I recently received a text message from a close friend who had been in a recent car accident. She shared how she had seen several medical providers who she felt had not listened to her, had told her that her symptoms weren’t real, and made her feel, frankly, a little crazy.
Thankfully, she persisted and brought her concerns to her primary care provider. There, she found herself believed, with a plan of care and orders to get the services she needed.
Her first experiences were a classic case of medical invalidation. It wasn’t the case that nothing was wrong or she was crazy, as those first providers led her to believe. She wasn’t being heard. Once she did find someone to listen, she got the care she deserved.
Medical invalidation is when patients see a medical provider and their symptoms, complaints, and concerns are regarded as insignificant, unimportant, or even untrue. The severity of this phenomenon varies, but is especially prevalent for people of color, particularly black women, whose pain is often ignored. Personal accounts and research have validated this phenomenon year after year. You can read a great piece here from Harvard Medical School’s magazine.
So, if you do feel like your doctor isn’t listening, you may be right. I have experienced medical invalidation myself. I also use EMDR to treat patients who suffered medical trauma that could have been reduced or avoided altogether if only someone had listened to them at the onset and validated their experience.
How do you cope with this frightening reality? Here are six strategies I encourage patients to use when they can.
First, I remember that medical invalidation is real. Our culture has a god-complex about medical providers, particularly physicians. We see them as infallible, but I try to remind myself they’re flawed human beings, just like I am. They are not always perfect at their job. If I feel unheard and misunderstood, and my attempts at improving communication fail, I assume I am being unheard and misunderstood, not that I’m in the wrong. I don’t give up.
Secondly, I ask providers to give me the clinical reasoning behind their recommendations -or lack thereof. I want them to show me they’ve thoroughly considered my concerns and complaints. As a sometimes anxious patient, I also want them to tell me that they’ve tried to rule out that 1 in 10,000 disease that Google searches have told me I might have, or at least let me decide that I don’t want the invasive procedure it would take to be 100% sure. My son’s pediatrician is exceptionally gifted at this. When he makes a diagnosis or recommendation, he carefully goes through everything it might be. Then he explains to me why it’s not those things, and why he thinks his final diagnosis or solution is the best course of action. Sometimes, he even takes some time as we chat, telling me he wants to think about it briefly while he examines my son. These moments of reflection let me know he is taking my concerns seriously and mulling them over, not writing them off as just another worry from an anxious Mom.
Third, use your social capital. If you have a nurse, physician, or other medical provider in your family or social network, see if you can get a preliminary opinion. Ethically, they cannot diagnose or treat you because you’re not their patient, but they can give you an idea of what exams, tests, or questions they’d ask a patient with your similar presentation. They may also help you identify which symptoms and experiences to emphasize when you see your provider so that your complaints get heard. Sometimes we write off and don’t report symptoms because we think they’re insignificant, like stomach pain or headache, and don’t tell doctors about them because we don’t want to feel like we’re wasting their time or complaining. Use that family friend to help you make sure you’re not missing reporting something critical.
Fourth, ask for another medical provider and persist. As I often emphasize when I help people find a new therapist, you can always fire your provider, whether they are for a mental health concern or a physical one. They’re working in service of you. Most medical practices, insurers, hospitals, and HMOs have numerous providers working for them. Don’t feel heard? Request a change in provider. They’re ethically obligated to make best efforts to provide you with an alternative, if available.
Fifth, consider befriending nurses. Nurses, like social workers, are often incredible patient advocates. They frequently spend more time with the patients than doctors, and are there to help you understand your choices and options. They can provide valuable insights and support, and often advocate for you within the healthcare system. I especially love the travel nurses I’ve been fortunate enough to be treated by, because they’ve been to other hospitals and clinics and know that there’s no one ‘right way’ to approach a problem. They’ll often tell you your other choices, even if doctors don’t.
Lastly, consider doing your research. While we conventionally often discuss the perils of WebMD and self-diagnosis, information is critical to an informed decision. These days, you can quickly get access to professional-grade research articles regarding treatments online. While you don’t want to self-treat or diagnose based on these articles, they may help you ask your doctor or provider more thoughtful questions about your diagnosis, treatment options and outcomes.
Working in the medical and mental health field comes with incredible responsibility and power. Unfortunately, sometimes providers don’t take their obligations to their patients seriously or use their power ethically. One of my favorite things about being a social worker is our Code of Ethics. This code guides our practice and helps keep our obligation to our clients and patients centered. We use our privilege and power only to advance the needs and desires of each family, individual, and community we serve with competence and integrity. Do I think every profession should have to follow our code of ethics? Kind of, but I am, admittedly, very biased.
If you’ve experienced medical invalidation and a subsequent medical trauma and are looking for a therapist to help you recover from the psychological impact, consider reaching out for a consultation. I’d be honored to listen to you, validate your experience and discuss ways I may be able to help.