“I was sitting in my car after my check-up when I saw my arm and literally face-palmed,” says Natalie H., of Miami, Florida. It wasn’t until that moment that she remembered she had taken off her jacket to get her flu shot — the shot she never ended up getting. Due to treatment for fibromyalgia, it’s vital that she keeps up on her vaccinations and that was a major reason she’d scheduled the appointment.
“The funniest part was that my doctor didn’t remember either,” she says. “We had such a good time chatting that we both forgot the purpose of my visit. I wish I could say that’s the only time that’s happened — but it’s a pretty regular occurrence for me, unfortunately.”
That’s just one example of the all-too common “parking-lot phenomenon” — when you get to your car and realize you’d forgotten to tell your doctor something … or perhaps withheld information on purpose during the appointment and now regret it.
It might be as low-stakes as forgetting to ask about a medication refill (which can usually be easily addressed after the fact), but sometimes it’s a big enough issue that it can impact your care, says Orrin Troum, MD, a rheumatologist at Providence Saint John’s Health Center in Santa Monica and faculty member at the Keck School of Medicine at University of Southern California.
“We can’t offer you the best care unless you tell us everything,” says Dr. Troum. “We’re not there to judge you — we’re there to help you.”
What’s Behind the ‘Parking-Lot Phenomenon’?
Here are four possible reasons chronic illness patients might forget or omit information during their physician visit.
You’re too embarrassed to bring it up
Substance misuse, eating disorders, sexual issues, mental illness, poverty, big life changes, and other major concerns may feel shameful or embarrassing to talk about, but it’s important that you don’t hide anything from your care provider.
You’re worried your doctor won’t like it
Perhaps you’re not following the diet they recommended, doing your physical therapy exercises, or taking your meds as directed, or maybe you’re taking supplements you found on the internet — there are many things patients do that go against their doctor’s orders. But if you’re having a hard time following your treatment plan or think you’ve found something else that can help, it’s essential you talk to your doctor about all of it — even if you think they may not be happy about it.
You don’t know how to ask about it
Patients, especially when newly diagnosed, are inundated with information. This can get overwhelming and it’s hard to know what you don’t know. You may have a gap in your knowledge or a question you’re not sure how to ask. You may even hold back because you’re afraid of sounding “dumb.”
A lack of understanding can lead to serious mistakes so even if you’re unsure, keep trying to communicate with your doctor about it.
You just forgot
This is the most common reason and the one most easily fixed. “We’re all human, we don’t expect you to remember everything,” says Dr. Troum. Sometimes, like in Natalie’s case, your doctor forgets, too.
You don’t think your doctor will be able to help
Maybe people don’t bring up mental health or weight loss because they figure their doctor can’t really do anything to help them.
What Patients Say
To help you avoid your own face-palm in the parking lot, we asked patients and doctors about things they have forgotten or didn’t bring up, along with tips to make sure you get all the information you need at your next appointment.
New symptoms or side effects
Chronic pain is such a part of Natalie’s everyday life that she wasn’t sure it was even worth bringing up the new pain in her shoulder to her doctor. But later that day, when it began to radiate down her back, she wished she’d mentioned it and asked whether it could be connected to a change in her medication.
Sammy S., of Fort Myers, Florida, who was diagnosed with arthritis in her spine and fibromyalgia, talked to her doctor about next steps but forgot to ask for an overview of her entire treatment plan. “It would have been nice to have an idea of what medical treatments, surgeries, medications, and therapies I was going to need down the line,” she says. “I thought it was going to be a much simpler process than it actually was. I wasn’t prepared.”
Discussing her current exercise routine and how it might impact her disease progression and treatment was something that Sammy says she wishes she’d thought of sooner. “I consider yoga a medical necessity, it helps stretch my back and takes some of the pain away,” she says. “I wish I would have asked my doctor at that first appointment how often I should exercise and how to do it safely.”
Ami P. of Cheyenne, Wyoming, has rheumatoid arthritis and fibromyalgia — but it wasn’t until after she left her doctor’s office that it occurred to her to mention any other illnesses that could be related to her autoimmune condition. “I’ve since discovered that my eczema, leaky gut, candida overgrowth, rashes, insomnia, cold intolerance, fatigue, and a variety of allergies are all likely related to my RA,” she says. “These have all affected what treatments and medications I need.”
Eating an anti-inflammatory and allergen-free diet has been critical to controlling Ami’s symptoms — something she wishes she’d talked to her doctor about sooner. “I could have started the diet even while we were waiting for all the test results to come back,” she says.
Stress and flare-ups create a vicious cycle for Ami. “When I get stressed out, I don’t sleep and I feel the pain more and my illnesses get worse,” she says. “I wish I’d talked to my doctor about how stressful this was and how to manage it — but I was trying to put on a brave face.”
“My job is really physically demanding — I’m a landscaper — and in hindsight that would have been good information to tell my doctor,” says Josh A., of Austin, Texas, who has ankylosing spondylitis. Doing his job directly contributed to his pain and other symptoms, which in turn limited his ability to work.
Josh had several trips planned that he forgot to tell his doctor about. This impacted his ability to get his medicine shipments on time and he ended up having to cancel one trip and shorten another vacation to accommodate treatments. “If I’d told my doctor up front about my travel plans, perhaps we could have worked out something different or she could have helped me see it wasn’t realistic,” he says.
“I’m overweight because I eat too much junk. I also smoke. I’m not proud of either, so I didn’t tell my doctor right away,” says Collette B., of Melbourne, Australia, who has psoriatic arthritis. “But looking back, I really should have.” Your instinct may be to hide unhealthy habits but these are things doctors need to know from the beginning as they can affect your disease progression, symptoms, and treatments.
Collette has a severe phobia of needles that can make her faint or become nauseous when getting injections or blood drawn. “After my doctor sent me down to the lab, I realized I should have brought up my fear of needles with him,” she says. Fears and phobias are something your doctor can help you manage so it’s important to bring them up early.
“I’m a gay man and I don’t always have the safest sex,” says Benji A., 48, who has inflammatory arthritis. “At first I didn’t think to tell my doc, honestly I didn’t think my sex life was any of his business, but it turns out my medications suppress my immune system making me more vulnerable to all kinds of infections [like herpes].”
What Medical Professionals Say
Communication is the key to a good doctor-patient relationship so knowing how best to communicate with your doctor — and how they can best talk to you — should be a top priority, says Dr. Troum. We asked our rheumatologists and a rheumatology nurse to share the things that patients usually forget to discuss with them during their appointment (but they wish they would!).
Most questions can wait to be answered through email or through a call the next day but there are some situations, specific to you, that require urgent or emergency care. Ask your doctor about their after-hours phone number and procedure in case you have urgent questions, says Dr. Troum.
Many patients come into their appointment panicking about the worst-case scenario for their disease but negative thinking will make your experience with the disease so much worse, says Alexis Ogdie, MD, a rheumatologist and Assistant Professor of Medicine and Epidemiology at the Perelman School of Medicine at the University of Pennsylvania.
Don’t hold in your fears; talk to your doctor about your prognosis. “We can help you have realistic expectations and address any inaccuracies you read online,” she says.
Treatment for arthritis and other chronic illnesses can get very expensive, fast, but there are some resources to help patients deal with their insurance company and help with bills, says Annette Hetzel, RN, a nurse manager who supervises rheumatology nurses.
One of the first things you need to think about is all the medical costs, including insurance premiums, prescription medications, and doctors’ copays. Don’t forget indirect costs, including physical therapy, special foods, supplements, assistive devices, and any lost income from an inability to work. Talk with your doctor (or their office staff) about your budget, what resources they have, and ways to manage the costs.
You will likely need several follow-up appointments and you can make them in advance, while you’re still in the office, says Hetzel. “We’re happy to help you do this — and this way you don’t have to worry about forgetting or scheduling delays,” she says.
How to dispose of medical waste
“One thing people forget to ask about but need to know is what to do with the needles, tubes, patches, and expired medications leftover from their arthritis treatments,” Hetzel says. You shouldn’t just throw those things into a trash can so it’s important to ask your doctor what to do.
“Some offices will send you home with a medical waste container for needles and you can bring it back with you to your next appointment,” she says. “Others may have special bags they want you to use or particular instructions to follow.”
People with chronic diseases are at a high risk for isolation and this can hurt you mentally and physically, says Dr. Ogdie. Before you leave that initial appointment, ask your doctor about online or in-person support groups for people with arthritis. Most clinics keep up-to-date lists and some even run their own groups, she adds.
How to Get Your Questions in When It Counts
Coming prepared to your appointment is essential to making sure you cover all the important topics and get all your questions answered. Here are some tips for getting organized:
Bring a loved one to your appointment
Many autoimmune or inflammatory chronic illnesses have cognitive symptoms like brain fog, trouble concentrating, and short-term memory problems — which is why it’s crucial that you don’t show up solo, says Dr. Troum. “I always recommend you bring a friend, partner, or caregiver to your appointment with you, especially those first appointments. They can help you remember information and ask questions you may have forgotten,” he says.
Write down your questions
Another way to make sure you get all the answers you need is to come into the appointment with a list of your questions — and take the time to actually write them down or dictate them into your phone, says Dr. Troum. Prioritize your list so you ask the most important questions first, in case you run out of time.
Come on time
“It’s hard to answer all your questions if you are late to the appointment, so please be on time and prepared,” says Dr. Troum. If you have more than three or four questions, let the staff know when you are making your appointment so they can schedule a little extra talk time.
Sign up for the patient portal
Communication with your medical team is key in treating chronic illnesses and a great way to do that is by signing up for your doctor’s patient portal at your first visit. You can see your medical records, make or change appointments, ask questions, get lab results faster, and find additional resources. “These online portals are one of the best tools we have to empower you in your own care,” says Hetzel. “It can feel like one more thing to do but it’s worth the extra few minutes.”
Talk to your pharmacist
Pharmacists can provide a wealth of information when it comes to how to take your medication, how to store it, how to dispose of it, potential side effects, insurance coverage, and tips to make it easier, says Hetzel. If you have a question specific to your medication, feel free to ask to speak to the pharmacist when you pick up your meds or give them a call.
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