You Are Your Own Best Advocate!

By Michelle Mayer, R.N., M.P.H., Ph.D. (originally published in Scleroderma Voice, 2002 #3)

One would think that I would be well-qualified to navigate the healthcare system. I began my professional career as a nurse and later became a Ph.D.-trained health services researcher. I am also married to a physician.

However, despite all of my and my husband's training and experience, it has been incredibly hard to find my way through the maze. From scheduling appointments to paying for services, the process of obtaining high-quality medical care is fraught with difficulties.

In my opinion, this process is even more difficult for persons afflicted with relatively rare and incurable diseases like scleroderma.

A Struggle from the Start

Without a doubt, my story is like those of many other scleroderma patients. Despite having diagnosed myself with scleroderma one month after the onset of my symptoms, it took 14 months and three doctors to confirm the diagnosis.

Several scleroderma "experts" cautioned me against attempting a pregnancy, although the small existing medical literature had already demonstrated that the majority of scleroderma pregnancies have a good outcome.

And, of course, I have endured all the usual inconveniences and frustrations: long waits to get appointments, followed by long waits in the patient waiting area; cold patient rooms; poor pain control, especially after postoperative procedures; and providers who didn't look me in the eye or shake my hand, let alone listen to my questions or understand my needs.

Not all my experiences with the healthcare system have been negative, but many of them have.

Chronic Diseases Fall Through the Cracks

Much of the system is oriented toward treating a disease rather than a patient. For those among us with incurable diseases that affect many aspects of our lives, this "curative" focus is not helpful in our patient care.

I think that many physicians, faced with an incurable illness like scleroderma, recoil in defeat. They fail to realize how helpful they can be in preventing or minimizing complications and disability, preserving function, and eliminating pain.

First, Properly Orient Your Thinking

I have often wondered how people without the benefit of clinical or research training navigate this difficult system. So I have developed some tips to help you get the most out of your care.

Begin by understanding that scleroderma has the potential to affect your life negatively in two ways:

1) cutting it short; and

2) making it less enjoyable.

Therefore, until a cure for scleroderma is discovered, your medical care should focus on lengthening your life and making your life more enjoyable. Pain control and physical therapy-that is, dealing with the disease's impact-deserve as much of your attention and investment as treating the disease itself.

Practical Tips from My Experience

Now that you understand what your focus needs to be, decide what is important to you. What makes your life worthwhile? What can you not live without? Your medical care should be organized in such a way as to pre serve your ability to live a fulfilling life according to your own standards.

For example, I wanted to have children in spite of my scleroderma. I found that many physicians failed to appreciate the importance of this issue in my life and, consequently, dismissed my needs inappropriately.

1. Learn all you can about scleroderma.

Inform yourself about the disease, existing effective treatments, ongoing research trials, symptom management, etc. The Internet can be a wonderful resource as can other patients with scleroderma. You can also access the medical literature through the National Library of Medicine's web site at http://www.ncbi.nlm.nih.gov/entrez/query.fcgi.

2. Learn all you can about your health insurance.

Whenever possible, choose your health insurance carefully. Obtain the most comprehensive coverage that you can afford. There are many issues to consider, such as:

What physicians are available to you in network and out-of-network?

Can you choose your own provider?

Does your insurance cover ancillary services, such as physical therapy?

What will be your deductible, co-insurance rate, and out-of-pocket maximum?

Find qualified, knowledgeable physicians who perceive themselves as your "partners" in improving your health. Your physicians need to view you holistically—that is, as a whole person, not just as a scleroderma patient. They need to appreciate how scleroderma affects your life and demonstrate a willingness to help you minimize its negative consequences. Your physicians should treat you with dignity and be willing to answer your questions in a nonjudgmental manner. If you're not comfortable with your physicians, find new ones.

3. Ask for what you need.

Redefine your concept of being a "good" patient. You are your own best advocate. Remember, your doctor works for you.

Do not be afraid to assert yourself and ask for what you need. This applies to even the simplest procedures. For example, blood draws are painful for patients with scleroderma. Ask your physician to describe EMLA or Elamax, anesthetic creams that can be applied to the site one-half hour before blood draws to numb the area. You won't even feel the blood draw.

Also, ask the phlebotomist to use a butterfly needle, which is smaller than the needles they typically use.

4. Manage your pain effectively.

Do not live in pain. There are a variety of pain medications available to treat everything from joint pain to nerve pain. You should not have to suffer. If your primary care provider or rheumatologist is not able to or is uncomfortable with managing your pain, ask for a referral to a pain specialist.

5. Screen for scleroderma-related complications.

Work with your provider to develop a schedule of screening tests to ensure that scleroderma-related complications, such as renal involvement, pulmonary fibrosis, and hypertension, are found as early as possible. Do not wait for symptoms.

6. Use therapies to minimize scleroderma's impact.

Use ancillary services, such as physical and occupational therapy and biofeedback, to minimize the effects of the disease and prevent disability. Do not wait for your doctor to suggest these services. Ask for them at the time of diagnosis or soon thereafter.

7. Read your medical bills carefully.

Read your medical bills, because they are often filled with errors. Do not pay bills until you've reviewed them carefully and compared them to the Explanation of Benefit statements you received from your insurer.

Empower Yourself to Lead the Life You Want!

I decided early on in my disease that scleroderma might shorten my life, but it did not have to ruin it. I have managed my healthcare in such a way as to preserve as much normalcy as possible. At times it has been difficult to find like-minded providers who would allow me to manage my care, but I have been able to assemble a cadre of doctors comfortable with this arrangement.

Despite having diffuse scleroderma with pulmonary fibrosis, I live a very fulfilling life that resembles the one I would have wanted had I never developed scleroderma: I have two healthy toddlers, work part-time, exercise daily, travel, garden, and sew.

Had I not been assertive in dealing with the healthcare system, I feel certain that my life would be very different.

Taking control of one's health care can be an exhausting process. If you are too sick to fight for yourself, find a family member or friend willing to do it for you. Know your needs and goals, find a provider willing to accommodate them, and be persistent.