Written by: Amanda Phillips
For one to have to deal with a chronic illness, it is absolutely overwhelming to find a way to deal with the healthcare system in general. All the doctor's appointments, the insurance issues, complicated treatments-it's just too much for the bad days. One of the best things that one could ever do for his or her health, though, is to take care of one's self. Whether you are recently diagnosed or learning to adjust to life with years of coping with your condition, the art of self-advocacy really helps in getting the right appropriate level of care.
It means using their voice in respect of their symptoms, asking questions, and bringing forward the salient views in a care setting. This is about taking responsibility for one's health and working as an active team member along with the healthcare team to come up with an appropriate treatment plan. The following will be actionable steps in making one empowered and confident in self-advocacy for health.
While self-advocacy is an important quality to keep no matter what, it becomes essential if you live with a chronic illness. Nobody knows your body and symptoms like you do. The health care system often feels impersonal, in a rush, or dismissive, and that's all the more reason to speak up for oneself. In that respect, self-advocacy ensures that one's concerns are taken seriously, one knows the treatment options, and one becomes a central player in decision-making regarding their health.
It is in this absence of self-advocacy, in a system when doctors can sometimes see dozens of people every day, that it can be so easy to fall by the wayside. If you are being proactive, you will make sure your needs are met and that you receive the best possible care.
One of the strongest things you can do, to be your own advocate, is to come prepared to your appointments. Sometimes, when you are living with a chronic disease, your symptoms are different day in and day out, and it is difficult to remember exactly what has happened once you are sitting in the exam room. That is why symptom tracking is such an important thing.
Tools such as the IBD Journal are important in symptom tracking, medication, diet, and your general well-being in instances like this. Writing it down will mean that you have clear evidence of what took place between visits and hence you can inform a discussion with your health professional. The second important thing you provide through documentation is giving the doctor a broad view of what you have gone through. The more they have to work with, the better they can tailor a treatment plan specifically for you.
They are doctors, and although there to assist, often, one may feel that feeling of rush or be at a loss to know what to actually ask. Asking the right questions is key to understanding your diagnosis and next steps in treatment options. If you don't understand something, do not be afraid to ask for clarification, and if you have more questions, ask them. Here are examples of some questions you may want to ask:
It is okay to ask for things in writing during the appointment if you think you might need it, or you can take your own notes. Remember that while your doctor is supposed to be there for your best benefit, communication goes both ways. The more you ask, the better prepared you are likely to be.
It is in the knowledge of rights as a patient when relating to chronic illness that becomes important. Know your rights on access to care, appropriate treatment, and even insurance coverage. You have the right to ask questions, seek a second opinion, and understand the risks and benefits of any proposed treatment plan. Understand what you can refuse. Do not feel like because you are in a hospital, you HAVE to do what they ask you to do. Example: They wanted to overcharge me to give me my daily medications that I carry in my purse. I refused.
To this end, know what your insurance covers and what it does not, as relating to treatments, medications, and procedures. Knowing these well in advance will help to minimize a number of surprises and also enable you to be better informed in making a decision in care. If you are not certain, seek assistance from the billing department with your provider or call your insurance company directly.
If it does not feel right—your diagnosis or your treatment plan, or if you are not getting the answers you need—do not be afraid to get a second opinion. Sometimes just getting another perspective from another provider may confirm a diagnosis, give options of alternative treatments, or simply give peace of mind.
It is not about distrust; a second opinion is a wise way of ensuring certain considerations for oneself. In fact, most physicians encourage patients to have a second opinion, especially in instances where such a major decision needs to be made, like surgery or medications for long-term treatment.
This does not have to be a solitary sport. Having a support system come along, be it family, friend or caregiver can make you feel braver at appointments. Having someone with you can provide both emotional support but also be helpful by taking notes, asking questions or reminding you of things that might have slipped your mind to say.
Sometimes and perhaps because one feels overwhelmed, it is difficult to grasp all information imparted to us in a medical setting; that supportive person then can assure that you don't miss something important and will be in a position to advocate on your behalf when this is deemed necessary.
While self-advocacy is going to involve taking responsibility for one's health and making sure that it is taken care of. This will be informed by knowing your rights, advanced preparation for the appointments, asking the right questions, and bringing in support when needed. Living with chronic illnesses might get tough. Being your own advocate gives you the power to go through the healthcare system with assurance.
Your voice counts in your journey of care. By advocating for yourself, being informed, and working collaboratively with your medical team, you'll be able to create an appropriate treatment plan that fits you best—one that will meet your specific needs and help you make the most of your life. Don't be afraid to say no. No one cares about your health as much as you.
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