself and it’s not realistic to be positive and uplifting all the time, or ever if that’s not who you are. The last thing a sick person needs is expectations placed upon them about how they are “supposed” to react to their situation.

Ask for the Help You Need

Asking for help when you need it is a sign of strength and wisdom. Allowing others to help is a blessing and a gift. True friends and real, loving family members will be happy to assist but be sure to be specific about what you need. “Can you take my dog to the park today?” “Would you mind babysitting my daughter or picking my son up from school?” “I’m in pain, could you pick up a few groceries for me tonight?” are all examples of direct and specific requests.

Go to a Teaching Hospital

Find the closest teaching hospital (probably your closest, large University) and contact their specialists. At teaching hospitals you will find devoted staff who may be studying the latest techniques, medications or treatment plans for your illness. Because teaching hospitals are focused on education, they attract doctors who are highly knowledgeable in very specific fields. Teaching hospitals usually have the most state of the art equipment and you may be able to participate in important research that can help not only you, but many others in your situation.

Accept that you may not be cured or healed

Optimism is wonderful, but holding on to false hope will lead to disappointment. There simply may not be a cure in this lifetime, but in the meantime, we all have to live our best lives with what we’ve been given.

Restorative and Yin Yoga

Some conditions may prevent you from practicing, so please, get an okay from your doctors before you practice. Other illnesses benefit tremendously from yoga.

Restorative yoga and Yin Yoga can be gentler, slower and very calming and Yin Yoga is said to feel particularly good for people with connective tissue disorders. I can vouch for that one myself. I have seen many seriously ill individuals in yoga classes and they all say their practice is an important aspect of their healing.

Express Yourself

Bitch, complain, yell, cry, laugh hysterically, sing, shout, create, write, dance your butt off, cuss to high heaven. Whatever you have to do, go ahead and let it out! Expressing yourself releases emotional toxins and makes you feel exhilarated.

Gather Healing Inspiration

Surround yourself with anything that makes you feel vibrant and well and anything which gives you strength. Photographs, quotes, inspirational books or stories, music, art, plants, pets, children—pile on what you love.

Love Your Imperfect Body With All You’ve Got

Understand that illness and physical pain are in no way a betrayal. Our bodies don’t hate us and they aren’t trying to harm us. The Universe isn’t punishing or cursing you with sickness or injury. Physical bodies are the carriers of our souls and flaws and all, they are the perfect vehicles in which we can fulfill our earthly purposes. Love your imperfect body as it is, right now.

Thank your body for its gifts and its beauty and for getting you this far. Trust that together, your body, mind and spirit are stronger and more magnificent than you can even imagine.

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Editor: Catherine Monkman

Photos: minka6/Flickr, Pixoto, Wikimedia Commons

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