Table 4.
Lessons in patient empowerment
| Themes | Patient quotes |
|---|---|
| • Acromegaly is a disease or condition in which you are the best judge of what is going on in your body | • “I know my body better than anyone else and I know when it is bad and when it is good … I know so many people with acromegaly that listen to their doctors like they are gods and many of them have no pituitary function but still have acromegaly” |
| • You can recognize the signs and symptoms before anyone else can, including if your current treatment is not working for whatever reason | |
| • You need to find doctors – endocrinologists, PCPs, neurosurgeons – and all the specialists you might need to help manage your different symptoms/comorbidities – who will partner with you and treat you as a person first and a patient second | • “I have been through a lot physically and emotionally. Acromegaly has taken over and changed my life completely. It has altered my path … thank goodness I found the Acromegaly Community over the Internet. They have been the only true support I get. They are the only ones that understand what I am going through. The fact that I can discuss the strange symptoms and compare notes with others makes a big difference. If you talk about all of this to a friend or family member, it’s not the same. The doctor doesn’t get it either” |
| • You need to find HCPs who know more than you (if at all possible) – or at least are willing to learn and share their learning and to accept you sharing your learning and intimate knowledge of your body | |
| • You need to be an advocate for yourself to be proactive in your own care | • “I own the car and I’m driving it … the first doctor I saw was more flash and glam … so I got a new endo … she’s only had 3 acro patients … the first endo had so many, but was too busy for me … I am very convincing … I just feel it’s my body…” |
| • You need to recognize your own need for help and support– you cannot do this alone | • “Since becoming ill, I’ve lost my career, my home, my savings, my husband, my self-worth, and most of all my love for life. I live every day in constant pain and suffer from pounding migraines, back pain, arthritis, nerve pain from fibromyalgia and am never pain-free … for a long time, I was really, really mad about having acromegaly, but now have realized it’s my purpose. It has made me a stronger, wiser, and kinder person … I am one of the faces and voices for acromegaly and have always offered kindness, love, knowledge, experience and support to anyone who is in need … remember, be kinder than necessary, because everyone is fighting some kind of battle” |
| • You need to learn to accept what has happened, which makes this as much an emotional, psychological, and spiritual journey as a physical journey |
Abbreviations: HCPs, health care providers; PCPs, primary care physicians; endo, endocrinologist; acro, acromegaly.