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 have tested their limits and made 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.
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 (e.g., much like the timeless message in the Serenity Prayer by Reinhold Niebuhr).
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.
Realistic expectations are linked to time—the period of time when a patient tends to feel or function at their best. This window of time should be spent on high priority tasks or something meaningful to the patient—time is a precious commodity which needs to be used judiciously.
Initially, patients may be quite concerned about their public persona, especially while they are learning to adjust to life with a chronic illness. They may struggle to redefine themselves because many were recognized primarily for their line of work—now what?
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.
It is understandable that someone's situation can become very discouraging and when that happens, professional counseling or intervention could be very helpful. The choices that patients make will most likely be reviewed and readjusted to accommodate changes in the illness.
Another word of caution to patients has to do with patient's dependence on others. 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
Nowadays, 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.
People who are ill will typically become flabbergasted by these unexpected remarks and many won't be able to say anything on the spur of the moment. Depending on the individual, this can be turned into an opportunity to educate the other person, by responding 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 with their offensive remarks and/or stooping to the level of the offender.
Unspoken etiquette on social media
Since many people with chronic illnesses are involved in various online communities, it is important to address the need to be internet savvy. The internet is a wonderful resource for information, support, one's leisure and entertainment.
Social media allows housebound people to stay in touch with friends and family, but few might be aware of the "unspoken etiquette", especially on places like Facebook. Take parents, for example, who might be accepted as "friends" by their adult children on Facebook and assume this is a "warm welcome" for ongoing interaction with their kids on Facebook; well, it really is not (in most cases).
Adult children want to maintain their privacy, even on a social networking site, and use it as a place to primarily "hang out" with their peers. They won't be too thrilled to have their comings and goings be followed and "liked" by their parents.
Some things are implicitly viewed as being taboo, which include too many comments being posted by the parents on their kids' Facebook wall; clicking too often on the "like" button (which leaves the impression that Mom or Dad are watching their activity a bit too closely); "tagging" their adult children (or anyone else, for that matter) in photos without permission; and posting private family plans, news or other information on Facebook.
These features, "like", "tagging" and "share" are just some of the built-in tools on Facebook, which actually help to broadcast and/or further circulate a post or picture—in other words, these highlight activity on timelines, profiles, and in news feeds by the links that are automatically created and travel with the post or image.
When one stops and thinks about it, Facebook provides a window into the lives of adult children, relatives, friends, neighbors and other people which, in real life, does not readily exist. How much does it really matter to know what one's friends or neighbors are having for supper?
Some other things to consider is the amount of time spent in online communities, social media sites, or playing games. Whenever someone posts a comment or photo online, they may be hit with a slew of responses.
A lot of time can slip away, looking at the feedback and keeping the virtual dialogue going. It might be a good idea to monitor this and determine if some of this time should go to more essential things. Patients might also consider taking a social media sabbatical every couple of weeks.
People tend to be less reserved in what they blurt out on the internet than what they might say in person and this also applies to patients.
What one does online, stays online!
Social media is not a good place to vent one's personal issues, to post ongoing complaints or frantic comments, and to reveal too much information. Everyone's internet activity leaves digital footprints and a trail that others can easily follow, track someone's activity or interests, and/or end up in unknown destinations.
For instance, when someone "likes" a product or a business, the web browser will send information about that person's visit to a website. That person becomes automatically linked to that site and they might be displayed on that site or in their news feed.
People may not realize how a click here and there, has the potential of making them quite visible and getting targeted for a lot of unsolicited ads.
Overall, social media, message boards and blogs are "good things" providing people use these with a basic understanding of how things work as well as discretion and moderation.