A very long list of chronic conditions and symptoms are endured without notice by others – who would readily perceive the problems of someone, say, maneuvering on crutches or struggling with a cast. Dealing with that invisibility, no matter which coping mode you’re trying at the moment, is very hard indeed, writes Carol Sveilich. Following are her observations as someone with ME/CFS & FM – the problems, and coping truths, enriched by the stories of people featured in her book – Just fine: Unmasking Concealed Chronic Illness and pain.*
Has someone ever said to you, “You look great!” while inside you felt fatigued or were in profound pain? People who live with fibromyalgia or chronic fatigue syndrome face this sort of dilemma every day.
Since chronic pain and ongoing exhaustion seldom manifests outwardly, people sometimes have a difficult time believing that a person with a healthy appearance and lively demeanor can have so many profound symptoms and limitations.
Unfortunately, no instruction book exists to guide people living with the easily concealed but often challenging symptoms of chronic fatigue syndrome or fibromyalgia. People who live with these disorders must sometimes learn to adapt to new routines or limitations. There was a time in their lives when they would promptly recover after being sick or feeling poorly. But now they find themselves riding a wave of symptoms that wax and wane and never quite go away. This is a tricky ride to maneuver, especially for someone who is accustomed to having good health and a prompt recovery.
Life turns on a dime when the onset of a chronic illness or condition rears its head.
• Personal and career-related goals that once seemed reasonable become out of reach.
• Former goals must be replaced with more attainable ones, and new lifestyle rules must be developed and adhered to.
• Days are often filled with doctor visits, new medications, and medical tests.
• Social activities and trips are either rescheduled or canceled.
• Jobs are difficult to maintain and are sometimes lost or altered.
• Relationships are affected and altered.
First the body, and then the spirit take a hit as the person adjusts to a new and unpredictable way of living. However, the news is not all bad. There are also benefits to this upheaval. New skills such as flexibility, wisdom, and compassion are learned, and a new resilience and strength can emerge as a result of these disruptions and challenges.
For some, the worst part of living with ongoing pain is simply this – not having control over whether or not they will have a nice day! It is impossible to make plans, commit to vacations, or even take a trip to see a movie. This lack of control over symptoms can leave a person feeling as though they live within the body of an unpredictable stranger. For people who are in the habit of planning a month or a year in advance, simply making plans for activities the next day becomes a challenge and a frustration.
Not surprisingly, Nazi concentration camp survivor and psychiatrist, Viktor E. Frankl, compared his loss of control in prison to that of a person imprisoned in a body with chronic illness. His inspiring attempt to control attitude, if not circumstances, is one that can easily apply to the growing population who live with chronic fatigue syndrome or fibromyalgia.
Well-meaning acquaintances and family members who say, “But you look fine,” can often unleash a sense of anger or compound feelings of isolation in the person who lives with multiple challenges that are hidden from view. The person with a concealed disability would much rather hear, “I cannot imagine the difficulties you experience and still manage to live a productive and meaningful life. You are incredible!” or “I didn’t know you were dealing with such challenges. Tell me more about it. How can I help?” or “You certainly make it look easy, but it must not be.”
Acknowledging the condition, rather than belittling or dismissing it, is always welcomed.
Many individuals who live with CFIDS or FMS do not give in to it gracefully. When faced with strenuous situations, they tend to push themselves beyond their comfort levels. They know from experience that their limitations are not perceived, understood, or even accepted by those around them. Therefore, why should they limit themselves?
As a result, they often pay a high price for overexertion, which often aggravates the condition or illness. Symptoms may worsen for days or even weeks. Sometimes having a good day is simply having a day that is realistically paced.
Honoring limitations is one of the most difficult challenges for anyone with an ongoing health condition. People with CFIDS or FMS tend to move beyond their comfort levels into a more psychologically comfortable space so that they appear normal and perfectly capable to the people around them. However, it’s important to learn the fine art of managing the illness and learning to say no to many of the activities and chores most people take for granted.
Let’s face it. Human nature, for the most part, is visually oriented.
We believe what we see and often make character judgments based solely on visual perceptions. Often, we simply learn to play the part. “Sometimes I think I should just go into acting!” Shawna F. laughs. She lives with a chronic illness and already feels like a seasoned actress. “I should win an Oscar for some of the roles I’ve had to play in trying to hide my pain and symptoms from others.”
Marilyn M. was brought up to do everything for herself. Independent by nature, she certainly does not like to admit that she needs help. “I’m sure I give the impression that I don’t have a problem with pain, and that confuses people. On the one hand, I’m saying ‘I hurt and am tired,’ but if they look at me, they don’t see the pain and fatigue.”
Society is simply not attuned to the needs of these people with easily concealed disorders such as chronic pain. While many feel compelled to help someone with an obvious physical challenge, they may respond negatively when asked to help or provide special accommodations to someone who appears healthy and looks just fine.
People with chronic illness or pain are survivors, and accepting limitations is in conflict with the code that survivors live by. No one wants to live with a painful condition. No one chooses to give up those things in life that bring joy. Yet at some point, people with chronic disorders need to learn to say no to the many things that have always been a part of their lives.
Being told to look on the bright side by well-meaning friends and family members simply adds insult to injury. Positive platitudes and quick-fix suggestions trivialize pain and symptoms and cheapen the impact of these difficult and relentless challenges.
Chronic pain is real. Yet it becomes difficult to talk to friends and family members about it. Not only do people want to be free of chronic pain, they do not want to feel like a burden. “It’s a large part of who I am. I just don’t want to be pitied by my friends or be known as ‘the suffering one’ to those I love or the people I work with,” says Donna L. “Everyone becomes tired of hearing about how much I hurt, including myself! Some people think I are making it up or exaggerating my symptoms. But chronic pain is my reality. Even the medical community doesn’t always take my pain seriously.”
Pain management is at the vortex of incompatible agendas among government watchdogs, insurance companies, doctors, and patients. Fear of addiction is the key issue.
Concerned that the patient will become addicted, doctors are sometimes hesitant to prescribe painkillers. However, individuals with chronic pain conditions such as FMS sometimes must rely on analgesics just as a diabetic depends on insulin. Some people who live with painful conditions feel the need to be stoical about their plight. They see their pain as a sign of weakness, or feel their character is being disparaged because of their suffering, and thus refuse to manage their symptoms with effective medication. They deprive themselves of the relief that may allow them to regain a better quality of life.
Jill V., who lives with CFIDS, is just starting to learn the intricate rules of “the pacing game” and how easily she can try to play catch-up when she happens to have a good hour or day. “Sometimes I start to feel better, get excited, and feel that I should take advantage of feeling better. So I begin to get things done and end up doing too much. I crash, become frightened, and panic that I’ll never get better, let everything go and rest, start getting better, and the cycle begins all over again. I’ve only just learned that instead of trying to get a lot done while feeling well, I need to temper that phase so that I don’t crash. “This is so obvious and yet so hard to do, because it is so exciting to feel good.”
The struggle of pain and exhaustion is a daily concern. Fatigue is a part of many chronic conditions, and making a place for this unrelenting weariness becomes a way of life. After awhile, it becomes impossible to remember what it is like not to feel exhausted. It is important to recognize that you may be able to perform some of your previous activities, but less frequently or for a shorter duration of time. People with chronic disorders can learn to work with their bodies and to recognize their limitations, but it often takes a bit of time and some trial and error.
Families may have to find a new way of playing and having fun together when one member of the family becomes chronically ill. Old hobbies and recreational trips may make way for new and creative replacements. Playing board games rather than camping, for instance, can keep families connected and involved in each others’ lives.
Some people who live with chronic illness or pain and the associated limitations are tired of being tired. At this point, they sometimes decide to challenge their limitations or else let limitations be overridden by the sheer force of their willpower.
Some people have the mental determination but lack the corresponding physical stamina. It’s as if the mind and physical body vibrate at different frequencies and race or rest at entirely different levels. In your mind, you might have all of these ideas or projects that you’d like to accomplish, articles you’d like to write, jobs you’d still like to hold. You are still an energetic person even though you body may not be energetic. It’s difficult to merge the desire to do, with a body that is unable to accomplish what the mind wants to direct.
• The person must always remember to get past the guilt that is sometimes associated with taking frequent rest periods or even naps during the day, as they are sometimes perceived in our society as a sign of weakness.
• The person who lives with chronic symptoms must constantly play the trade-off game. What can I cut today? What has to be done, and what can be shelved for awhile? How can I save my energy? How can I reshuffle the responsibilities before me so that I can maintain my stamina?
• Simplifying a life means eliminating clutter. Large and small compromises and sacrifices can help a person with a chronic hidden illness to carry on more successfully. If it is possible to hire others to cook, mow the lawn, grocery shop, or clean the house, the precious energy conserved dwells in the body’s storage tank for use during the rough patches.
• Delegating is a crucial survival skill that those with CFIDS or FMS must develop. This is often difficult especially if a patient links self-worth to tasks completed. For instance, someone with chronic back pain or fibromyalgia may have difficulty asking the grocery store-bagger to assist them to the car.
Accustomed to being self-sufficient, many with pain or chronic pain may equate help with weakness and the loss of dignity. They desperately want to remain self-sufficient and are loathe surrendering to fatigue and pain. Others, however, may regard such a request as a way to reserve and restore some energy and preclude the most persistent pain. It’s important to keep at the forefront of your mind that learning to accept help can actually be a favor to others.
Accepting help from friends and family may be easier if you look at it in this way: You are helping them to cope. Learning to feel comfortable with a healthy dependency is time and effort well-spent.
Along with delegating tasks, many people with a hidden illness must learn to manage their guilt about not being able to do the things they used to do. If they cannot get to the living room today to pick up all of the old magazines, they can learn to become more flexible.
People who live with FMS or CFIDS talk in terms of good days and bad days. Performing one major task per day helps many people who are ill manage their world, even if only in small bites. Deciding what is a priority and what can wait becomes a new and crucial skill. Pacing and juggling tasks and pleasurable activities become skills that optimize chances for a manageable life.
People who live with FMS or CFIDS frequently believe that they alone live with such physical distress. This perception can, in turn, engender a sense of hopelessness and isolation – even from friends and family. Others who live with chronic pain believe that their value is measured by the number of tasks and activities they accomplish.
By not being able to participate or achieve what they used to, people with chronic pain can be left with feelings of guilt, insignificance, or loneliness. They can become angry, not only at the community of medical professionals who cannot seem to cure them or ease their pain, but also at themselves for being in pain in the first place.
In the end, nothing can compromise your spirit. You are not your pain. You are not your illness. Look at your physical state of health as the movement of the ocean. There will be mighty waves at times, but in other hours or future days, the tide will also recede, and there will be calm periods where you will find relief.
The good news is that we have the capacity to make some issues foreground and some issues background in our lives. This is a choice that we can make all day long throughout our lives.
What part of your illness can you put in the background, if only for a short while? Have a visit with someone you love. For that moment, you can welcome your joy to the foreground, even if only slightly. Keep inviting those inspiring, meaningful moments into your life. Most of the time, life is all about small and precious moments.
The goal is not necessarily to become well, but to learn to accept what life has handed us. It may not always be a welcome gift – this one of chronic symptoms and unpredictable days – but rather an opportunity to learn more about our inner strength and the importance of the people in our lives. It is also a chance to use the gifts within that would have otherwise sat dormant.
Sometimes, learning to be compassionate with ourselves is a far more difficult assignment than caring for others. Fortuitously, chronic physical pain or symptoms often force us to care for and about ourselves in new and profound ways.
Learning to feel hopeful again is a vital stage towards acceptance of our condition and making peace with the pain. Today, there are more beneficial treatments and resources for FMS and CFIDS than ever before. Support groups for specific conditions meet regularly, both in person and online. Camaraderie and information are only a mouse click or telephone call away. Numerous organizations for CFIDS and FMS, such as this one, provide educational information to those with health challenges and to their family members.
There is also a vast amount of research underway. Medical scientists and alternative healthcare professionals are learning to recognize, control, and in some cases prevent, a host of chronic disorders. There are many reasons to feel hopeful if you shift your focus and maintain awareness that the future holds possibilities that cannot even be imagined today.
* This article by Carol Sveilich, MA, is reproduced here with kind permission of the author. Carol is a group facilitator and counselor in San Diego, California. Her background includes conducting support groups for those with health challenges, serving as an academic counselor, and developing newsletters, columns and articles to assist and educate others with chronic health disorders. Although she has ME/CFS and fibromyalgia, she remains an advocate for others who live with chronic health difficulties. Her book, Just Fine: Unmasking Concealed Chronic Illness and Pain, includes 55 in-depth profiles with original photographs and can be ordered at www.writefaceforward.com.