The consequence of these two conditions having such similar names is that people with rheumatoid arthritis are likely to be treated as if they have osteoarthritis. This label-confusion is especially hard on young people with rheumatoid arthritis. Several young women have told me that they repeatedly have to listen to hurtful comments, such as “You’re too young to have bad joint pain” or “People your age don’t get arthritis.”
While not considered a fatal illness, rheumatoid arthritis can shorten people’s life expectancy, partly because they are at higher risk for complications such as anemia, lung disease, coronary artery disease, and lymphoma. Chemotherapy drugs (with their accompanying side-effects) are often prescribed to suppress the autoimmune reaction in people with rheumatoid arthritis.
The rheumatoid arthritis community would like to see the name changed to rheumatoid autoimmune disease. This designation would eliminate the confusion that results from being diagnosed with an illness that has the word “arthritis” in it.
Chronic Fatigue Syndrome
Although my cluster of symptoms doesn’t neatly fit the various case definitions for chronic fatigue syndrome (CFS), of the diagnostic codes available to doctors, CFS comes closest to describing my illness, so “chronic fatigue syndrome” is what they put down on forms. The consensus among the specialists I’ve seen is that the viral infection I contracted in 2001 compromised my immune system in some way, and it no longer functions normally. However, there’s no diagnostic code for immune system dysfunction, so chronic fatigue syndrome has become my official diagnosis.
The principal misleading word here is “fatigue.” Every CFS sufferer I know has had to listen to others say, “I’m tired too.” When they hear those words, they know that their illness has been mislabeled; even worse, they know that the stigmatizing label “malingerer” may not be far behind.
The “fatigue” of chronic fatigue syndrome bears no resemblance to the fatigue that people experience after a bad night’s sleep. As many people have pointed out, calling this illness “chronic fatigue syndrome” is like calling emphysema “chronic cough syndrome” or Alzheimer’s “chronic forgetfulness syndrome.” The fatigue of chronic fatigue syndrome is often described as a bone-crushing fatigue. I call it bone-crushing and sickly fatigue. Laura Hillenbrand, bestselling author of Seabiscuit and Unbroken and a CFS sufferer herself, put it this way: “This illness is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterization.”
I feel certain that, were it not for this woefully misleading label, the American Academy of Family Physicians (AAFP) would not have begun its recently released “Patient Information Sheet on Chronic Fatigue Syndrome” with this sentence:
Chronic fatigue syndrome is a disorder that causes you to be very tired.
I am not “very tired.” I’m not even “tired.” I don’t nod off while people are talking to me. I don’t even fall asleep while reading or watching TV. This is because I’m not tired. I’m sick. Among other symptoms, I have the kind of sickly fatigue and malaise that healthy people suffer from when they have an acute illness like the flu — only I’ve felt this way since 2001. I call it “the flu without the fever.”
As of this writing, there’s no known cause or cure for chronic fatigue syndrome. This is not surprising, given that so little money is allocated for research into this debilitating illness. Why is this the case? One reason is the presence of the word “fatigue” in its name. It’s because of that word that an association like the AAFP can say that people with CFS are “very tired.” How can we expect chronic fatigue syndrome to be taken seriously as an illness when its sufferers are described as “very tired”?
On October 15, 2009, one of the foremost experts on CFS, Dr. Nancy Klimas, spoke to the New York Times about the lack of research money:
My HIV patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you, if I had to choose between the two illnesses in 2009, I would rather have HIV.
When doctors ask what’s wrong with me, I can give one of two answers, neither of which is satisfactory in the context of obtaining quality health care for myself or others with a CFS diagnosis. This leaves me in a no-win position in the doctor’s office.
Option 1: If I say, “I’ve been diagnosed with chronic fatigue syndrome,” I’m likely to be discredited as a witness to my own illness. I’ve had doctors tell me there’s no such thing as CFS. One doctor said, “Just drink some coffee.”
Option 2: If I say, “I contracted a serious viral infection and never recovered,” it goes down better with the doctor, but by saying this I’m undermining the effort to bring legitimacy to the illness. And legitimacy brings with it research funding.
A few years ago, I had an appointment with a doctor regarding something unrelated to my illness. The new-patient form asked, “Are you in good health?” I checked “no.” Next question: “If you checked ‘no,’ please explain.” How many times have I faced “please explain” on a medical form and had to choose between those two unsatisfactory options? I’ve lost count. I needed the best care I could get from this doctor so, playing it safe, I reluctantly took option 2 and wrote, “Contracted a serious viral infection in 2001 and never recovered.”
In the examining room, the doctor looked at my form and asked: “What’s this viral infection you never recovered from?” Without using the phrase “chronic fatigue syndrome,” I succinctly explained how a seemingly acute viral infection had turned into a chronic illness, leaving me feeling as if I had the flu all the time.
He listened and then asked, “What’s the diagnosis?” I was cornered. I replied, “chronic fatigue syndrome.” I watched as he disengaged from me. He swiveled on his stool and put down his note pad. Then he turned back to me and, addressing me as if we’d just met, said, “What have you come to see me about today?”
I take back what I said in response to the AAFP characterizing me as “very tired.” I am very tired. I’m very tired of the lack of serious attention given to this devastating illness, due in large part to its ridiculous name.
Restless Leg Syndrome
I was diagnosed with this life-disrupting neurological disorder in the early 1990s, but I rarely tell anyone. I never even told my two children. Why? Because the name is embarrassing. Let’s see how accurately the label describes the condition.
Restless
When I get an attack of restless leg syndrome (RLS), my legs aren’t restless. They are seized by waves of gnawing unpleasant sensations that are so unbearable I’m forced to move my legs to try and get relief. After each wave, the sensations subside, only to return in another thirty to sixty seconds. This can go on for hours. When an attack comes at night (which is when RLS most often occurs), it’s impossible to sleep. The result can be a sleepless night and one very long and unpleasant day ahead.
Leg
Sometimes I get these waves of gnawing sensations in my hands. Others get them in their arms. There’s nothing exclusively “leg” about restless leg syndrome.
The Federal Drug Administration has approved two prescription medications for restless leg syndrome — Requip and Mirapex. You’d think that FDA approval of two medications for a disorder would make it legitimate. Not so. The words “restless” and “leg” are just too silly. A few years ago, I heard a late night comedian make cruel fun of RLS, saying: “And now there’s a drug for restless leg syndrome. Come off it. Your legs are restless? Get a life.” Ironically, I only heard his comment because I was awake due to, yup, restless leg syndrome.
So I’ve come out of the closet: I have restless leg syndrome. On nights when the medication doesn’t work, you’ll find me pacing the floors, willing to try just about anything to keep the unbearable sensations from continuing. No matter how cold a ni
ght it is, I put ice on my feet and calves. Or I wrap my legs so tightly in ace bandages that I have to be careful not to cut off the blood circulation. These home remedies are only marginally helpful because they tend to work only if I catch an attack right when it starts, and RLS doesn’t wake me up until it’s “up and running,” so to speak. That means I’m looking at another night of broken sleep.
The mislabeling of medical conditions causes a great deal of harm. It stigmatizes those who suffer from them and affects the amount of research funding that gets allocated for finding causes and treatments. Many people in the chronic illness community are determined to get these names changed. They are tireless in their efforts, sometimes engaging in advocacy from their beds. We are indebted to these warriors for their dedication and resolve.
39
Letting Go: A Not-To-Do List for Caregivers
We do not heal the past by dwelling there; we heal the past by living fully in the present.
— MARIANNE WILLIAMSON
AS I NOTED in chapter 2, I’ve changed from a to-do list maker to a not-to-do list maker, because I feel better mentally and physically when I pay careful and caring attention to what not to do. I believe that the estimated forty-five million people in the US alone who are caregivers for elderly relatives or for the chronically ill would also benefit from a not-to-do list.
Do not pretend that everything is like it used to be.
If you’re a caregiver, you may be tempted to pretend that everything is like it used to be. But it isn’t. Denying this can lead to bitterness and resentment. It’s better to face it. One day you were relatively free to go out whenever you wanted and hang out with whomever you wanted. The next day, you were tied to the house and expected to understand how to take care of someone who may need help with the most intimate of life functions. This is tough and can severely impact your quality of life. Our society does a poor job of preparing people for this very real possibility. The person in your care needs time to grieve; so do you.
In addition to grieving your loss of freedom, you may be mourning the loss of the relationship you once had with the person you’re caring for. Before I got sick my husband and I did almost everything together, except when we were at work. Now, for the most part, he’s on his own out there in the world. It took several years for him to accept this new life and to find a measure of peace and contentment with it.
If you’re a caregiver, try to recognize that pretending that everything is like it used to be is a way of turning away in aversion from your life as it is right now. This turning away is a form of denial that’s likely to feed a painful longing to return to a life that’s no longer possible for you. This is a recipe for unhappiness.
To find peace with your new life, begin by acknowledging with care and compassion that it’s natural to grieve the loss of your old life. Allowing yourself to feel the sadness that accompanies grieving paves the way for accepting your life as it is — instead of staying stuck in that painful place of pretending that everything is like it used to be.
Do not shy away from sharing with others that you’ve become a caregiver.
Men are particularly reluctant to share with others that they’ve become caregivers. They’re likely to hide it at work. They often hide it from their friends. It’s a sad commentary on our culture that we still haven’t found a way to make men feel comfortable sharing with others that, when they’re at home, they’re taking care of a partner, a sibling, a parent, or a grown child. They’re doing the cooking and the cleaning; they’re running all the errands; they may even be providing nursing-type assistance.
One consequence of caregivers hiding their role is that people who’d be willing to help aren’t aware that help is needed. This can lead to caregiver burnout, which is one reason why caregivers have such a high incidence of clinical depression. The National Family Caregiving Association found that over 60 percent of caregivers who provide at least twenty hours of caregiving a week suffer from depression.
If you’re a caregiver, I hope you’ll talk to others about your life. If you’re the one being cared for, encourage your caregiver to share with others the difficulties he or she is facing. No one benefits from a caregiver “going it alone.” It may take only one friend to make a significant difference in a caregiver’s life: one friend whom he or she can confide in and talk to about how stressful and difficult life has become; one friend whom he or she can ask for help and support. “Troubles shared are troubles halved” is one of those good clichés.
Do not think you have to make the person in your care happy.
There’s a tendency for caregivers to think that one of their duties is to make the person in their care feel good, if not physically, then mentally. If you’re a caregiver, this is an unrealistic assessment of your powers! It’s also unlikely that your loved one expects this of you. I’m grateful when my husband is simply willing to listen to me talk about how miserable I feel — physically and, sometimes, emotionally. I don’t expect him to make me happy. If you’re a caregiver, don’t underestimate how much it means to your loved one for you to do nothing more than bear witness to what he or she going through.
Do not expect yourself to always be up for the task at hand.
Allow yourself to have days when, even though you’re doing what needs to be done for the person in your care, your heart isn’t in it and you wish you were free of the obligation and the burden. In other words, don’t judge yourself negatively if resentment arises now and then. Like everyone else in this life, you’re going to have good days and bad days.
Do not feel guilty when you’re enjoying yourself.
Be on the alert for that Super Caregiver mentality that has you thinking you’re not a good caregiver unless you’re never having more fun than your loved one is. I want my husband to have a good time. It makes me feel better about the drastic changes in his life and about the responsibilities he’s had to take on. As an added bonus, knowing he’s having fun can make me feel good. As I noted in chapter 28 on coping with isolation, Buddhists call this mudita — feeling joy for others who are happy. What I love about this practice is that sometimes feeling happy for my husband boomerangs; it comes back at me so that I begin to feel happy myself, as if I’m having a good time through him.
In 2014, my husband took our granddaughter Cam to see the Harlem Globetrotters. When I was growing up, my dad took me to see the Globetrotters whenever they came to town, so it would have been a treat for me to take Cam. But I couldn’t, so my husband did.
My choice was to be envious and resentful — or to be happy for him. I chose the latter. Throughout the afternoon, I imagined the two of them in their seats — my husband pointing out a dribbling sleight-of-hand that Cam might have missed, both of them laughing at the Globetrotters’ antics, just as I had. The result was that I felt joy myself, especially knowing that my husband was having a good time. The last thing I wanted was for him to feel guilty about having fun with Cam.
Do not be reluctant to share your challenges and difficulties with the person in your care.
Every relationship is different, but sharing your struggles with the person you’re caring for can make the two of you closer. Many caregivers are reluctant to share their difficulties for fear of making the person in their care feel worse. But sharing your struggles and even your sorrows can make your loved one feel as if he or she is giving you emotional support. As a result, not only will you get that support, but the person you’re caring for will feel as if he or she is contributing to the well-being of the relationship.
Do not become isolated yourself, even if the person you care for is housebound.
Caregivers are often as isolated as the person in their care. If this is the case for you, consider asking someone to step in for part of a day so that you can get out in the world for a while. Many communities have respite programs that provide support for caregivers. In my town, there’s an organization called Citizens Who Care that has a program called “Time Off for Caregivers.
” Volunteers come to people’s houses for the specific purpose of giving caregivers the opportunity to go out and visit with other people or do something special for themselves.
There are also online support groups for caregivers that can help to ease your isolation. Connecting with others in this way benefits both you and the person you’re caring for because it puts you in touch with others who understand the challenges you’re facing. This can lift your spirits and renew your commitment; it can also provide valuable information that will make it easier for you to carry out your responsibilities.
Do not neglect your own health.
In chapter 25, I suggested that the person under your care be on the lookout for health problems that you might be developing, and which you might be ignoring due to your focus on him or her. Bottom line: you can’t be an effective caregiver if you don’t take care of yourself physically and emotionally. Ignoring your own health can negatively impact you and the person you’re caring for. Caring attention to what’s going on with you physically and mentally is essential to being a good caregiver for another. It’s an act of compassion for both you and your loved one.
To find a measure of peace in your role as a caregiver, it helps to keep in mind that you cannot fix the person in your care. Doctors can’t fix your loved one, so how can you be expected to? And you also can’t keep your loved one from experiencing life’s ups and downs, including sadness and sorrow.
I recommend that you come up with some equanimity phrases to remind you that, as much as you love the person in your care, you can’t make his or her life conflict- and suffering-free. These are some of the phrases I use when I find myself embarking on the fruitless endeavor to try and fix the lives of my loved ones so that they’ll never have to experience tough times. I hope some of the phrases resonate with you as a caregiver:
How to Live Well with Chronic Pain and Illness Page 23
