5 Ways to Advocate for Yourself at Your Doctor's Office
Part 1 of 2 Chronic illness can make us feel disempowered. The unpredictable and shifting symptoms leading to pain, worry, doctors appointments, cancelled plans and relational and economic impact emphasises feelings of lack of control over our life, body and emotions. With the lifelong disease of cystic fibrosis there are two things that have been the epicentre of feeling more empowered as a person living with chronic illness: self-education around health and wellness; and learning to advocate for myself in any situation but particularly at the doctors office.
You can advocate for yourself in any situation or interaction if you want to and it feels appropriate to you; for me it is closely related to educating others, respecting yourself and your needs, and honouring your boundaries. As a young person with cystic fibrosis I had no idea about boundaries or speaking up for myself – I never knew that I could refuse doctors physical examinations, or ask for a female clinician so that I felt more comfortable having my teenage body examined. I never knew that I could ask as many questions of my doctors as I wanted to, or even refuse a particular treatment if I didn’t want it. Over hundreds of hospital appointments and other life experiences over many, many years I learned that I had every right to advocate for myself with my doctors as well as my partners, friends, parents and employers and it has greatly improved my confidence, self love and my sense of empowerment in living with chronic illness.
Here are 5 ways you can advocate for yourself with your medical team and specialists:
1. Arrange your medical appointments at times and days that suit you, your health and your schedule. I admit that depending on which medical system you are in, this may or may not be possible, but I certainly recommend you to try. If you feel physically much worse early morning, maybe you prefer an afternoon appointment so you don’t feel rushed or extra stress to get to your appointment on time. Maybe you have a job where you feel terribly guilty and uncomfortable asking for time off for medical appointments, so ask if you can have an appointment outside your working hours.
2. If you don’t like your doctor or specialist, ask to see someone else. I think we are all aware that some doctors are just not ‘people persons’ , ie. have a terrible bedside manner and do not know how to communicate or relate well with patients. This can be really off-putting and unpleasant as a person with chronic illness, because you may well feel alone in your illness already, and so a kind doctor that listens can be really important to you and the management of your health. Sometimes we simply are just not a good personality match with our designated doctor, so don’t be afraid to ask for a different one! There are normally several doctors working in the field of your particular illness, so it’s not a problem to be listed with a different practitioner. If your hospital or receptionist make it into a big problem or make you feel guilty for asking this – kindly remind her of your rights and if you need to, ask to speak with the head of the department.
3. Don’t be afraid to ask as many questions as you want. Chronic illness is often complicated and can feel especially overwhelming if we don’t understand what is happening in our bodies or minds. Remember, your doctors are there to help you and treat your conditions, and that is what they are paid for, so don’t be afraid to ask questions – there are no dumb questions, and you have the right to proper care and communication.
4. If you want a second opinion, ask for it. As we know, chronic illness can be difficult to treat and doctors are often semi ‘experimenting’ with your particular symptoms, and they will often admit that themselves. Chronic illnesses and their treatments are not an exact science. If you receive a diagnosis or treatment plan that you don’t feel certain about, you can ask the doctor to either consult with his colleagues or you can ask for a second opinion. This doesn’t have to be as confrontational as it sounds, you can simply voice your concerns and explain that you would feel much happier with another doctor also looking at your case. If the doctor is unwilling to assist in this, you can speak to the reception, the head of the department, the hospital manager or another hospital/clinic.
5. You don’t have to comply with treatments or tests. This can be a bit more of a delicate area, as I have experienced myself in the past and the present. Let’s be clear, doctors do not normally like to be disobeyed or feel like their professional opinion is not right for you. I have had several doctors who have not taken too kindly to my refusal of a particular treatment. I am not proposing that you reject all medical treatment, but I am suggesting that