“Modern Family” star Sarah Hyland battles kidney dysplasia, a kidney abnormality develop in the womb. Despite receiving a kidney transplant from her father in 2012, Hyland has struggled to manage her condition and getting her doctors to listen.
Recently, Hyland took to Twitter to ask the chronic community if they have experienced similar issues.
“For those who are chronically ill and in chronic pain: Have you had the experience of doctors not listening to you? If so, how do you not tear their heads off with your bare hands,” questioned Hyland.
Like Hyland, many patients battling chronic diseases have expressed similar frustrations. Here are three tips to help make sure your voice is heard.
1. Research your condition(s).
Before visiting your doctor, it is helpful to conduct some research about your disease, common symptoms and possible treatment options. While doctors are medical professionals, they aren’t experiencing the pain, the fatigue or the host of other symptoms you may deal with on a daily basis. With a bit of background research, you are able to more effectively articulate changes in your condition, which can encourage your doctor to take another look.
2. Connect with other patients who battle your condition.
Often, those most knowledgeable about a particular condition are patients who have been battling the disease themselves. Fellow patients are able to provide you with invaluable firsthand experience and can often answer specific questions. For instance, they may know the best way to recover after dialysis treatment, foods to avoid if you have lupus or how to explain changes to your condition. Their insight is helpful in determining if certain experiences are common with your condition and help you consider when to consult your doctor.
To connect with other patients, look for support groups in your community. You can usually find information about support groups online or posted in the hospital or clinic where you receive treatment.
3. Speak up.
It is important for patients to realize they are their own best advocates. If you don’t continue to bring up a persisting or recurring issue, it may not be properly addressed. You have to battle your condition every day, and so take charge, speak up and your doctor will have to hear you.
Battling a chronic disease is a 24/7 job, and it can be extremely frustrating when your voice isn’t being heard by family, friends or health care providers. The Chronic Disease Coalition is here to support patients and provide a platform for patients’ voices. Join us, and let your voice be heard.