Patient’s Guide: What to Do When You’re 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:
Understand Your 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:
- What parts of my body are affected?
- Where is the problem and what caused it?
- Will my condition change quickly, slowly, or stay the same?
- Is it contagious or hereditary?
- What specific tests led to my 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.
Identify All of Your Treatment Options
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:
- Does my doctor have experience treating my diagnosis?
- Have I researched new treatment innovations for my diagnosis?
- Is this treatment reducing symptoms or tackling the root cause of my condition?
- What are the side effects with each treatment: both short-term and long-term?
- How will this treatment impact my daily life?
Consider Getting a Second Opinion
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.
Learn More About Your Disease, Illness or Condition
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.
Demand the Right Treatment from Your Health Insurance
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:
- Adverse Tiering – a method used to discourage patients with certain conditions from enrolling in a health plan by placing newer drugs for diseases like cancer and HIV on the highest copayment tier. A 2015 study in The New England Journal of Medicine found that some insurers participating in the state health exchanges placed all HIV therapies on the highest tier, meaning enrollees in these plans paid more than twice as much for their drugs as those in other plans.
- Non-Medical Switching – a practice where the health plan switches patients who are stable on a medication to a different treatment for nonmedical reasons by refusing to cover the therapy any longer or significantly increasing the copay. While insurers use this practice to control costs, patients may experience negative side effects of the new treatment regimen or become less responsive to treatment even if returned to their original medication.
- Prior Authorization – a process requiring physicians and other health care providers to obtain advance approval from a health plan before a procedure, service, device, or medication is given to a patient and qualifies for payment coverage. Prior authorization can lead to delays in treatment. In a 2010 American Medical Association survey of 2,400 physicians, two-thirds reported waiting several days to receive authorization for drugs, while 10 percent waited more than a week.
- Step Therapy – a policy sometimes referred to as “fail first” that requires the individual to try one or more less expensive treatments first and “fail” on them before the health plan will cover the one prescribed by the provider. Step therapy not only delays effective treatment, but multiple studies show the practice increases the costs to the health care system, particularly for hospital and emergency-room care.
Facing a Barrier to Access? We’re Here to Help
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.
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- Become a Patient Advocate: Join our team of patients advocating for health care reforms that put patients first.
- Share Your Patient Story: Tell your story or experience that can help other patients or policymakers understand the patient’s perspective.
- Get Help Overcoming a Barrier to Access: If you are facing a barrier to access, we want to help you overcome it.
Get involved. Speak up. Join the conversation.
About the Author: Jim Sliney, Jr.
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.