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
Facebook Google Plus
Fibromyalgia  Chronic Fatigue Syndrome & M.E.  Lyme Disease  Natural Wellness  Supplement News  Forums  Our Story
Store     Brands   |   A-Z Index   |   Best Sellers   |   New Products   |   Deals & Specials   |   Under $10   |   SmartSavings Club

Trending News

10 Fibro-Friendly Foods with a Bonus: Beautiful Skin

Fight Back! Win the War Being Waged Against Your Immune System

Studies Show that Magnesium L-threonate Improves Brain Plasticity, Leading to Direct and Significant...

The role of microbiota and intestinal permeability in the pathophysiology of autoimmune and neuroimm...

Clary Sage Oil May Be Pricey, but Its Benefits Are Priceless

Component of red wine, grapes can help to reduce inflammation, study finds

Poly MVA: A Novel Therapy for Increasing Energy, Repairing DNA, and Promoting Overall Health

Acupressure reduced fatigue in breast cancer survivors

Pumpkin Pie Turmeric Breakfast Smoothie - Vegan + Gluten-Free

Omega-3 fatty acid stops known trigger of lupus

Print Page
Email Article

The Caregiver “Road Trip”

  [ 628 votes ]   [ Discuss This Article ]
By Lori Flaherty • • February 14, 2002

A road map for caring for someone with a chronic illness

The following article is reprinted with permission from The CFIDS Chronicle Vol. 14 No. 1 Winter, 2001.

Very few people would take an extended trip without preparing for the journey. You would pack for the weather, take a road map, and decide how long you would stay. But those who suddenly find themselves caring for a person with chronic fatigue and immune dysfunction syndrome (CFIDS) often find that they are unprepared for the trip.

There is no “right” formula for caring for someone with a chronic illness, but there are some simple truths that caregivers can use successfully navigate the obstacles they must confront and overcome if they are to successfully make the journey.


CFIDS is virtually invisible and symptoms wax and wane. This breeds mistrust not only among medical professionals, but also among friends, family, and caregivers. This is one difficult and often unacknowledged part of caring for someone with CFIDS.

Persons with CFIDS (PWCs) don’t always look sick, and caregivers may wonder if they are being manipulated or feel resentful when a PWC appears to be well but can’t play an equal role in maintaining the household. This is a particularly crucial area between partners. The relationship is constantly tested and paranoia, false hopes, and misplaced expectations can grind away at trust.

CFIDS is an enigmatic and complex illness and, unlike most chronic conditions, it is often misdiagnosed or not considered a legitimate disease by some health care practitioners. Thus, caregivers must not only struggle with the emotional, financial, and practical stresses of caring for an ill person, they must also become patient advocates and physician educators.

Lou, once a senior officer in the armed forces and now the full-time caregiver for his wife, Liz, recognizes how difficult this part of caregiving for a PWC can be. “The medical community labeled Liz a neurotic yuppie. The doctors had no training or education in CFIDS, and I was having a very hard time handling a wife who could do nothing but cry and lie down.”

As a caregiver of a PWC, you may be required to fight with health care insurers, disability insurers, and physicians, so take the time to educate yourself about the illness. Not only learning everything you can about CFIDS help you to educate others, it will help you to better understand what your loved one is facing.


Because CFIDS symptoms can wax and wane, it’s important that caregivers recognize that making plans will be a difficult and integral part of coping with this disease. When CFIDS symptoms flare up, many PWCs will not be able to participate in planned activities or even get out of bed.

Kate Mason, a software documentation consultant in Plainfield, N.J., and a caregiver to PWC Mary Lee, agrees. “Our lives, like those of anyone facing this illness, are marked by uncertainty. We can’t know when a flare-up will strike. It’s difficult to plan for things because we don’t know if Mary Lee will be well enough.”

Flexibility and good communication are crucial components to minimizing frustration in caregivers, PWCs, and others. As Bettie Rector, a retired educator in Lockhart, Texas, shares about her daughter Linda, who has CFIDS, “Long trips to visit friends and family must be planned and prepared for well in advance, and then they don’t always happen because of a flare-up. People just don’t understand that she is truly unable to do what se would very much like to do.”

CFIDS also involves debilitating cognitive problems, another reason why caregivers must become good communicators. Bettie says that communication was probably the most difficult barrier she had to overcome when she first started caring for daughter Linda. “There are times when CFIDS sufferers can’t think straight,” says Bettie. “Sometimes Linda finds it difficult to express herself. This causes misunderstandings and leads to unnecessary arguments.”

Kate, too, has had to learn to overcome her frustration with PWC Mary Lee’s communication problems. “Small matters stress Mary Lee out. She recently got angry with me because I wasn’t more helpful about planning dinner for the evening. I get exasperated, but I need to step back and realize that, for her, a flare of frustrated indecision is as much a symptom of the illness as is the muscular pain, insomnia, and unending fatigue.”


CFIDS is chronic. It is not going to go away with a bowl of chicken soup and rest. Though this seems a simple concept, it is difficult for many caregivers to face the fact that they must now alter long-term career and financial goals.

Lou says he passed up a promotion and a change of duty assignment while still in the military because he felt it would have compromised his ability to care Liz and his two children. Lou says, “The family had to come first.”

Not only does caring for someone with a chronic illness require adjusting career and financial goals, it means realizing that many of your hopes and reams will be unrealized. Kate says that the core pain in her life as a caregiver is feeling helpless and cheated. “This isn’t how my life, or hers, was supposed to be. I’m not supposed to be taking care of an invalid for another 40 years.”
Manie McBride, a PWC from Boston, agrees that lifestyle changes for caregivers are difficult. She says her son, Kyle, has had to make major lifestyle adjustments and wonders how much it has cost him. “Kyle does most of the shopping and outside errands unless I get a ride and feel up to doing things myself. He does most of the bills because it’s often too much for me to deal with. Kyle is 33 years old and I’m sure it is hard on him. Once in a very great while he says something that makes me think it bothers him.”


There are few challenges greater than caring for someone else day in and day out, but caretakers must learn to take care of themselves, to grieve for their losses, to acknowledge their own uncertainties, and to allow themselves the time they need to recharge their emotions and energy. They must develop a personal support system, set priorities, and, together with the PWC, learn to adapt to the ups and downs of CFIDS.

Perhaps most important, however, is that caregivers need to recognize that they are not alone: their loved ones are still responsible for their own lives. And PWCs need to realize that chronic illnesses don’t just affect those afflicted with them.

David J. Levy, a well-known speaker and writer on family caregiving, says, “When families are confronted with chronic illness, the disease tends to be the center of the universe, with everything happening in association with the illness. Life can quickly revolve around medicine-taking, doctor appointments, and how the patient feels.”

Consequently, CFIDS becomes a tightrope for both caregivers and PWCs. Caregivers must be careful not to become intimidated and smothered by the illness, but maintain their individuality and outside activities and interests. Care recipients should take care to not unintentionally play their illness for attention or pity. Although PWCs may be ill and have limited mobility, whenever they are able, they should still go to the movies, meet friends for coffee, develop hobbies, etc.

Kate sums it up best: “Each day Mary Lee and I must determine the balance between grief at the illness and the losses it causes, and gratitude for the gifts our lives have given us.”

The major issues of being confronted with chronic illness can be resolved, but it takes time, a sincere commitment to making it happen, a real-world recognition that it might not happen as you planned. As Kate says, “This is not how our lives were supposed to be. Each day, Mary Lee must choose anew how to face CFIDS; each day, I must learn what is needed to support her.”

Post a Comment

Featured Products From the ProHealth Store
Vitamin D3 Extreme™ Mitochondria Ignite™ with NT Factor® Energy NADH™ 12.5mg

Looking for Vitamins, Herbs and Supplements?
Search the ProHealth Store for Hundreds of Natural Health Products

Article Comments

Be the first to comment on this article!

Post a Comment

Natural Pain Relief Supplements

Featured Products

Optimized Curcumin Longvida® Optimized Curcumin Longvida®
Supports Cognition, Memory & Overall Health
Energy NADH™ 12.5mg Energy NADH™ 12.5mg
Improve Energy & Cognitive Function
Vitamin D3 Extreme™ Vitamin D3 Extreme™
50,000 IU Vitamin D3 - Prescription Strength
Ultra EPA  - Fish Oil Ultra EPA - Fish Oil
Ultra concentrated source of essential fish oils
Ultra ATP+, Double Strength Ultra ATP+, Double Strength
Get energized with malic acid & magnesium

Natural Remedies

A Hard-Working Molecule that May Help Ease Pain & Brighten Mood A Hard-Working Molecule that May Help Ease Pain & Brighten Mood
Are You Obtaining the Proper Enzymes? Are You Obtaining the Proper Enzymes?
Probiotic Mint Promotes Healthy Gums & Teeth, Freshens Breath and Whitens Teeth Probiotic Mint Promotes Healthy Gums & Teeth, Freshens Breath and Whitens Teeth
How to Jump-start and Sustain Energy Production in CFS How to Jump-start and Sustain Energy Production in CFS
Secret Nutrient for Radiant Skin Secret Nutrient for Radiant Skin

ProHealth, Inc.
555 Maple Ave
Carpinteria, CA 93013
(800) 366-6056  |  Email

· Become a Wholesaler
· Vendor Inquiries
· Affiliate Program
Credit Card Processing
Be the first to know about new products, special discounts and the latest health news. *New subscribers only

CONNECT WITH US ProHealth on Facebook  ProHealth on Twitter  ProHealth on Pinterest  ProHealth on Google Plus

© 2016 ProHealth, Inc. All rights reserved. Pain Tracker App  |  Store  |  Customer Service  |  Guarantee  |  Privacy  |  Contact Us  |  Library  |  RSS  |  Site Map