8 Ways to Be Your Own Health Advocate
When you’re dealing with a chronic health condition, things don’t always go smoothly. It’s common to feel that your needs aren’t being met or that your disease is taking control; you may even feel hopeless. There may be times when you need to speak up and speak out for the sake of your health. Self-advocacy provides an opportunity to get what you need, let your voice be heard, maintain a level of control, and feel more empowered as you continue living with your condition.
The eight strategies below can help ensure that your needs get met and that you get the treatment and care you deserve.
Play an Active Role in Your Treatment
Obviously, you can’t prescribe yourself a new medication or perform your own surgery, but you should consider yourself a key part of your treatment team. Taking ownership of your disease and playing an active role empowers you to continue fighting for yourself and getting the care you deserve. That can mean being proactive about doing your own research, asking questions, and asking for a second opinion when needed.
“I ask tons of questions,” says cancer survivor Lissa Poirot of Doylestown, Pennsylvania. “I know doctors don't want patients on Google, but I try to understand everything they tell me, and whenever I go in for appointments, I am armed with questions as well as ‘what-ifs.’ I work with my doctors as a team effort and don’t just do what I am told.”
It has to be a team effort, she adds, because ultimately, she is the one who is sick and these are her decisions and choices.
Doctors and the medical team are there to treat you as a whole person not just the disease. In order do that, you as a patient need to be active in your care by voicing your concerns and preferences, asking questions to clarify things, and doing your own research.
Speak Up About Your Needs
An important part of advocating for yourself is making sure that the people caring for you understand your particular needs. Don’t be afraid to repeat your needs multiple times in order to make sure you are heard.
For Lissa, that means making sure that she requests the most skilled nurse at the clinic to handle IVs and blood draws because of her difficult veins. It also means being insistent that the doctor address her concerns, such as a symptom that may be overlooked.
“Doctors are busy, and as much as they want to help me, they can make mistakes,” Lissa says. “So I have been the most vocal patient I can be. If something isn't right, I know my body and what it's been through, and they don't have time to go through pages and pages of notes. I tell them from the get-go what they need to know about me.” That includes information about previous illnesses, ongoing issues, and information like the difficulty of her veins.
Seek a Supportive Doctor
Having the right doctor is clearly important in making sure that you get the treatment you need; however, you may have to gather multiple opinions before you ultimately find the best doctor for you. Seeking a second opinion, or even multiple opinions, is completely within your rights, especially if you feel the diagnosis is unclear or if you feel your concerns aren’t being heard. You’re the one living with the disease day in and day out, and you shouldn’t be afraid to seek other opinions.
In fact, it took seeing several doctors before Marguerite Dabaie, from Brooklyn, New York, was able to get answers about what was causing her recurrent nausea and vomiting. “After going through blood tests, an endoscopy, a CAT scan, and a breath test, the doctors’ attitudes shifted,” she says. "The first one rattled off all the tests I took and blatantly asked me what else there was to do. The second one floated that this might be cyclic vomiting syndrome but did not offer a formal diagnosis or support."
Eventually, Marguerite was able to find the right doctor who prescribed her medication that helped, and now, she’s more careful about who she chooses to see. “The most helpful thing is to find a doctor who believes you and isn’t okay with you being in pain. That seems so basic, but I’ve had to really hunt for doctors I’m comfortable with.”
Join Support Groups
Support groups can offer another venue for voicing your concerns. “Support groups are extremely helpful, especially with chronic illnesses or conditions that are largely misunderstood,” Marguerite says. “When I want to feel heard, I’m comfortable discussing with a support group that has a higher chance of sympathizing through their own experiences.”
Beyond being able to speak out about your illness, you are likely to feel empowered as part of a group of people sharing a common illness. In a support group, you may hear about different treatment regimens, strategies used to navigate insurance companies, or even advice about finding the right doctors for you.
Look for a local support group—your doctor or hospital may be able to suggest one—or ask questions and share tips with others like you right here on in our community.
Get to Know Your Insurer
For many people with chronic conditions, getting treatment covered by their insurers can be extremely problematic. Start by reading your healthcare benefits carefully, and when in doubt, call the insurer directly. When you do, take detailed notes, including dates and who you spoke with.
Jen Singer, a cancer survivor from Red Bank, New Jersey, spent a lot of time on the phone with her insurer when she was hospitalized with COVID-related heart failure. “I actually called while I was in the hospital, to ask if the anesthesiologist was covered, if the surgeon was covered. I wrote down that information, so I had that for later.”
You don’t have to get on the phone when you’re not feeling well like Jen did, but if you get answers as early as possible, you’re less likely to get blindsided by an unexpected bill. Plus, you may be able to make choices you can afford, like asking for a prescription for a medication your insurance covers instead of one it doesn’t.
Write a Script
Before your doctor’s appointments, or before making calls to your insurer or doctor, it may help to write a script of exactly what you want to communicate and what the goal of your visit or call is. That helps ensure you don’t get swayed off topic or forget to mention a key detail, so that you get your concerns addressed. That’s what Jen does before she picks up the phone.
“When you call the nurse manager at the insurance company, many times you are told ‘no, you can’t have that.’ Reading the script may help you get past them.” Similarly, writing a script before calling or visiting your doctor may help you voice your concerns and give you more opportunity to have your concerns met.
Control Your Emotions
It can be hard to stay levelheaded—especially if you’re in pain and not feeling like you’re getting the care you deserve. But controlling your emotions can help you get taken seriously. “The moment you get emotional, they start to dismiss you as a crazy patient,” Jen says. “It’s better to hit them with logic rather than emotions.” When you’re feeling angry, tired, or frustrated, you may not be thinking clearly and may not be able to appropriately voice your concerns. It may be beneficial to take a step back and let your emotions pass before continuing your conversation with the insurer or medical team.
Sometimes, appealing to the human side may help as it did when Jen was accidentally left off the appointment roster for her PET scan. She appealed to the radiology staff to give her the scan she needed because it was her birthday. “Those were the magic words,” she says.
Ask for Help
Unfortunately, fighting for what you need can take a lot of precious time. “It takes so many hours, it can be like a full-time job,” Jen says. You may need to delegate some aspects of your advocacy—such as wrangling bills and insurance company debates—to a family member, partner, friend, or even a professional advocate. That extra help could allow you to focus your energy on treatment and staying as healthy as possible.
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