It’s easy to feel overwhelmed. Here's what every patient should do if you're feeling overwhelmed by a new diagnosis.
It’s easy to feel overwhelmed by a new diagnosis.
What do I do first? Who do I talk to? How do I get my questions answered? Who can I trust to give me the best advice? And how am I going to pay for it?
Take a deep breath. You aren’t alone. Here at Patients Rising, we believe the best resource for patients feeling overwhelmed by a new diagnosis are other patients. You have the benefit of all the patients who’ve blazed a trail before you. They’ve been through this. They know what you’re going through, how you feel and how to help.
You deserve access to the treatments, medications and specialists you need – when you need it. No barriers. No delays. No denials.
Here’s what every patient can do when you’re overwhelmed by a new diagnosis:
After diagnosis, you might feel an urge to get out of the doctor’s office as quickly as possible. The thought of going back can bring a pit to your stomach. It’s all a part of our natural “fight or flight” impulse.
Resist the urge to leave the doctor’s office. You need to ask the right questions that will give you the knowledge and information to identify the right treatment plan.
Dr. Edward Creagan, a cancer specialist at the Mayo Clinic’s campus in Rochester, Minnesota, advises patients to understand the details of your diagnosis. “First, find out the name of the cancer, its size and location, where it started, and if it has spread,” he advises newly diagnosed patients. “Learn whether it’s viewed as a slow-growing cancer or an aggressive one.”
Here are a few questions every patient can ask in order to better understand your diagnosis:
Finally, consider requesting a physical copy of any reports. Every patient has the right to request a copy of reports, which may help you with a second opinion.
After understanding your diagnosis, get informed about your treatment options. Identify all of your treatment options.
Don’t dismiss any treatment options — no matter how expensive or inconvenient. Every patient deserves access to the right treatment as soon as you need it. Your diagnosing doctor or primary care physician can help you understand the options available to you, but don’t stop there. Reach out to other patients to see what’s worked for them and what treatments failed.
Research the latest treatment innovations to make sure that you are fully aware of every treatment that’s out there. For example, many patients with high cholesterol have found remarkable results with a new treatment, PCSK9 inhibitors, which can lower cholesterol without the painful side effects of statins, which have been the standard high cholesterol treatment for decades.
To help you get the right treatment, here are some questions to ask:
If your gut tells you to get a second opinion, you need one.
A patient’s intuition can be one of the most powerful and helpful tools in medicine. According to a recent study, patient complaints about rude and disrespectful behavior are an effective tool for identifying the worst performing surgeons. Even if the second opinion confirms the initial diagnosis, it might open the door to alternative treatment options.
Patient advocate Trisha Torrey of Every Patient’s Advocate says good doctors welcome second opinions.
You can ask your doctor for a recommendation for a second opinion. You can also seek out a physician who has published on the topic, or lists your condition as a specialty.
Another option: get a second opinion remotely. The Cleveland Clinic is a leader in providing second opinions online. Their MyConsult program allows you to share your medical records with specialists there who will render a second opinion that you can share with your doctor.
Getting a second opinion doesn’t undermine your primary care provider. It’s about getting you on the right path to identifying the right treatment as soon as possible.
The best resource for understanding your disease, illness or condition are other patients.
You can benefit from their experiences. You can learn which treatments worked and which failed. They’ll offer advice on how to overcome barriers to access and how to cope with your diagnosis.
Seek out groups that understand the unique challenges of your situation. Stupid Cancer and Critical Mass are the best resources for adolescents and young adults battling cancer. If you’re suffering with arthritis pain, CreakyJoints is your “go-to” resource for help. The National Multiple Sclerosis Society’s first recommendation upon begin diagnosed is to learn more about the condition. To help with that, they offer an education series for patients who have been newly-diagnosed with MS.
If you have a rare disease and you are having trouble finding a support group, the National Organization for Rare Diseases maintains a database of reports for more than 1,200 rare diseases.
Health insurance coverage is confusing. It’s difficult to get answers and even harder to decipher the fine print.
Insurance denials come in many forms. Start by identifying the barrier to access that you’re facing. Four of the most common insurance roadblocks:
Are you fighting your insurance company to get access to the right treatment? If so, we’re here to help. Send us an email by clicking here.
We’re committed to advancing the patient’s voice to the forefront of every discussion about health care. Are you ready to join the conversation?
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Jim Sliney, Jr. is a freelance writer/editor and a student at Columbia University where he studies Creative Writing. He is a Registered Medical Assistant and writes educational and advocacy articles for patients with rare and under-served diseases. Jim volunteers for G-PACT.org where he serves on the board of directors and as Newsletter Editor. He is a native of the Bronx with strong country roots and, like most writers, is working on “a novel”. Connect with Jim on LinkedIn or follow him on Twitter.