For many patients with Genetic Sucrase-Isomaltase Deficiency (GSID), the road to diagnosis was a long and hard one. It may have taken months or years to get a correct diagnosis. During that time, some GSID patients felt that the healthcare providers did not believe them or questioned their symptoms or the severity of their symptoms. Some patients may have even felt somewhat distrustful of the medical community because of a delayed diagnosis.
Nevertheless, once patients receive the GSID diagnosis, they need to develop a positive, working relationship with their healthcare providers to achieve the best outcomes. The best relationships between patients and healthcare providers, such as physicians, nurses and registered dietitians, are built on mutual trust, respect, and openness. Here are some tips to communicate effectively with your healthcare provider.
1. Trust Your Instincts and Judgment
You are the expert on your body and symptoms. You can also become an expert on GSID. Realize that your insights and observations are very important to discuss with your team of healthcare providers. Do not be intimidated by the medical knowledge of your healthcare providers. Instead, ask many questions to ensure you are highly informed. As a patient, you know when something is working for you and when it isn’t. Your input is invaluable, but also keep in mind that you can benefit from the input and suggestions of your healthcare professionals.
2. Seek out Information
Because GSID is an often overlooked disorder, there is little information available to the general public or even to medical professionals. It is vital that you seek all the information you can to make the best medical decisions for yourself. Sources of information include medical journals, online searches, and patient support groups in addition to medical specialist consultations. Check any information you read with your physician to confirm its credibility. Learn the terminology of GSID so that you can discuss the diagnosis effectively with your healthcare providers.
3. Maintain a GSID Medical File
Many GSID patients find it useful to use a three-ring binder to collect and manage medical information. Sections might include primary care and medical specialists’ receipts and contact information, diet information, food composition tables, food logs or diaries, medication information, and medical articles. Ask for and keep records of any procedures, labs, tests, and pathology reports. Ask for and keep any physicians’ reports or clinical notes. Also make your own notes on diet or medication issues as well as any questions you would like to discuss at your next appointment. Find an organizational system that works for you.
4. Ask Your Healthcare Provider for a Written Care Plan
Sometimes it is difficult to concentrate and retain the oral instructions provided in a medical setting. To ensure that you understand the healthcare professionals’ instructions, take notes and ask for a written care plan. Also, always plan ahead for your medical appointments and come prepared with written questions or concerns you want your healthcare providers to address.
5. Change Healthcare Providers if Necessary
Sometimes a healthcare provider’s communication style and your communication style do not work well together. In that case, you may need to search for a new physician or registered dietitian who better fits your style and needs. In the best interest of your care, do not hesitate to look for the best healthcare professionals to meet your needs. You may need to “shop around” for a team of healthcare providers who are willing to work with you collaboratively. To ensure the best outcomes, you need to feel comfortable with this team of healthcare providers.