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Positive Thinking vs. Healthy Coping in chronic illness

What is the difference between positive thinking and healthy coping?

“Keep thinking positively!”

“Keep your chin up!”

“Stay strong!”

These are very common cliche responses we hear from society as individuals with ongoing health difficulties. They aren’t incorrect responses, but when those responding seem to believe this is truly how we handle the horrible pain/illness, terrifying future of further health concerns, and crushing regular losses which all come with long-term illness, then encouraging “positive thinking” alone can have quite a negative fallout.

For example, if one is in severe pain (meaning pain worse than a fracture or pain worse than childbirth, but constant, daily, and indefinite) after years, with treatments only failing, and close friends continue to say, “stay positive” as their only source of inspiration, will those words be uplifting over time? No, the attempt at encouragement over time will add to your feelings of isolation, making you feel increasingly deflated, rather than the intention of making you feel more positive, optimistic, and empowered.

Would you say, “suck it up” to a friend who is grieving over the loss of a parent? I certainly hope not. Essentially, this is the idea surrounding “positive thinking.” The concept that the more we “suck it up,” the better off we will be, and the stronger we are.

PS, Our bodies work exactly the opposite of this construct.

The more we avoid pain, the more we distract ourselves from our true emotions (not negative emotions, but real emotions), the more likely our bodies are to feel the stress fallout and rage against us. One with a chronic disease would do well to minimize stress; we know this from immense research (and I can tell you this from my own personal research on chronic pain and chronic illness!).

Minimizing stress is not equal to avoiding difficult emotions or distracting from pain. We have to face our pain and emotions, recognize them, meet them, and accompany them through our lives. They won’t allow us to abandon them, and we know that trying to do so only causes added difficulty down the road.

In Positive Thinking, saying “sure, I’m doing fine” may make others more comfortable temporarily, but it is not necessarily “healthy” for you or for the relationship. Positive Thinking encourages us to become more closed off, in turn others also allow more distance to grow until the relationship diminishes. They realize everything is far from “fine” but both take part in a ritual of pretending everything is wonderful because it’s far more comfortable than confronting the reality.

“Healthy coping… differs from the popular notion of “positive thinking.” It implies the capacity to tolerate and express concerns and emotions not just the ability to put anxieties aside. Being able to discuss the anxieties, uncertainties and fears, losses and sadness that usually accompany severe illness is generally helpful, despite the pressure commonly exerted by family and friends for the patient to always “keep a positive out-look.”25 “Positive thinking” may represent an attempt to avoid confronting the distress of chronic illness, and doctors who care for these patients and their families are not immune to such patterns of coping.”  Quote from a study in -Emotional Demensions of Chronic Disease

So often during the course of chronic disease, we have to make choices between the temporary comfort of others, and protecting our own welfare. Regularly, our bodies make that decision for us and force us to miss out. Especially then, healthy coping is paramount! It helps us re-gain some footing again. The openness in healthy coping encourages sharing, allowing others around you to understand where you are, what happened in the situation, how they might play a role in being there for you, and how you can be there for them. It lets others know you aren’t too fragile to listen to them and what they are going through, either. Most likely, those around you are feeling helpless, and would like to be there for you, but don’t know how- or how to ask. Being specific in our needs can help us find our own voice, and being more open also can help others who care about us join in on our “support team.”

Fair warning, most will not know how to respond appropriately, but you may be surprised who is game to see how they can be there for you in big or small ways. In being more open, you may also find that your example sets off a chain reaction in others to become more open with you in how they are doing as well. Healthy coping is so much more contagious than positive thinking, because it encourages support, connection, and community!

Isn’t positive thinking the same as optimism? No. Optimism has more to do with responsibility, letting go of guilt, and looking to the past, present and future without seeing yourself as a burden. I recommend reading the book, Learned Optimism by Martin Seligman.

Healthy Coping differs from Positive Thinking in that healthy coping requires us to lean into our feelings- both physically and mentally. Checking in with ourselves periodically, and then making minor adjustments to our lives to course correct for better balance. This may mean you need more rest, more exercise, more time with friends, another visit to a doctor, see a psychologist, open up to a good friend, eat differently, spend more time focused on your spiritual life, take better care of yourself, etc. Chronic illness requires us to make these adjustments frequently instead of thinking everything is going to work itself out until the ignored symptoms or stress build up. Healthy Coping may be the more deliberate, mindful path, but it is the path of self care instead of conveying a false smile.

To start making these adjustments, we can ask, “How are you?” instead of “Are you ok?” A yes or no question forces us to choose only negative or positive, however, healthy coping encourages others to share and touch base with one another and ourselves- this is how support and compassion are built. We don’t have to choose sides in healthy coping. Try not to think of your days as being good or bad, black or white, suffering or overcoming, but instead- working to find balance every day, always learning from your body and those around you, and doing the best you can now, in this moment.

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1070773/

 

 

 

The Dream #SickLivesMatter

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After sharing the original Sick Lives Matter, I’ve been surprised and grateful for the response of the piece! However in response, some said, it’s too late for change. Some responded that we are too far down this path of patient neglect in healthcare, and there is no returning from it now. But I believe it is just the right time for us to rise up. I’m not alone either, with online patient forums like Patients Not Addicts gathering to influence legislation in Washington DC, advocacy groups like Give Pain a Voice, pain organizations working to change the stigma of pain patients, and so many private individuals sharing their stories wherever the universe allows, we ARE in the middle of a revolution. Are you part of it?

How can we rise up when so many of us can’t even work? How are we supposed to change policy when doctors and family don’t seem to listen? How can we make an impact on the future when many of us are struggling to care for ourselves? These are the reasons we HAVE to do something about it.

Consider cancer patients. In the last 10-15 years, the treatment of cancer has turned around because cancer patients joined together and created a movement. Everyone knows Susan G. Komen represents Breast Cancer Awareness because hard working cancer patients were able to get big organizations to stand behind their cause. Years ago, minorities with cancer were being ignored, rare cancers were going undetected, and people were terrified of finding out they could have any form of cancer because there were so few options- and you were likely too late anyway. Now, we have cancer treatment centers popping up all over the country, treatments that are actually successful at sending cancer into remission, and celebrities who bravely share their cancer experiences with the public.

Consider HIV/AIDS. As recently as 15 years ago, HIV was still a death sentence. Celebrities may have been wearing red ribbons, but people were still dying so quickly, suffering in silence, and had little recourse. Not only did society brush off the disease as a punishment- so did healthcare professionals (#STIGMA). Now, not only is there awareness, there is a culture of S.T.D. prevention and regular testing. When the worst happens, and someone is diagnosed, life is not over, people are living long lives because they have treatment and accessible management. Educated HIV doctors aren’t rare, and medication is becoming more affordable (although there is still a ways to go in regard to RX coverage).

HIV patients knew something about being brushed under the rug of society and healthcare, and paying for it with their lives. They changed the game by telling their personal stories so that those who tried could not look away! They joined together for a united cause, and chronic illness survivors can look to their bravery for inspiration.

I dream of emergency rooms where doctors and nurses treat chronic pain patient’s emergencies as high priority as everyone else’s. I see a future of chronic disease treatment centers around the country. I envision home visit physicians covered by insurance. I imagine the homebound and bedbound having access to quality patient care and mental health care from home, covered by insurance. I pray for research facilities searching for a vaccine to end degenerative neurological pain diseases. I see a world in which sudden deaths from unmanaged pain, and suicides from under-managed pain are a heartbreaking thing of the past. Is under-treated chronic illness a sign of the end times we are meant to accept with apathy, or is there something we can do from our sick beds and wheelchairs to make a change? We can be the ones who flipped the script for future chronic patients, young and old. This can be the moment you decided to take a stand. What is your dream?

Your life matters. Your story matters. Your voice matters.

#SickLivesMatter

To share your story or to learn how you can get involved in advocacy online, email abodyofhope@inbox.com

 

Gift Ideas for people with Dysautonomia, POTS, and CFS

 

If you’re buying for a loved one with a chronic illness this holiday season, I have you covered with these gift suggestions, links, gadgets and creative ideas to help you find the perfect present especially for them!

*Starred items are sold by disabled entrepreneurs. 


 

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Those of us with chronic conditions tend to have extreme dry skin. Personally, I also have extra sensitive skin (because I hit the genetic jackpot). A deep moisturizing product with collagen or an anti-aging night mask helps soak into that dehydrated skin. Mary Kay’s Extra Emollient Night Cream at only $14, has been a top seller for decades. My mother used it from the time I was a little girl and she has always had beautiful skin. My sister and I love it, so it’s definitely one of those heirloom products you pass down through generations. Now I’m passing it on to you! I recently heard a woman in a chronic illness support group suggest that this cream works better than antibiotic ointment for healing her sores caused by autoimmune disease. I wish I could give a bit of this to everyone suffering from chronic dry skin.


 

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Medical Alert Italian Charm Bracelet Gadow Jewelry

I’ve been scouting medical alert bracelets, and these are my top picks specifically for those of us with multiple conditions, rare diseases, or complex health needs.

These fabulous medical ID Italian charm bracelets are available on Gadow jewelry, Ebay, and Etsy for between $20-$40. The individual links are sold separately, and I love that they can be custom ordered. If you want to add a new diagnosis, or take a medication off, links can be added or.removed easily. If you lose or gain weight, they can be easily adjusted by adding or removing a couple links. I also love the idea that you can mix your serious seizure condition alert charm next to a sparkly pink unicorn charm just for funzies 😁 As far as EMT paramedics go, in an emergency, they’re more likely to look for an alert bracelet rather than searching for a necklace, key chain, or wallet card, etc.

 

The new tech trend in medical info/alert jewelry is sporting a hidden USB in your bling. If you have ever been at the ER, urgent care, or doctor appointment when you couldn’t advocate for yourself, then you might see the benefits of medical USB jewelry. This technology is available in a broad range of styles from bracelets, key chains, necklaces at every price point.


 

One thing I learned when I entered the POTS world is that they have the lockdown on health technology! Since you can get a quick-read blood pressure cuff at any drug store, I’m going to try and kick it up a notch here.

Today, smart watches can read heartrate, blood pressure, and blood oxygen level, along with tracking steps, distance, calories burned and has a sleep companion which all syncs with your mobile. It comes in Dysautonomia blue as well as black; price range on Amazon, $93-$250. If this works as well as the company claims, that is one heck of a Dysautonomiac invention!

I learned Biofeedback 11 years ago to help me manage pain, stress and sleep. Four years ago, when all the crazy Dysautonomia and POTS symptoms undid my body, I started whipping out my Biofeedback techniques like my life depended on it (well, it has). Learning to have better control over typically automatic responses like breathing, heart rate, blood flow, circulation, and blood pressure are very challenging, but can be so helpful in conditions affecting the heart, nervous system, or in conditions which interrupt sleep.

This amazing Biofeedback and Neurofeedback smart phone app was made by a little known group you might know called THE US DEPARTMENT OF DEFENSE! The app can monitor respiratory rate, skin responses, temperature changes, as well as brain waves. Check out more about this FREE app here at Neurogadget.com which includes links to purchase the biosensor devices for your smart phone. Good job, America!


 

I can’t say enough about compression socks. And now, they are finally cute! You can even find printed compression leggings. They help us keep the “blood pooling” or edema to a minimum by encouraging circulation. Compression stockings displace blood from the lower extremities and squeeze it into the upper body where we are desperately lacking. It also lowers vascular issues in the legs and helps prevent strokes. This is one pair of socks that earn their keep! Check more cute compression socks links here on my last gift guide for people with Chronic Pain.


 

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Gourmet Salt Sampler

If you know someone with Dysautonomia, POTS, or Hypotension, then you know we are a little obsessed with our salt intake to raise our blood pressure. For the holidays, turn your loved one into a connoisseur of specialty salts by allowing them to sample 6 different types of sea salts from around the world. Purchase through Amazon, made by The Spice Lab, for only $29.95. They arrive in a wooden stand, nestled in a kraft gift box. Or, spice up your loved one’s pallet with specialty seasoned salts. SaltWorks.com creates 5 unique salt blends like Merlot salt and black truffle salt in their Fusion Flavored Salt Sampler, $26.95. Mmmm, pardon my drool!


 

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Fellow Dysautonomia fighter and advocate, Suzanne Stewart makes fabulous custom awareness jewelry to your desire. A portion of her earnings go to help chronic illness organizations because her rapidly beating, pace-maker equipped heart is also full and generous! Take a look at her website, *Support in Jewerly, and order something pretty for the chronic diva in your life.


Dr. Lam, a leading expert on Dysautonomia, has developed Tai Chi for Rehabilitation, $24.95. I first learned about Tai Chi for Dysautonomia from POTS and chronic pain blogger, Elle and the Auto Gnome who attributes Dr. Lam’s Tai Chi in part for her improvement. The DVD’s can be adapted to a sitting position or even (as I’m learning) a flat position, thanks to my cardiac rehab therapist. [If you give a gift of “healing” to a friend with a chronic illness, it’s best to include it in addition to her main gift. Otherwise, it may send a negative message to us that we aren’t doing enough for our health in your eyes.]


Artist, Sarah Allegra has developed this magical *2016 Calendar with Red Bubble, depicting her favorite images. Sarah Allegra is not only a provoking photographer, she also suffers from Chronic Fatigue Syndrome/ME/SEID which always influences her art. She is an activist, raising awareness through her blog, Mythic Pictures, as well as through her expressive images which speak volumes. If your loved one has severe fatigue associated with her disorder, often artwork can say so much more than words.


 

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“It’s like 10,000 Knives when all you need is a Spoon” *Awareness Tee’s on Zazzle.com

Other awesome gift ideas include: a nice juicer/blender $30-$200, electric toothbrush $5-$200, Funny original Awareness tops $20-$30 on Zazzle and Cafepress, Whole Foods gift card, Amazon gift card, vitamin shop gift card, massage gift certificate, electrolyte drink drops, or ear plugs.

As you are shopping for your friend, consider that she has to lay down A LOT due to chronic daily fatigue and because of many other symptoms causing falling or potentially fainting when she tries to get up and around. Anything cozy, things she can do laying down, and compact items she can keep near her bedside are all ways to play the chronic shopping game. Thank you for playing! Most of all, your solid presence in your loved one’s life is already a win as far as they are concerned. Just so you know, you are the best! Thank you for visiting,

Happy Holidays!


 

Gift Ideas for chronic illness

Find out what my gift-giving NO NO’s are when shopping for your chronically ill/ disabled loved one here.

 

 

Disability Won’t Take my Passions Away

If you have a passion for something that you can no longer do because of physical impairment, do you truly stop loving it? Then why do we say: “I used to love to…”?

This is one of the most heart-wrenching parts in coming to terms with disability. When you go to say or write the thing you’ve always loved to do, and you realize it is suddenly in past tense. It doesn’t stop twinging your heart each and every time you have to say that you USED to love hiking or taking long road trips. But you come to terms with saying it in past tense. I did. Reluctantly, my old life of passions and dreams were exchanged for my new life of “used to love” and “always enjoyed”. One by one, I locked away those pieces of myself I no longer had physical access to.

Then, a few years ago, my health became much worse. I went from moderately mobile with chronic pain to bed bound with a variety of chronic illnesses and chronic pain conditions. Now, I’ve found myself cutting out all of the rest of life’s pleasures from the list of things I love. How can I say, “I used to love music” or “I used to enjoy singing” or “cooking used to be one of my passions”  when these are all lies!

The truth is, I am still passionate about all of these things! Just because I cannot participate in them actively, does not mean the joy has not remained. In fact, when my brain condition and ongoing migraine becomes insufferable, even with no sound tolerable, getting lost into a silent song within myself has at times been my only reprieve from the unrelenting pain. My instruments now live in cases in shelves above my bed, or tucked away in closets. My voice has not echoed against the wall in song for years, but every day an instrument plays… A song cries out loudly inside of me. A different arrangement every single day, melodies no one hears but myself- and this music will not stop just because my ears cannot tolerate sound! No pain, no disability, no illness or mental destruction can take that music away from me.

Just because parts of my flesh weaken, and I am forced to make adjustments and accommodations to that- doesn’t mean that my passions and loves should crumble along with my flesh. There is nothing wrong with how much I desire. I refuse to shut parts of myself off just because I might FEEL more to live with passion.

Even though I can no longer cook, do I not still love it? I don’t need to be standing upright at a stove or walking the isles of a grocery store to envision a new recipe. I can visualize the food in front of me. I can imagine the flavors of a recipe in my mind’s eye. Is this not the passion for cooking still alive inside of me? Even when my POTS makes eating the last thing I want to do, I can still escape my pain through the simple joy of imagining myself cooking. Why would I ever say “I used to enjoy cooking” when that zeal continues to live strong inside of me?

Though pieces of my body may break, though my mind might continue to slow, though things I am able to do may drift away from my grasp, I choose not to allow that which I love break away. I choose to hold my passions that much closer to me.

And for those I let go so long ago, I would like to reclaim them. I ask that in comments, you consider reclaiming some of your own that you know you will always love forever.

-I have always loved to travel.

-Hiking is a love of mine.

-Dancing will always be one of my passions.

Your turn.

Thank you to artist Fensterer for allowing your artwork, “Lost Between the Sounds” to be featured. This was the only image I could imagine for this article, as his powerful work helped inspire it. Check out his other powerful images at DeviantArt.

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Living life with a chronic illness is definitely not easy. But I do my best to push through all the barriers this illness puts in front of me! In my heart and mind, I believe maintaining a positive outlook on all situations in life will carry us through to much better times! I hope you find the information that I provide both helpful and inspirational!

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