Invisible Disorders

Why Seeing is Not Always Believing



Has someone ever said to you, "You look great!" while inside you felt fatigued or were in profound pain? People who live with ongoing pain and chronic health challenges face this sort of dilemma every day. Because chronic pain does not manifest outwardly, people sometimes have a difficult time believing that a person with a healthy appearance and lively demeanor can be experiencing so many profound symptoms and limitations.


Well-meaning acquaintances and family members who say, "But you look fine," can often unleash a sense of anger or compound the feelings of isolation in those of us who live with physical challenges that are hidden from view. It would be nicer to hear, "I cannot imagine the difficulties you are experiencing. You are incredible!" or "I didn’t know you were dealing with such challenges. How can I help?" or "You certainly make it look easy, but it must not be easy at all." Acknowledging the condition, rather than belittling or dismissing it, is always welcomed.


Unfortunately, no instruction book exists to guide people living with such ongoing challenges. People with chronic symptoms must sometimes learn to adapt to new routines or limitations. There was a time in our lives when we would promptly recover from illness, but now we find ourselves 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 experiencing decent health and a prompt recovery.


Living with Pain


For some, the most challenging aspect of living with ongoing pain is not having control over whether or not we will have a nice day. It is sometimes impossible to make plans, commit to vacations, or even take a trip to see a movie. This lack of control over symptoms can leave you feeling as though you live within the body of an unpredictable stranger. 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 pain.


Many individuals do not give in to their pain or illness. When faced with strenuous situations, they tend to push themselves beyond their comfort level. As a result, they 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 those whose lives are invaded by pain. We tend to move beyond our comfort levels into a more psychologically comfortable space so that we appear normal and perfectly capable. Over time, we must learn the fine art of managing our condition and learning to say no to many of the activities and chores most people take for granted.


Some people who live with chronic conditions and the associated limitations grow tired of being tired. They sometimes decide to challenge their limitations or override their limitations 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 your 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.


You must always remember to get past the guilt that is sometimes associated with taking frequent rest periods during the day. 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 a while? How can I save my energy? How can I reshuffle the responsibilities before me so that I can maintain my stamina? If you don’t alter your life in significant ways by juggling, pacing, and simplifying activities, symptoms can become even more difficult to manage.


The Invisibility of Pain


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. Society is simply not attuned to the needs of 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.


But, what happens when the person who appears healthy, energetic, and just fine to family, friends, and coworkers, is quietly suffering with chronic pain? Often, they simply learn to play the part of being pain-free. "Sometimes I think I should just go into acting," Shawna laughs. She lives with the painful symptoms of endometriosis 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 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."


"It’s discouraging and demoralizing to be in pain every single day," says Peggy, who lives with the chronic symptoms of fibromyalgia. It is one of many heterogeneous illnesses, meaning that each person may experience the same disorder in a variety of ways. "Sometimes I become overwhelmed with the pain. It wears me down and takes a lot of explaining because most people cannot relate to being in pain all of the time."


Chronic pain is real. Yet it is sometimes 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. "Everyone becomes tired of hearing about how much I hurt, including myself! Some people think I am 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 seems to be 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, or those who require significant pain management, rely on analgesics just as a diabetic depends on insulin. Erica, a mother of three, counts herself fortunate. "I now have a good doctor who does not shy away from the issue of pain management. He prescribes the appropriate medication when needed and necessary. I go about my life, but when the disease acts up, I’m not afraid to medicate and then move on."


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 treatments. They deprive themselves of the relief that may allow them to regain a better quality of life.


Learning to Cope



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 a while, 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.


People who live with concealed disorders talk in terms of good days and bad days. Performing one major task per day helps many people to 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.


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 other’s lives.


Delegating is a crucial survival skill to develop. This is often difficult especially if you link self-worth to tasks completed. For instance, if you live with chronic back pain or fibromyalgia, you may have difficulty asking the grocery store bagger to assist you to the car. Accustomed to being self-sufficient, many with pain may equate help with weakness and the loss of dignity. They desperately want to remain self-sufficient and resist 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.


You Are Not Your Pain


But what is chronic pain really like to live with? If you have not experienced it, it is difficult to describe such a steadfast companion. Albert Schweitzer once said, "Pain is a more terrible lord of mankind than even death itself." Many who have lived with chronic pain would echo those sentiments; however, it is crucial to remember that, 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.


Hope for the Future


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 chronic pain 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 particular illnesses and conditions, such as the National Pain Foundation, 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 health care 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.


No one chooses to have a chronic illness or experience unyielding pain. When struck with a disability, people usually feel compelled to return to their former selves and rejoin previous routines. Almost primordial in nature, we intuitively ache for a bygone era when life was predictable and comfortable. To accept a new and limited way of functioning is not very appealing. Why should a person want to live happily in a body that is out of order? There are many who fight an illness or condition that seems resistant to interventions. Some become gifted at taking flight. They ignore and run from a chaotic set of symptoms that has shattered their habitual schedule. Despite the frustrations and various stages of grief, most people eventually move on and coexist in relative peace with their disorder. They learn to dance with the pain using new steps and discover what they can now do rather than think about what they used to do. Having lost the ability to kick up their heels, they learn to tap their toes to a new tune, perhaps a bit closer to the ground.


Carol Sveilich, M.A., is a group facilitator and counselor in San Diego, Calif. 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. Called by many a "support group in a book" Sveilich’s new book, Just Fine: Unmasking Concealed Chronic Illness and Pain, is available directly from the book FREE COPING TIPS are available from the book site. For information e-mail:

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