Thursday, March 01, 2007

Relevant information by Katrina Berne on CFIDS

(Katrina Berne is a therapist who also has CFIDS. She's able to work part-time. Some with this illness can. Some can't. We're all different)

The below information is from this website

Inside every sick person is a well person wondering what the hell happened.

Welcome to the world of Living With Illness.

Chronic illness is a life experience like no other. It leaves no aspect of our lives untouched, creating uncertainty, self-doubt, losses and limitations, adjustment issues, and a lot of hard work. Illness changes the way we see ourselves and alters our perceptions of the world around us.

Learning to adapt and to live differently is perhaps the greatest challenge we will ever face.

We mourn the loss of life as it was and ultimately learn to create a “new normal.” Although at times we feel defenseless against forces we cannot control, we find options for creating meaningful lives despite significant obstacles.

It is a testimony to the resilience of the human spirit that we learn to endure and ultimately to grow. We learn to make changes when we can and to accept what we cannot change. At times our spirits may flag, causing us to wonder how we can possibly go on...and yet we do.

Those in good health cannot possibly understand the ordeals of chronic illness. They may be supportive or skeptical; they may come closer or back away. Our careers may continue, or come to a screeching halt. Nothing can be planned with certainty. Fluctuating symptoms turn every “yes” into “maybe” or “I hope so.” The coping mechanisms that once worked so well no longer apply. The things we had counted on in life become dreams rather than expectations.

Viktor Frankl wrote:
“We may also find meaning in life even when confronted with a hopeless situation, when facing a fate that cannot be changed. For what matters then is to bear witness to the uniquely human potential at its best, which is to transform a personal tragedy into a triumph to turn one’s predicament into a human achievement. “

We accept that life is not the way it was, and for many of us, this change is permanent. The keys to coping are within us, but are often difficult to find. We face chronic illness first as an overwhelming difficulty, and then as something to be endured. Over time we learn to make the best of what we have, or to “paint with the colors we have left.” Drawing upon newly developed strengths, we find new ways to navigate our lives.

Despite the obstacles we encounter, we find help along the way. Education provides new information about illness and treatment options. Support helps us to face our fears and concerns and puts us in touch with others who speak our language so we don’t feel quite as alone. Hope and humor help us to survive, to continue to put one foot in front of the other, and even to laugh. I hope this website will help you in all of these ways.

Katrina Berne


“I never attribute to malice that which is adequately explained by stupidity.” – Hanlon

We may assume that others can understand our illness if they try hard enough but that most don’t care about us enough to try that hard. In fact, no one without the illness can truly understand what the illness experience is like. Even with the best of intentions, they may misconstrue our experiences and what we say and do and make what we perceive as insensitive statements. Our symptoms vary unpredictably and how we look doesn’t reflect how we feel, leading to confusion. Sensory overload is difficult for anyone to understand; after all, who doesn’t enjoy dinner music along with conversation? (We don’t; it may feel like a train wreck in our heads.)

We can plan our responses to typical statements, such as:
STATEMENT: “You look fine. You must be feeling better.”
RESPONSE: “Don’t let my appearance deceive you.”

STATEMENT: “You don’t look handicapped.” (when you’ve parked in a handicapped space)
RESPONSE: “Some illnesses are invisible.”

Handling unwanted advice is tricky. Well-intentioned folks will suggest you might get well if you exercised, took certain supplements, prayed or had faith, or followed a particular diet.

Again the two-step process is helpful. For example, “I realize you are trying to be helpful, but...” The second part of the statement may be along the lines of “...I’ve tried that and it hasn’t worked,” or “...there is no universally successful approach to treating this illness.”

STATEMENT: “You just need to exercise more.”
RESPONSE: “Stretching helps. Exertional exercise makes me sicker.”

STATEMENT: “My friend took ___(supplement or other product) and got better.”
RESPONSE: “Thanks for the suggestion. Unfortunately we all respond differently to treatments.”

Of course we want to respond differently - and probably sarcastically - but this generally causes more trouble than it’s worth.

Disagreeing can be productive. It’s important to air differences and come to an agreement, or simply agree to disagree when it’s clear you’ll never see eye-to-eye with the other person.

Disagreeing can be a simple two-step process:
Acknowledge the other person’s belief.
State your own.

Example: “I realize it doesn’t seem like a big effort to you to go shopping and out to dinner but it’s often very difficult or even impossible for me to do either.”

For example, “I understand you believe, but my thought on this
matter is ______.
When arguing, strive to remain calm.
Stick to the topic at hand, and avoid the trap of refighting the past.

Maintain eye contact.
Keep your statements simple and to the point.
Don’t get sidetracked or derailed.

Don’t let the other person’s behavior (e.g., shouting) determine your own. Keep your voice calm, a very powerful technique when the other is escalating

We don’t see things as they are; we see things as we are.
Anais Nin


Helen Losse said...

Hi Pris, I don't have CFIDS, so if I say I understand, I'm lying. But I do have psoriasis, that looks ugly, won't kill you, and for which there is no present cure. And perfect strangers stop me all the time to let me know the sure-cure! LOL

Pris said...

I could fill a textbook with all the sure-fire cures suggested to me:-) What you have is no fun, either. I had a friend who battled it!

steve said...

Hello Pris. Stopping by from Pat Paulk's site - I see this post. Understanding takes work, doesn't it? Even then it's difficult. Best wishes from the snow covered north today.

mouse said...

Thank you for the information on responses. It is indeed easy to feel the need for a snarky response to people who are actually well intentioned, and it is hard to think of kind reply.

When it comes to navigation, I think that your radar is working just fine!

Pris said...

Thanks, mouse. I know..I get irritated esp when somebody tells me if I ride 8 hours I'll find the 'doctor who can cure everything' AND if I don't go 'I don't really want to be cured'. Oh find me a red ant hill lol.

Princess Haiku said...

I found this discussing helpful. Thank-you.

Mandyerin said...

I've not read anything as helpful in the 3 and a half years I've had this illness. I've had v little help and have learned huge lessons...there's no space for pointless battles. Learning not to battle myself has been the biggie (and of course that's a work in progress)....and not reduce my life to a tragic farce. My family treat me with a new respect - I know they hurt just seeing what I go through - but I NEED it very, very much. I'm having a bad day today - exhausted, brain-fogged, nauseous etc...the usual....but I came here and found some sustenance (and can read - so can't be that bad lol). I'm a believer in positive affirmations - but I suppose the trick ultimately is choose battles carefully, and take pleasure where I can find it. A little self-focused here - if you'll indulge me. Luck and love to all. Thanks for your common-sense and communality of spirit.

Pris said...

Mandyerin, I'm glad you found this helpful. I did too.