How to Get Support for Acromegaly

But there are many places you can find the support you need, including your healthcare provider, support groups, and loved ones.

The Toll of the Diagnostic Journey

Risa August, who was diagnosed with acromegaly in 2018 and currently lives in Golden, Colorado, experienced one of these delays firsthand. “For me, there was a realization that my body had been trying to communicate for a long time, and I hadn’t been fully heard,” she says.

“Being diagnosed with acromegaly, especially after a delay, can bring a mix of emotions: validation, anger, grief, denial, and even relief,” says August.

Navigating Changes in Appearance and Self-Esteem

Coming to terms with your body changes is deeply personal and not something you just “get over,” August says. “I would say, give yourself compassion. This isn’t about vanity, it’s about identity and sense of self.”

In her practice, Legere encourages her patients to move away from negative self-talk through mindfulness and self-compassion practices.

“What helped me was reconnecting with my body, not just for how it looks, but for what it has carried me through,” says August. “And it’s okay if acceptance doesn’t happen all at once. Sometimes it looks like neutrality before it looks like love.”

To embrace her body and all its changes, August books creative photo shoots every year. “I adorn it with fabulous fashion, self-hugs, and movement — I can’t think of a better way to honor this incredible body I still get to live in.”

“I also shifted my mindset from the sadness around who I would no longer be, and what I could no longer do to ‘What can I do now?’” says August, which gave her a sense of agency in a situation that initially felt out of her control.

Breaking the Cycle of Social Withdrawal and Depression

Whether you’re feeling down about your diagnosis or you have symptoms of depression, it’s vital to stay connected to a support system and receive the mental health care you need.

Why Mental Health Care Is a Vital Part of Treatment

Depression and anxiety can lead to a lower quality of life and raise the risk of other acromegaly complications.

“Mental health care should be considered essential, not optional,” says August. “With acromegaly, you’re not just dealing with physical symptoms, you’re navigating hormonal shifts, identity changes, uncertainty, and often a long diagnostic journey — that takes a real emotional toll.”

Legere usually suggests a psychological referral when one of her patients is dealing with anxiety, depression, social withdrawal, or difficulty coping with physical changes. “However, to be honest, even when there are no obvious negative reactions, a psychological intervention can be beneficial,” Legere says.

“Therapy, support groups, or even just having a safe space to talk openly can be just as important as medical treatment,” says August. “Addressing anxiety, depression, or isolation isn’t separate from care; it’s part of treating the whole person.”

Specific therapies like cognitive behavioral therapy (CBT) or acceptance and commitment therapy (ACT) can also help you reframe your relationship with your illness.

“With CBT, I work on identifying and gently challenging thoughts like ‘Everyone is staring at me’ or ‘I don’t belong,’ helping patients test whether those beliefs are fully accurate,” says Legere. “ACT takes a slightly different angle by helping patients accept difficult thoughts and feelings without letting them dictate behavior, while reconnecting with personal values like friendship, family, or independence,” she says.

The Role of Support Groups

“Finding community — even one person who is willing to listen, whether they understand fully or not — can be incredibly grounding,” says August. “Whether that’s through patient groups, online spaces, or advocacy communities, there’s something powerful about not having to explain yourself.”

You can find support in online forums, national organizations, and local hospital-based groups. If you’re looking for somewhere to start, check out these organizations:

• Acromegaly Community
• Pituitary Network Association
• Barrow Neurological Institute

How to Talk to Loved Ones About Your Needs

“When it comes to conversations, it can help to be specific,” says August. Instead of trying to explain everything about acromegaly, August recommends sticking to statements like:

• “What I need most right now is …”
• “What this feels like for me is …”

Specific requests give people a way to show up without needing to fully understand the medical complexity, says August.

The Takeaway

• An acromegaly diagnosis and its symptoms can affect your mental health, and it’s important to find support.
• Support groups, mental health care, and family and friends can all help you navigate symptoms, emotions, and specific needs as they arise.
• If you need help finding support, you can ask your provider for a mental health referral or local or online support group suggestions.