ProHealth health Vitamin and Natural Supplement Store and Health
Home  |  Log In  |  My Account  |  View Cart  View Your ProHealth Vitamin and Supplement Shopping Cart
800-366-6056  |  Contact Us  |  Help

|
|
|
|

Trending News

Strengthening DNA to Prevent Inflammation, Heart Disease, Dementia and More

Magnesium: Widespread Deficiency with Deadly Consequences

Turmeric compound boosts regeneration of brain stem cells

CoQ10: The Longevity Factor

Culprits of Autism Identified: Toxins, Gut Bacteria, Nutritional Deficiencies, and Vaccines Made wit...

Omega-3 Fatty Acids Increase Brain Volume

Optimal Prostate Defense Requires a Multi-Modal Strategy

Use of Broad-Spectrum Antibiotics Before Age 2 Associated with Obesity Risk

Extending Life and Fighting Disease with Resveratrol

How Lipoic Acid Preserves Critical Mitochondrial Function

 
Print Page
Email Article

3 Simple Steps Patients Can Take to Help the Healing

  [ 60 votes ]   [ 6 Comments ]
By Joy H. Selak • www.ProHealth.com • January 30, 2013


The following article is written by Joy H. Selak, author of You Don't LOOK Sick! Living Well with Invisible Chronic Illness with Dr. Steve Overman.

_________


3 Simple Steps Patients Can Take to Help the Healing -  By Joy H. SelakIf you are reading this as a newly, partially or perhaps even undiagnosed patient with a chronic illness, I'd speculate you might look at these three steps and see them as anything but simple - perhaps obvious, impractical or impossible. If so, I ask you to bear with me, as I have been on this chronic illness journey for a long time, decades, and if I were allowed a do-over, these three steps are the ones I would set out to accomplish on the front end.

After writing the book You Don't LOOK Sick! Living Well with Invisible Chronic Illness with Dr. Overman, I've had the opportunity to attend patient support conferences and receive readers' letters from all over the country, even abroad. Learning the stories of hundreds of patients has reinforced for me the validity of taking these recommended steps. I've met so many patients struggling with illness to the point of despair, and yet managing their lives in ways that amplified both their symptoms and the emotional challenges of long-term illness. There is so little we can control about feeling sick all, or most, of the time. The simple steps below are within our control.

Find a Good Doctor, Get a Diagnosis and Begin Treatment

This seems so obvious, doesn't it? Of course this is the first thing to do. But, in fact, it is a tremendous challenge and many patients give up, or go off course, before they can accomplish this vital first step. Patients who have poorly understood, chronic conditions are often marginalized by the health care profession. They are told their symptoms are 'all in their head', or to 'just live with it'. They are asked if perhaps they need to see a therapist, instead of an MD. This process can be degrading and frustrating, and patients sometimes quit looking before they find that caring physician, in the proper specialty and with experience in treating their specific disorder.

I gave a talk recently to a patient support group and made the point that we hire doctors to provide a critical service, the same way we hire accountants, attorneys and other professionals. If the level of service is unacceptable, it is our job to move on. I allow any doctor three strikes before making this decision, but even so, I had to fire a few before I assembled a compassionate, collaborative health care team. After the talk, a physician came up to me and remarked, "I'm glad you said that, but you know sometimes it's not anyone's fault, the relationship just isn't a fit because of personality or temperament. There are times I know I am not the right doctor for a patient, but they have to do the firing, I don't really have that option."

It took me 7 years to get my first diagnosis, but the doctor who named the illness was unsympathetic and ill equipped to treat it. While I was grateful to him for the diagnosis, I kept looking until I found a physician who was interested in my condition and experienced in treating it. She told me early in our work together she could treat only part of what was going on with me, and I needed to continue the search. She believed there was at least one more diagnosis in my future. That was the bad news.

Here's the good news, I only had to find that first good doctor because it turns out the really good ones have their own little club - they call each other for advice, refer patients to each other, and share information. Find one and you have access to the others. With her help, it didn't take long at all to find my next good doctor, get a second diagnosis, begin treatment and at last see my symptoms begin to stabilize.

If we understood chronic illnesses completely, they wouldn't be chronic; we'd have figured out how to fix them. As patients, we need to understand that in a real sense, we are part of an experiment unique to our particular set of symptoms, and finding the most effective treatment will take time. We must work with our physicians at the complex task of finding the most effective medications, in the right doses, and align this with lifestyle changes and other supportive therapies. Once we do find greater stability, it is likely our symptoms will improve, or change, or we'll get sick with something new and it's back to the drawing board again. There isn't a magic bullet.

Become the Best Patient You Can Be

The chronically ill often have to spend so much time struggling to find a good doctor it's easy to forget the importance of being a good patient. Imagine what a compassionate doctor's day is like. He or she might meet with one person after another who is confused, despairing or demanding. The doctor is on a tight time schedule, but patients in need may exhibit little respect for this, take more time than is allotted and leave the doctor stressed and running late all day long. Often tests are inconclusive or fluctuate from day to day and patients become angry at this lack of verification. When doctors ask to hear the patient's story - the family history and how the illness developed - to help them solve the puzzle, patients may speak more of feelings than facts, making it hard for doctors to get the information they need. My advice to you is - Don't be that patient. Be this patient:

  • Come to appointments prepared, with current medications and supplements updated and written down in advance.
  • Develop a language to clearly describe symptoms, changes in symptoms and side effects of treatment.
     
  • Prepare a detailed family and personal history and keep accurate records including all treatments, strategies and providers and an annual summary.
     
  • Arrive for a fifteen-minute appointment with no more than three carefully chosen questions or topics to address, in writing, with a copy for your doctor.
     
  • Be compliant to instructions, and if not, have a reasonable, valid reason why not.

Make Peace with Your Illness - Accept It as Part of Who You Are Now

We describe our relationship with disease in terms of combat and conflict. Obituaries list the names of people who died 'after a long battle' with illness. We talk about how people have 'beat' a disease, or are continuing to 'fight' it. We do not begin our journey with illness looking to ease symptoms and improve our quality of life. We are looking for a cure-we want the thing to go away. I've met many, many patients who had been ill for years, but still began each day determined to ignore this fact. They were fighting to be the same person and live the same life they had before becoming sick. As a consequence they were not improving, constantly exhausted and felt like a failure at everything.

Two things helped me get past this futile mindset. The first was the bell-shaped curve. I thought about what it would look like if all of humanity were laid out on the curve according to relative health. At the sickest end would be children born into poverty and filth, whose life expectancy was very short. It would include people with degenerative, terminal end-stage illness. At the most healthy end might be people from those mountain villages where everyone lives past 100, or world-class athletes in their prime. At the top of the curve, representing the average might be people who had experienced some surgeries or health emergencies and who probably had a range of illnesses from which they recovered, at least partially. You can choose your own examples.

I asked myself, where do I fall on this curve, with multiple chronic conditions, adequate health care, stable symptoms and terrific family support. I had to put myself much closer to the top of the curve, the average, than to the edge of the curve, the desperately sick and dying. What this exercise taught me is that illness is normal; it affects everyone. In the great scheme of things I'm not so bad off, so I'd best get on with life.

The second thing that helped me was grief. Once I began to consider that my illness was not going away, I would not do all the things I had planned for my life and I would never again be the person I once was, it took me to my knees. I cried and cried. For months. I feel like crying again just remembering that time. But after I let the grief come and wash over me, I came out the other side curious about who I was now, and what I could do now.

I began to structure my days to accommodate and honor this illness that was part of me. I reduced social obligations; I began to take daily rest periods and experimented with how many hours I needed to be in bed each day to enjoy the highest function. Same with exercise, how much was too much and exacerbated symptoms, in what small increments could I add a little more. I learned I needed to be home, alone and quiet, several days of the week.

Once I made peace with being a sick person, the social challenges became so much easier. I could tell people I had an illness without emotion, or not tell them at all if I didn't want to. I began to discover I had gifts, old and new, that could still be given and developed and built upon. Today, I love my life and there isn't much that I would change.

There are really good, practical reasons for making peace with illness, but the best reason is that until you do, you can't discover the new life you can build for yourself and experience all of its mystery and opportunity. You can't discover that it is possible to live well, even if you can't get well.

Learn more about Joy Selak and You Don't LOOK Sick! Living Well with Invisible Chronic Illness at her web sites: www.joywrites.com and www.chronicinvisibleillness.com.


Joy Selak - Author of You Don't LOOK Sick! Living Well with Invisible Chronic IllnessAbout the Author

Joy H. Selak has lived with chronic autoimmune, musculoskeletal and neurological conditions since the late 1980s. Prior to becoming ill, she earned her Ph.D. in Curriculum in Instruction from Arizona State University, where she taught writing and served regionally as a language arts curriculum specialist. In 1981, she left education to become a financial consultant, rising to the position of Vice President, Investments with Smith Barney in 1987. She taught portfolio management at California Lutheran University and Skagit Valley College, and was a regular speaker to professional colleagues and community groups about building client relationships and investment strategies.

Joy frequently speaks to patient groups and medical professionals nationwide about building a meaningful life that contains illness, and she has been a guest on radio and television programs. She is also a speaker to schools and writers’ conferences about the craft of writing.



Please Discuss This Article:   Post a Comment 

What's the point?
Posted by: rjb
Jan 30, 2013
I don't see any point in becoming a better patient when there's nothing a Doctor can do for you. I don't see any point in going to a Doctor until some kind of treatment becomes available.
Reply Reply

 
What's the point? (OOPS!)
Posted by: pearls
Feb 1, 2013
I often copy and paste the message I'm answering, with the intention of deleting it before posting. Unfortunately, in my other message, I forgot to delete it. (I do wish we could edit our message after they are posted!)

Anyway, here is my message without the "What's the point" message "rjb."

I've had fibromyalgia for about eleven years, and can tell you there is life after your diagnosis. If you find the doctor who can help you, there are many things he can do to help you. If you are looking for a complete, and even instant, cure, however, you will not find one. That is not how things work. I have improved my life tremendously by finding the right doctor, being a better patient, and making peace with my health. Life is good - not perfect - but very good.

 

 
In re: what's the point?
Posted by: pearls
Feb 1, 2013
I don't see any point in becoming a better patient when there's nothing a Doctor can do for you. I don't see any point in going to a Doctor until some kind of treatment becomes available.

I've had fibromyalgia for about eleven years, and can tell you there is life after your diagnosis. If you find the doctor who can help you, there are many things he can do to help you. If you are looking for a complete, and even instant, cure, however, you will not find one. That is not how things work. I have improved my life tremendously by finding the right doctor, being a better patient, and making peace with my health. Life is good - not perfect - but very good.

 


On becoming a better patient
Posted by: Diegolady
Jan 30, 2013
If there was just one 'treatment' most of us would be well. However, as you know, those of us with fibro/chronic fatigue have multiple problems and frustrations confronting us daily. I find that my MENTAL attitude has a lot to do with how I go about my day. I know from almost 15 years of experience with the above that whining doesn't help me sleep better, or make my digestive problems go away, or decrease the aches and pains. On top of everything else, my 79 year old, very active, husband was diagnosed 2 years ago with early memory loss dementia, so my plate is full. In order to cope I have to be my own best advocate and education is the key. Sure, some days I want to curl up in a quiet corner and feel sorry for myself, but at age 79 I have a lot to live for and I can't rely on the standard medical profession to do it alone.
Reply Reply

Taking Control of our Health
Posted by: SuellaP
Jan 30, 2013
All of this good advice. I feel we do have to keep being aware of any new symptoms or co-morbidities to make sure that nothing new or nothing else is going on with us health wise. For some, a doctor can help, or at least monitor us yearly.

There is so much we can do for ourselves to support our current level of health and then perhaps to move on to either be able to do a bit more or to reduce some symptoms. Being a better patient, or a better health provider for ourselves means being as well informed as we can, not just about CFS/ME

Recent knowledge that there are several subsets of the illness identified based on gender, age, etc, makes it easier not to slavishly follow one person's example or protocol if I find it doesn't work for me.

I am grateful to Bruce Campbell at cfidsselfhelp.org
Dan Moricoli at http://cfsknowledgecenter.ning.com/group/theexercisegroup
Cort Johnson at Pheonix Rising and now at Health Rising
www.cortjohnson.org/

These three people have given me the tools and information to first understand my specific illness problems, gradually improve and to claim some of my life back, as well as develop new ways of living.
Reply Reply

After more than 25 years with FMS...
Posted by: ZonaB2
Feb 9, 2013
I seem to find new things to learn about my health every few months. In the last year the lesson that has been brought home...and seems so obvious...is that not every new symptoms should be blamed on ______________ (fill in your chronic illness). Mine is fibromyalgia. I ignored symptoms for months thinking they would go away on their own before I discovered that I had:
1. peptic ulcers
2. a huge kidney stone with hydronephrosis (thank God the hydronephrosis reversed itself once the stone was gone!).
3. a stress fracture in my foot that I walked (rather, limped) on for about two months before it was properly diagnosed by a podiatrist.

When each of these first appeared, I just wrote it off to a "new and different curve ball" that FMS was throwing my way. As it turned out, each of them was easily treatable -- once properly diagnosed. I did have to go to three different doctors to get the abdominal pain diagnosed (the ulcers and the kidney stone were discovered to be co-existing).

And I went to two different docs to get the fracture found. So there are times when we have to work to get the right diagnosis. However, the first step is realizing we NEED a new diagnosis. Not everything is part of the chronic illness we already live with!

Smile - today is a new day!

Zona Taylor
diagnosed with fibromyalgia in 1993
first symptoms were likely 7 - 8 years before that.
Reply Reply


Post a Comment

 
Free Chronic Fatigue Syndrome and Fibromyalgia Newsletters
Subscribe to
Our FREE
Newsletter
Subscribe Now!
Receive up-to-date ME/CFS & Fibromyalgia treatment and research news
 Privacy Guaranteed  |  View Archives

Save on Vitamins and Supplements

Featured Products

FibroSleep™ by ProHealth FibroSleep™ by ProHealth
The All-in-One Natural Sleep Aid
Optimized Curcumin Longvida® by ProHealth Optimized Curcumin Longvida® by ProHealth
Supports Cognition, Memory & Overall Health
Ultra ATP+, Double Strength Ultra ATP+, Double Strength
Get energized with malic acid & magnesium
Ultra EPA  - Fish Oil Ultra EPA - Fish Oil
Ultra concentrated source of essential fish oils
Mitochondria Ignite™ with NT Factor® Mitochondria Ignite™ with NT Factor®
Reduce Fatigue up to 45%

Natural Remedies

Protect Against Sun-Induced Skin Aging From The Inside Out Protect Against Sun-Induced Skin Aging From The Inside Out
Research Links Green Tea to Weight Loss Research Links Green Tea to Weight Loss
Undenatured Type II Collagen - Chicken Soup for Your Joints Undenatured Type II Collagen - Chicken Soup for Your Joints
Running on Empty? Fuel Up with NADH Running on Empty? Fuel Up with NADH
The Remarkable Benefits of Reishi Medicinal Mushrooms The Remarkable Benefits of Reishi Medicinal Mushrooms

FIBROMYALGIA RESOURCES
What is Fibromyalgia?
Fibromyalgia 101
Fibromyalgia Symptoms
Fibromyalgia Treatments
| CFS RESOURCES
What is CFS?
ME/CFS 101
ME/CFS Symptoms
ME/CFS Treatments
| FORUMS
Fibromyalgia
ME/CFS
ADVANCED MEDICAL LABS
WHOLESALE  |  AFFILIATES
GUARANTEE
CONTACT US
PRIVACY
RSS
SITE MAP
ProHealth on Facebook  ProHealth on Twitter  ProHealth on Pinterest  ProHealth on Google Plus
Credit Card Processing