Nov. 19, 2001 -- Raven Erebus lived with symptoms of endometriosis for more than a decade before she finally found help. "I vomited constantly and experienced severe cramps and bleeding, but my doctors told me I was just trying to get attention and should see a shrink."
Finally a friend told her about a clinic with special expertise in women's issues. "When the doctor there examined me I started crying because at last someone believed me," says Erebus, a 31-year-old living in the San Francisco Bay area.
Unfortunately, her experience is all too common. People with chronic, difficult-to-diagnose illnesses often face doctors who don't take their symptoms seriously, as well as friends and co-workers who think they're over-dramatizing their problems.
Holley Nowell has lupus and hypothyroidism.
"I could write volumes about the doctors who treated me like a hypochondriac until I finally found one who recognized what I have," she says. "You just have to visit different doctors until you find one who listens to you." Nowell, in her late 40s, lives in Houston.
Many women with chronic illnesses feel doctors and insurers don't take them seriously because they're women. But Thomas Sellon (not his real name) has coped with similar problems.
"The first hint I had hepatitis C came during a routine test for people who work with hazardous materials," says Sellon, an Oregon chemist in his early 50s. "At first my insurance company refused to pay for additional tests needed to confirm the condition, and my doctor didn't discuss potential long-term consequences of the disease. Fortunately, I was able to seek additional information on my own, and my current primary care doctor and gastroenterologist are first-rate."
"You have to believe in yourself. Be persistent when seeking care," says Erebus.
That's good advice, says Stacey Taylor, MSW, LCSW. "You have to believe in yourself, because the world isn't going to believe in you. Doctors will sometimes doubt your symptoms, and so may your mother or your boss. Don't blame yourself; acknowledge that your symptoms are real."
Taylor should know. For the past 10 years she herself has been dealing with fibromyalgia, chronic fatigue syndrome, and several autoimmune problems. As a psychotherapist in Berkeley, Calif., she specializes in clients who also are coping with chronic illness, and she's co-author of the book "Living Well with a Hidden Disability: Transcending Doubt and Shame and Reclaiming Your Life."
Many conditions require 8 or 10 years before an accurate diagnosis can be made, she says. "Symptoms can be vague and ambiguous, and it takes a while before tests show clear results. Meanwhile, doctors are under a lot of pressure and often don't have time to ask all the questions and run all the tests."
How Much Should You Say?
When you have a hidden illness, people often don't want to know how you're feeling, Erebus says. "When someone at work says, 'Hi, how are you?' they really mean 'hi' not 'how are you?' They don't want to know how you really are, because they don't know how to deal with it."
Your boss needs to know your situation, and also the human resources person who deals with emergencies, but not the whole department, Nowell says.
Sellon, too, has been cautious about discussing his illness at work. "I told my boss, 'I want you to know what I'm up against, but it's just between us.' I don't want everyone at work to start associating me with illness, instead of my professional role."
Taylor recommends discretion when discussing hidden disabilities at work. "Be especially careful during a job interview. If you mention special health needs, employers may discriminate against you. Once you're actually on the job, if you find you need special accommodations, open a discussion to see if you can get what you need without formally demanding it."
It makes sense to work even while you're in pain, Erebus says. "Keeping busy takes your mind off it. One friend at work was coping with cancer, and we could talk frankly about our situations. We didn't pity each other, we could let it all out, and sometimes we came up with useful suggestions."
It's important for anyone who's coping with hidden disability to find some form of support, Taylor says. "It may be therapy or a support group or a chat room on the web or a book. You do need some way to connect with other people who can share your experience."
When people with hidden disabilities use a special parking space, it can prompt criticism from casual observers. "It's happened to me a number of times," Taylor says. "Once someone called the police and complained." Her advice for these situations: remain calm and briefly explain your situation. "Say, 'I understand your concern, but I do have a disability even though you can't see it.' However, you have to assess each situation. If someone is screaming at you, just walk away."
Grieving the Losses of Hidden Illness
Expect to deal with a huge amount of grief when you have chronic illness, Taylor says. "It's similar to losing a loved one. You lose your abilities. You lose your sense of who you are in the world. I used to be an outdoors person, a fitness fanatic, and now I can't do that. There are financial losses, relationship losses. You have to take time for grieving, just as you do when someone close to you dies."
One of the most difficult aspects of hidden illness can be dealing with family and close friends. "They may not understand what you're going through. They may think you're weak, because when they have aches and pains they don't need special help," Taylor says.
"My family and friends don't understand when I'm too tired or just not able to do things with them," Nowell says. "My son has never been sick and he just can't understand my situation."
For a year, Sellon went through interferon and ribavirin therapy, which is very draining. "My brothers and sisters didn't understand why I had to be by myself. One sister sent me emails saying 'have you forgotten about me?' She couldn't understand that on some days I didn't have energy to walk across the room. People want you to fill the same roles and meet the same needs you've always done in the past."
Keep in mind that just as you need to grieve the loss of your former self, your loved ones are going through a grief process too, Taylor says. "They want you to be the same person you've always been, and you're not. Even though you may not look the same, or be able to do the same things, don't put yourself down. Remember that who you are goes beyond your identity as a worker and a doer."