What to Look for in a Vasculitis Specialist

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by Allison Ross |

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The doctor-patient relationship is unique. A doctor sees you intimately and is privy to your vulnerabilities, both physical and psychological. I’m thankful to have had many vasculitis specialists in the past decade, some of whom have also evolved into trustworthy friends.

For those with vasculitis, your doctor may become one of the most important people in your circle, depending on the stage of your illness. But it’s important to keep in mind their position in both your treatment plan and your life.

A doctor’s role

Physicians have knowledge and training, but they aren’t Wikipedia. They bridge the gap between information and empathy, acting as a human encyclopedia on your disease. They combine ethics and science to ensure your comfort and well-being.

Your vasculitis specialist might have to tell you things you don’t want to hear. As a teen, I visited a pulmonologist we called “Dr. Bowtie” for his quirky choice of attire. He was an extremely kind man, and helped me navigate the intricacies of my new diagnosis with confidence and relative peace.

Unfortunately, he was also the physician whose care I was in when I relapsed for the first time. Tears welled in my eyes as Dr. Bowtie gently explained that my inflammation levels were soaring, and I needed to go back on prednisone, a treatment that had previously caused me an abundance of pain and misery. To this day, I’m grateful for the sensitivity he showed as he broke the bad news and guided me through the next steps.

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Doctors are not caregivers in the traditional sense, but they can provide some level of emotional support. If you feel unsafe or uncomfortable around a doctor, then they are not a good fit. Doctors also aren’t dictators or bosses. They do not control your choices, your finances, or your medical decisions, though they offer reliable counsel.

If you’re unhappy with your current doctor, I urge you to seek another one, if possible. Granted, depending on your location and the specialty, you may have limited options. If you visit a large hospital system for your vasculitis care, there’s a chance there are other available doctors in the department.

A good doctor will …

  • Ask questions beyond the medical chart to get to the bottom of how you’re really doing.
  • Meticulously keep track of your symptoms, labs, medications, and other disease milestones to maintain an accurate “big picture” of your illness profile.
  • Listen empathetically to your concerns.
  • Inspire trust and confidentiality.
  • Encourage and uplift you, even in uncertain times.
  • Apply their general knowledge to your individual situation.
  • Work with you to come up with a tailored treatment plan, and competently follow through.

A good doctor won’t …

  • Make you feel embarrassed or ashamed to share your personal information.
  • Cut you off mid-sentence, or assume they know the answers to your questions before you ask them.
  • Cancel appointments last-minute, causing you extra anxiety and inconvenience.
  • Put you through unnecessary or costly regimens that make you uncomfortable.

Life outside of your illness

A good doctor looks at the whole patient, not just their physical malady. They know that a physical illness can be accompanied by anxiety, fear, grief, and many other emotions that can be difficult to cope with.

Find a healthcare provider who sees you as a human being. Once, when I was going through a wave of personal challenges, my vasculitis specialist called me at home (from her cellphone!) to ask if I was doing all right. She offered me her condolences, support, and guidance, drawing from similar issues she had experienced in her own life. At that time, we weren’t doctor and patient — we were people suffering from shared troubles. Peers. Confidants. Friends.

Lastly, it’s important to remember that because vasculitis is a systemic disease, you may need to see multiple specialists. You might link with rheumatologists, pulmonologists, nephrologists, or others who specialize in certain elements of your disease profile. If you have more than one doctor, ensure that they communicate with one another and then relay their findings back to you for open discussion.

If you have connected with a doctor you trust, you’re fortunate! Having a physician in your corner as you go through tough times with vasculitis can boost your outlook on life and help you feel confident about the path forward. I wish all of you fulfilling relationships with your healthcare providers!

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Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.

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