Have you heard of the term ‘medical gaslighting’? It refers to “when healthcare professionals inappropriately disregard or downplay a patient’s symptoms or blame them on psychological factors,” according to licensed clinical psychologist Matthew Boland, PhD. I recently posted about this term on my Facebook page and so many of my friends and followers had personal stories about their experience with the medical system as it relates to this form of gaslighting.
From my experience as a Certified Integrative Nutritionist, I can say that I hear about this happening from my female clients all too often. Examples of medical gaslighting include:
- Brushing off your questions or experience with pain or health problems;
- Your doctor claiming something is more ‘in your head’ than an actual health problem;
- Your doctor disregarding the severity of what you are explaining and rushes you through your appointment.
In the last nine years, I have lost both of my parents. As part of the process with both of their illnesses, advocating for them and learning how to navigate the medical system and support options for families was beyond difficult. Thankfully, our parents had us, their children. But what about people who don’t have kids in the same city as them? Or people who don’t have kids at all? Or people who don’t feel comfortable asking questions? Or people who don’t even know what questions to ask? These people are getting left behind. And if you’re not advocating for yourself in our current medical system, you’re screwed.
I wanted to write this blog to offer some advice to those of you who are trying to get medical attention that you feel you are missing, and for those of you who are helping your parents. I wish I knew then what I know now as there is definitely not a handbook for help.
- If you feel your doctor is gaslighting you, SWITCH DOCTORS. Your GP should be like the quarterback for your health. If you are dealing with blood work, specialists, scans, and wait lists, your GP should be the doctor who is getting all of the results and managing the ‘team’. But remember, you are also on the team. And you need to be a team player. If you GP isn’t on your team, find someone who will be. I had to help my father find a new GP in the thick of his medical and health issues due to inadequate care and gaslighting that was beyond comprehensible. It is possible and it makes a world of difference.
- ADVOCATE for yourself. What does this mean? It means that you are going to have to spend some time on the phone, doing follow-ups, asking questions, doing your own research. Yes, it would be great if there was a central filing system so that when you are in the hospital every doctor, nurse and specialist could see a snapshot of what your health has looked like over the last five years. But that doesn’t exist right now, so you need to be that system. And this goes for support mechanisms as well. If my sister added up the hours that she spent organizing and ‘dealing with’ homecare for our father, it would be a full-time job and then some. Do not leave things up in the air. They won’t land – you must advocate for yourself 100%.
- ASK QUESTIONS. The night my mom was diagnosed with terminal cholangiocarcinoma I went home and read as much as possible about this disease. I joined a group online to ask questions about people’s personal experiences. I joined the official research organization mailing list so I could have the most up to date information about the disease. I compiled a list of about 10 questions to ask her oncologist the next day that were educated questions. Asking doctors about things that you can find out on Google is wasting their time. Ask questions that you need answers to that you can’t find out on your own. Know the language. When I brought that list to the hospital my dad told me ‘not to question doctors’ – he is from an era where you don’t ask questions. I am not! And the doctor answered all of my questions respectfully. AND he came back later to tell my dad he was impressed with me and the questions I had for him. When a doctor is on your team, this is what happens.
- As mentioned above, you need to be the filing system. If you rely on your memory for what happened and when, forget about it. Purchase a journal and every time you have a doctor’s visit, blood work, a scan, an MRI, anything – write it down. The date, the results, who it was with, why it happened. Also, if you are going to a doctor with an issue that you need to explain, you need to explain it well. Walk into the doctor’s office with notes on how often the pain is happening, how severe it is, where exactly it is, when it happens most often. If you have done the work they are much more helpful because it is not a guessing game to them. They will take you more seriously. Below are two downloadable example charts of things you could use for your documents:
Sometimes we don’t know what resources are available to us, or how to access them. If you are dealing with a health issue or are helping your parents as they age, your first step should be to speak with your doctor. Let them know what the issues you are facing are. Go to the doctor visits with your parents. Let the doctor know what struggles are really happening – both for your parent and for you as a support person. They should be able to point you in the right direction of who to call for things like home care, financial aid, meal preparation options and the list goes on. But if they do not know that this is a struggle, they can’t help. YOU need to ask the questions as unfortunately they won’t just offer up a binder of support options.
My biggest piece of advice? Stick up for yourself (AND YOUR PARENTS). Be organized. And if you want to speak with me about things that are going on, I would be happy to chat! My goal in work and in life is to help people be the healthiest they can. It takes work. Let’s get to it.