For many CSID patients, the road to diagnosis was a long and hard one. It may have taken months or years to get a correct diagnosis. Some CSID patients may feel that the healthcare providers did not believe them or questioned their symptoms or the severity of their symptoms. Patients and caregivers may feel somewhat distrustful of the medical community because of a delayed diagnosis. Nevertheless, once a patient receives the CSID diagnosis, he/she (and the caregiver) will need to develop a positive working relationship with healthcare providers involved with their care. Healthcare providers and patients/caregivers must work in partnership with each other to achieve the best outcomes. The best relationships between patients, caregivers, and healthcare providers (such as physicians, nurses, and registered dietitians) are built upon mutual trust, respect, and openness. Here are some tips to communicate effectively with your healthcare provider.
You are the expert on your child or of your own body. You can also become an expert on CSID. 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 is not. As a parent/caregiver, you have intimate knowledge of your child’s history, routine, development, strengths, and needs that should always be shared with your healthcare providers. Remember that in time, you will become the CSID expert in your or your child’s care. Your input will be invaluable, but also keep in mind that you can still benefit from the input and suggestions of your healthcare professionals.
Because CSID is a rare 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 or your child. Sources of information could include medical journals, online searches, patient support groups, etc. in addition to medical specialist consultations. Check any information you read with your physician to confirm its credibility. Learn the terminology of CSID so that you can discuss the diagnosis effectively with your healthcare providers.
Many CSID patients and caregivers find it useful to use a 3-ring binder to store medical information. Sections can include primary care and medical specialists’ receipts and contact information, diet information, food composition tables, food logs or diaries, medication information, school information, and medical or other helpful articles. Ask for and keep records of any procedures, labs, tests, and pathology reports. Ask for and keep any physician’s reports or clinic notes. Also make your own notes on diet or medication issues or any other questions you would like to discuss at your next appointment. Find an organizational system that works for you.
Sometimes it is difficult to concentrate on the oral instructions given in a medical setting. This can be especially challenging for caregivers if they are simultaneously trying to supervise their children. Many patients and caregivers feel somewhat uncomfortable in a healthcare setting. Try to limit distractions while attending a medical appointment by planning ahead of time. To ensure that you understand the healthcare professionals’ instructions, ask for a written care plan or report. Also, always plan ahead for your medical appointments and come prepared with written questions or concerns you want your healthcare providers to address.
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 (RD) that better fits your style and needs. In the best interest of you or your child’s care, there should be no hesitation 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 and/or your child collaboratively. You need to feel comfortable with this team of healthcare providers in order to ensure the best outcomes for yourself or your child.