The healthcare world can sometimes feel intimidating and scary for those living with a chronic illness. We frequent doctor’s offices and hospitals more than others. We go through a Rolodex of potential physicians and providers, just to find the one that will meet every need, without making us feel like just another check coming in. It is not an easy process but it’s necessary if you want to win at maintaining your condition and feel like the empowered patient we strive to be. The patient is the heart of the medical industry. If there were no illnesses, there would be no patients and with no patients, there will be no need for medical professionals. So why is it such a struggle to doctors and providers to be able to listen to the patients? What we essentially want is a provider who can empathize and understand what it’s like to be the patient.
We want the ability to hold educated conversations with our doctors and not get dismissed for having an opinion.
Being a person living with Epilepsy, I understand the cry of other patients who face a chronic illness. We share this universal understanding that not every emergency room or doctor’s office will be equipped with people who can truly pay attention to your needs or show they care. There are so many things this industry can do better but for the patients, it starts with the people responsible for their care. I have such a unique case when it comes to my health. I personally suffer from Partial Onset Seizures. My seizures won’t always show up on the EEG or MRI testing machines. However, my seizures will occur when testing is over. For others who may experience the body limpness or convulsions, they are often stigmatized as being on drugs, melodramatic, or faking their symptoms or conditions. The tone of the people who are not familiar with these chronic illnesses is often dismissive. For the life of me, I cannot understand this. It leaves the question, do they really understand what I am going through or even care to understand?
With all of this in mind, I developed the following tips for doctors to help create a better relationship with their chronically ill patients:
1. Practice active listening.
Doctors are often on a straight shot approach with every patient. There are no one-size fits all way to effectively communicate with each individual patient. To start, acknowledge you are hearing what we are saying. The response is that so, yeah, okay and any other filler is not okay. We have pressing questions that require full answers. No one wants to feel as if they are explaining things and not being heard or understood. I cannot begin to count the number of times I left a doctor’s appointment with more questions than answers. Feeling like it is was a waste of my time and money. It often feels as if the doctor does not want to have any dialogue, just get you in and get you out as quickly as possible. Make it personal, for that particular patient so that they fill comfortable telling you exactly wants going on. A comfortable patient makes a willing patient.
2. Remember – People before Patients.
We are not just patients. If we tell you about our aches and pains, we expect you to look at us as people first. Ease the anxiety of already needing to be in that office or hospital room. We want to feel as if we are getting the same treatment you would give your son, daughter, mother, father or someone you love. Lean in, make sure things are explained in medical terms but also in a way the patient fully understands. Patients need to continue to trust you far beyond the moment of diagnosis. Let us experience the understanding, compassionate side of your work. If someone leaves your office feeling as if you treated them as a number and left confused, they will turn to other means for answers. Google searches often lead to dangerous self-diagnosis.
3. Lead but Listen.
Doctors and providers alike can make or break a patient’s trust in a matter of minutes. When seeking medical advice, we would like for you to lead us into the direction that will better our health and conditions. Ask the patient the difficult questions, give them more than one treatment option, let the patient know there are risks. You know, it’s okay if the patient brings up a new treatment and you are not familiar with it yet. Just reassure them that you will do your best to look into it and give them your medical opinion as soon as possible. All the patient wants to know is that you are doing everything in your realm to treat them. On the other side, allow the patient to challenge you, allow them to ask difficult questions. It could have taken all of their courage to speak up. Be willing to listen to understand.
I know it can feel intimidating when patients seem to know exactly what’s going on with their health and they ask the RIGHT questions. We are not trying to insinuate that we know more than you. We just want to know everything there is to know about our health. Shouldn’t the world be filled with more empowered patients? Wouldn’t it make the doctors and nurses jobs a lot easier? Medical professionals are experiencing burnout at an alarming rate. Allow your patients to help you, help them. We can fix this broken system by not letting pride hinder communication on both ends.
The day I decided to take an active role in my care, was the day my doctors and I built the best plan for me. Patients who take the initiative to learn more about their health can ultimately be the change we need in healthcare. It first takes the willingness of the providers to engage and embrace this change.