Mental Health
Canada’s Suicide Crisis Helpline:
9-8-8
Available by phone and text
Provided in English and French
Accessible 24 hours a day, 7 days a week
Living with Porphyria: The Mental Health Impact
Porphyria doesn’t just affect the body—it can deeply impact your mental and emotional well-being. The condition itself may cause symptoms like anxiety, depression, confusion, and even hallucinations. But beyond the illness, the experience of living with porphyria often brings its own psychological challenges.
Many people with porphyria have faced invalidation within the healthcare system—being told their symptoms are “all in their head,” having their concerns dismissed, or struggling to access appropriate care. These experiences can be traumatic and leave lasting emotional scars. Friends and family may also struggle to understand, sometimes minimizing or disbelieving your condition.
Porphyria can feel incredibly isolating. You may not know anyone else living with it, and managing symptoms—especially avoiding sun exposure—can make it hard to maintain social connections or everyday routines.
Taking Care of Your
Mental Health
Looking after your mental health is just as important as managing your physical symptoms. Alongside general wellness habits like eating nutritious foods, getting regular exercise, and maintaining good sleep hygiene, you might also find the following strategies helpful:
Talk to your doctor about any symptoms of anxiety or depression—they can help you explore treatment options or refer you to a specialist.
Seek support from a mental health professional, such as a counsellor or psychologist, who understands the challenges of living with a chronic illness.
Connect with others who understand—read personal stories, join online support groups, or attend patient events to reduce feelings of isolation and share experiences.
Incorporate calming practices into your daily routine, such as meditation, mindfulness, or breathing exercises, to help manage stress and emotional ups and downs
