The Good News
The Good News: Cushing’s Awareness
The good news is that April is Cushing’s Awareness month! Awareness means getting attention and sending a message. It means getting people to talk about the diagnosis including the symptoms and what the diagnosed experiences day to day. It could be the answer for someone still searching for a diagnosis. Cushing’s disease is still a lesser known illness and awareness is important for increasing the funding, research, and understanding that is desperately needed. With understanding, others may not be as quick to judge because of lack of knowledge. It can help those struggling to get more support from the people around them, as their symptoms and experiences are reinforced and validated.
Awareness campaigns have an impact on doctors too! They are a reminder to consider lesser studied illnesses when diagnosing. Many people who have fought for their diagnoses end up not trusting doctors because of conclusions for symptoms that blame the patients like: “you must be eating too many calories and not exercising enough” or “it’s all in your head”. People have also lost faith in some mental health professionals who have erroneously agreed with physicians that the symptoms are psychological in nature. Feeling invalidated, neglected, and judged by the professionals that are supposed to be helping us while having a chronic illness is difficult enough; it adds to disempowerment.
The good news is that there are ways you can empower yourself in the midst of living with a chronic illness. First, it’s important to self-advocate. The Wellness Recovery Action Plan (WRAP) identifies these ten steps to being an effective self-advocate:
Believe in yourself.
Know your rights.
Decide what you want.
Get the facts.
Express yourself clearly.
Assert yourself calmly.
Be firm and persistent.
An approach that encompasses these ideals can help you with being heard by physicians and mental health professionals (and loved ones). Doctor shopping is empowering. Think of your doctors as consultants. Find physicians willing to be part of a team of doctors within a variety of specialties to get you the best care possible.
Self-advocating doesn’t mean that you have to do it all on your own. A strong support network really does help. It may be difficult, but it is important to weed out people in your inner circle who are not supportive. The last thing you need is to spend more time trying to convince someone that your symptoms are real. How many times is it reasonable for someone to ask, “What is ____ (Cushing’s disease) again”? Allow yourself to accept the assistance of people who are supportive. Ask trusted individuals to attend doctor’s appointments with you. They may think of questions to ask that you did not. They may have an example of a time they witnessed one of your symptoms and help to continue to validate your experience. They can help you remember details of the conversation with the doctor that you may have forgotten because of the level of stress that was experienced during the appointment. You can even ask them to take notes so that you can concentrate. You may even want to ask them to drive for one less stressor.
For more information, please go to www.epictogether.org/