Don’t Settle When Choosing Your Team of Doctors

Lisa Weber avatar

by Lisa Weber |

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Many books have been written about finding your true love. Yet, there’s not much guidance about finding the right doctors. I suppose this didn’t matter when I was healthy. Now that I’m chronically ill, the right doctor means life or death.

However, when scleroderma forced me to seek out care from specialists I didn’t even know existed, I didn’t even question who would care for me. I simply did a little internet research, made an appointment, and settled in.

Why do we spend years finding the right person to love and only hours deciding who will hold our life in their hands? Now that I’m a professional patient, the idea of not evaluating doctors after the first appointment is frightening. It’s like marrying someone on the first date!

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When Choosing My Medical Team, It’s All About Attitude

Although everyone’s situation is unique, I hope my experience can help others with scleroderma. Creating the right team of doctors has improved my life tremendously.

Do your research

It is important to find doctors that are qualified to treat your specific disease. When my original cardiologist found a birth defect he wasn’t experienced with, he recommended I see a doctor that focused on that specific issue.

I adored my cardiologist and wanted to continue treatment with him. But he helped me understand that a lack of knowledge in any area would force me to bounce around from one specialist to another. It would delay my treatment. He gave me the best care by setting me free.

Ensuring the doctors you choose actually see patients like you on a regular basis enables you to receive up-to-date care. I know this is much harder when your disease is rare! I’m currently living with six rare diseases. But don’t give up the search. They are out there.

I have yet to find a local rheumatologist that sees more than a handful of scleroderma patients a year. Even though my insurance doesn’t pay for out-of-state doctors, once a year I travel 14 hours to see a scleroderma specialist. She’s my medical team leader. My local doctors do my testing and write prescriptions so they’re covered by my insurance. The yearly office visit is $400, and it’s worth every penny to have her knowledge steering my ship.

Think of the 1st appointment as an interview

Unless you have a common ailment, your first appointment is not just about receiving treatment. If I need long-term care, I come to these appointments armed with a list of questions.

Everyone will have different questions, but I’ll highlight some of my important ones.

Are you open to collaborating with other specialists?

Since my disease is systemic, meaning it affects multiple parts of my body, many of my issues overlap between different specialties. Sometimes one doctor has to wait for another doctor’s evaluation. If they work together, treatment begins faster.

Are you willing to dig deep into the unknown?

When I first became ill, I believed doctors when they brushed things off because they were “rare.” Statistics don’t lie, but I know I’m not making up my symptoms. I want a doctor that is as eager as I am to find answers and solutions.

How easy is it to make new appointments?

Another worthy question on my list: “Will you be available when I have new symptoms?” This is probably my most important one now. In the past, I’ve waited months for appointments while my disease progressed and irreversible damage was done. At the time, I thought, “What else can I do?” I simply accepted the fact that specialists have busy schedules.

But waiting can change my life for the worse. Damage can’t be undone. When my disease attacks, I want to know I can get help!

There are doctors out there that will save appointments for quickly emerging symptoms. They keep these appointments open for the inevitable situations when an illness progresses or you stop responding to treatments. They always find a way to squeeze you into their schedule. But you have to ask.

I get responses from the nurses, office staff, and doctors. Listen carefully. Answers like, “We try” are typically red flags. I want to hear things like, “We make it a priority!”

There’s no guide for finding the perfect care team. Diseases are as individual as we are. But think of it as finding the love of your life. It may take lots of appointments with different doctors until you find the right ones.

Make a list of all the things you think are important in receiving quality care. Bring it with you to every new appointment. You can start treatment with any doctor, but don’t settle or stop your search until you can say, “This is the right match for me. I’m in good hands now!”

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Note: Scleroderma 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 Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

Phil moreau avatar

Phil moreau

Hi Lisa Thankyou for all your life stories and insights.
The right doctors and scleroderma specialists are so very crucial and sometimes impossible to find due to where we may live in this massive world.
Being comfortable with them is just as important and going with your gut feeling crucial.
Personally my scleroderma journey is only 12months old and I'm so fortunate to be under the care of a couple of the best scleroderma specialists in my home city.
The fact that you travel 14hrs is amazing but im glad you have found the best of care.
Your remarkable!
Take care
Phil
Australia

Reply
Lisa Weber avatar

Lisa Weber

Thank you, Phil. Your warm and gentle words are well received. I'm so glad you found great doctors! Best wishes to you!

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Elaine Bycroft avatar

Elaine Bycroft

Well said Lisa, as a former HDC Advocate I had many folk who were afraid to ask for a different Dr. It is your right and is supported under the Code of Rights and, if you're not feeling like you can ask yourself you are entitled to have a support person with you. That person can be anyone you feel comfortable with and if you don't have that person an Advocate can support you. I still give support to anyone who asks me. It is their right to have a Medical person they trust to care for them and also have a support person. DON'T LET ANYONE TELL YOU OTHERWISE. I like your last paragraph especially. It's something I always tell folk to do and do so myself. It saves time and you don't walk out not addressing your issues. My GP puts his hand out for my list, with a smile!!!

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Lois Bouchard avatar

Lois Bouchard

Dear Lisa,

What a great article. I hope Scleroderma patients take your words seriously. Thank you for taking the time to put this in perspective.

Lois Bouchard

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