Acromegaly affects not only your physical body, but it may also impact your self-image and emotional well-being. It's useful to acknowledge the impact that acromegaly has on your life.
This page highlights the emotional impact of living with a chronic disease, and suggests how you can adapt to living with acromegaly. Topics covered include:
Common Patient Challenges
Developed with input from patient advocates from around the world, this 1 page infographic captures key aspects of what is like to spend a day in the shoes of a patient with acromegaly, with at-a-glance facts and figures about the most common challenges patients face and tips on how to address them.View / Download
Worth 1,000 Words: A Day in My Shoes - Life with Acromegaly
Word cloud-style infographic highlighting global commonalities of the acromegaly experience and the impact of inadequately controlled disease, developed in collaboration with patient advocacy groups from around the world.View / Download
Responding to the Diagnosis of Acromegaly
A diagnosis of acromegaly is a serious event. However, for many people, it may actually come as a relief; having lived for a long time with the symptoms, you finally have an explanation for what's been causing them.
In general, people who have been diagnosed with a chronic illness respond in one of three ways: resignation, denial, or adaptation.
- Resignation. Resigning yourself to having an illness is part of the process of coming to terms with your diagnosis and admitting that you have to adapt your life. Resignation isn't the same as acceptance, as it can be somewhat dispiriting, especially in the beginning, but it is a start toward dealing with the situation and finding a sense of emotional well-being. It's normal to feel a certain amount of helplessness when we're confronted by difficult facts. But by acknowledging these feelings, and understanding that they're natural, you can begin to move from resignation toward true acceptance.
- Denial. Some people react to illness by refusing to acknowledge that anything is wrong. Denial is usually based on fear or anger, and these are emotions that can be especially difficult or feel inappropriate to express. To overcome the emotions behind denial, many people find that connecting with others who have acromegaly, or another chronic illness, can be of immense value. It's important to understand that these feelings are natural. By expressing them in a supportive environment, you gain energy, humor, and a sense of peace. Even if you don't have access to a support group, simply recognizing that it is normal to have unpleasant feelings can help make you feel better.
- Adaptation. As you are able to recognize and deal with your disease and the impact it has on your life, you can move toward a healthier emotional state. Instead of "surrendering" to your disease, you can take an active role in managing it. Adaptation is a process, but the reward is a sense of living more fully, and the possibility that, by taking charge of your emotional life, you may have more energy to do the things that may help improve your symptoms and prognosis.
Psychological Aspects of Living With a Pituitary Disorder
Catherine Jonas MA, LMFT, CMC
Psychological Consultant, Cedars-Sanai Medical Center Pituitary Center
This short video provides valuable insights into the impact of pituitary disease on a patients psychosocial health and well-being, discusses the challenges of accepting the diagnosis, reviews coping startegies for patients, and offers practical suggestions to help HCPs manage this important aspect of care.
Dealing With Setbacks as You Live With Acromegaly Disease
In your journey toward adaptation, there will be good days in which you live in the moment, confident that living with acromegaly has made you a better person. Inevitably, there will be setbacks as well. Some setbacks are physical; others are emotional. What's important is how you deal with them when they happen.
A productive use of emotional setbacks is to reflect on any unresolved feelings or painful memories with a positive mindset — you have been through a lot, you will get through this. Take these opportunities to express your inner thoughts to your doctors or loved ones. Or, you may find keeping a journal is more your style. Eventually, as you adapt to life with acromegaly, you will learn to anticipate triggers for feelings of discouragement, such as anniversaries, holidays, or medical appointments.
Another way to keep positive is to set small, realistic goals for yourself. Be honest and stay in tune with your own body. Focus on developing the parts of your identity that have nothing to do with your illness — your imagination, your dreams, your creativity. Yes, you may have to adjust your path or ask for help along the way, but remember: Allowing others into your life to help is not a sign of failure.
As a person living with acromegaly, your experience gives you a unique ability to give back to others. To people newly diagnosed with acromegaly or another chronic illness, you can offer understanding. To those who are perfectly healthy but fear that they may one day have a chronic condition (as almost everyone will eventually) you can be an example. To those who love and care for you, your ability to adapt to illness offers inspiration.
Consider your perspective on life. There's no "right" philosophy; you are the only one who knows what this experience means to you. Whether you believe you have learned something about yourself or not, you can use these experiences to help people understand what chronic illness might be like for them.
You might consider volunteer work as a way to connect with other people living with acromegaly. Along the way, these connections may help you to realize your own strengths.
Learn more about taking an active role in managing acromegaly disease