Taking responsibility for your own care helps ensure that you not only meet your most immediate health needs, but also improve the quality of your life.
I have had the good fortune of maintaining far better health than is typical for someone with my circumstances. There are many factors that contribute to this, but one of the most important is that I choose to advocate for myself when it comes to decisions that affect my quality of life and healthcare.
When I was first injured, the rehab team that prepared me to leave the hospital stressed the importance of self-advocacy and directing my own care. Those who know me will undoubtedly recognize that I did not struggle in asserting myself in this way. Taking responsibility for your own care helps ensure that you not only meet your most immediate health needs, but also improve the quality of your life.
When you are unable to do things for yourself and, therefore, are relying on others to help you perform daily tasks, it is important to communicate both your needs and preferences. It may sometimes be difficult to make these requests and share personal idiosyncrasies. But, you must remember that as long as you are polite and respectful in how you communicate, the people taking care of you need and want to know your needs and wants in order to provide the best care.
One of the most important areas for self-advocacy is finding the right medical providers and curating a supportive healthcare team. The doctors and other healthcare professionals involved in your care have a huge impact on the trajectory of your health prognosis. It is important to select healthcare providers that you can get along with, in terms of personality and style of approach for meeting healthcare goals. I have selected healthcare providers that respect me and my wishes for my care, while also being up to date on the most current research. For example, I was recently referred to a specialist because she is known for being well-researched in her field of practice, and I decided to work with her. I prefer providers who are not afraid to engage me in dialogue regarding changes to my treatment plan if they may improve my quality of life and long-term outcomes.
Fighting to live in a comfortable and fulfilling environment is just as important. Whether you are living at home or in a facility, it is important to make sure that your environment is appropriately tailored to fit your needs. It can seem like your choices are limited, but this is where the importance of self-advocacy comes in. It is okay to seek out and fight for a situation that accommodates your needs. You just need to be willing to put in the time and effort. This same philosophy applies to equipment. Just because something is not readily available on the market does not mean you have to go without it. Once again, you are only limited by the strength of your own perseverance in advocating for what you need.
The last, and most difficult, realm of self-advocacy involves the battle against insurance providers and policy to ensure that you have access to the most appropriate and necessary equipment and care. I have spent many hours on the phone with medical supply companies, Medicare, and insurance companies. I have also written strongly-worded letters to facilities that have not been accessible or accommodating. Most recently, I submitted a letter to the Centers for Medicare & Medicaid Services (CMS) recommending that they end the practice of competitive bidding for durable medical equipment, as it may interfere with an individual gaining access to the best equipment to suit their needs.
Even when life leaves you in less than desirable circumstances, you have the power to shape what that life looks like as long as you are willing to fight for yourself.
The views expressed by Loa are not necessarily the view of the Ventec Life Systems, its members or the clinical board. These blog posts are the personal experiences of Loa. The blog posts are not intended to provide clinical advice or training related to VOCSN. Always consult a physician or trained clinician prior to using VOCSN. Please refer to the VOCSN Clinical and Technical Manual for detailed instructions, including indications and contraindications for use. VOCSN is available by prescription only.