Tips for Living with ME/CFS and FM

Life for most patients diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Fibromyalgia (FM) will become different from how it was prior to illness. Different means that patients will need to test their limits and make changes to previous norms or expectations, to help them achieve a better quality of life.

While no one can completely escape negative or stressful situations, people with chronic illnesses may find that stress, pain and illness can become intertwined. Even getting through activities of daily living, an easy task for someone in good health, will usually pose a significant challenge for individuals with chronic illness.

So, it becomes essential that patients learn how to manage their time and energy as efficiently as they can, within the constraints of their illness. Patients will also need to examine and recalibrate their expectations.

Expectations

The first step is to determine which situations they can control or change from those they cannot; then, decide on how to best respond to these. Some things may be worth fighting for while others will need to be let go. When it comes to expectations, patients need to consider the role of outside sources on their own expectations and personal assumptions, fears or beliefs which they themselves could be attaching to these. For instance, patients might be trying to live up to their pre-illness level or they might be doing more than they can realistically handle, for the sake of gaining approval.

It is important to remember that no one can be everything to everyone; people who push themselves and attempt to do this will only further jeopardize their health and self-esteem. Therapists who coach people with chronic illnesses advise that patients make livable choices, seek a healthy medium and avoid going to extremes, like longing for ideal health or viewing themselves as hopelessly ill.

Growing beyond the illness

There is absolutely nothing wrong with asking for help with things that a person can no longer do and the amount of help needed will depend on the severity of the patient’s condition. On the other hand, relying on others too much may impose more limits and restrictions on the patient.

Sefra Kobrin Pitzele, now deceased, wrote about dependence in her first book, We Are Not Alone: Learning to Live with Chronic Illness (Workman Publishing Company; 1st edition (January 9, 1986)), “If we allow it [dependence] to happen, we can let our spouse and children and parents and friends put us into a very small box in their minds and hearts—the box they reserve for pity. Sooner or later, we all want more love and respect than that. To get it, we must grow beyond our illness and relearn how to live with risks, anger, discomfort, challenges and everything else in life.”

Ms. Pitzele used her own experiences (as a person living with lupus) to teach others with chronic illness how they could redesign their lives, so they could live them better. She encouraged patients to take pride in things they could still do and discouraged them from making excuses, getting angry or feeling apologetic about things they could no longer do.

Pick your battles

Many people don’t think twice about making snap judgments or remarks that are inappropriate or impolite—sometimes, even compliments are meted out without discretion or understanding.

There is a difference between telling someone that they look nice today or they are glad to see them and putting undue emphasis on “but you look so great” or “you don’t look sick.” It may be easier and better to overlook these sorts of remarks from strangers, by chalking it up to their ignorance or ill manners; however, people who are closer to a patient might do the same thing.

Anyone who bears the burden of illness on a daily basis will need to pick their battles wisely and not feed more energy or emotions into situations than they warrant. A simple honest reply may do, or using a little humor or creating a couple of clever quips can help patients end the situation in a way that can also let the other person know they made a faux pas.

When others cross the line

But there will be times when what is said by another person will be unacceptable, totally unfair or inaccurate—these should be addressed, to the best of the patient’s ability. While some may find they won’t be able to say anything on the spur of the moment, these situations can be turned into an opportunity to educate the other person. Respond in an honest and unapologetic way that speaks to the heart of the matter.

If the other person still does not get it, then it would be reasonable for the patient to remove themselves. Sometimes the other person could be someone’s doctor whose remarks or conduct was very dismissive or in some way, offensive. One option is to send a letter to the doctor about the incident after the patient has had a chance to quietly digest and reflect over the details of the incident. [But the patient shuld be aware that the letter will be made part of his/her record.]

The worst thing that patients or anyone can do is to respond by lashing out and/or stooping to the level of the offender.