Retinitis Pigmentosa and Mental Health: What Helps

Retinitis pigmentosa (RP) does not “only” affect the eyes, but all areas of life – from work and mobility to relationships. Studies describe a high psychosocial impact, partly because RP usually begins early, progresses slowly, and is incurable. Therefore, psychosocial coping strategies, education, and the maintenance of independence are part of care from the very beginning.¹

In a survey, 92% of those affected stated that RP influences their mental health.¹

At the beginning, shock, anxiety, and uncertainty often dominate. Later, the narrowing of the visual field can noticeably restrict daily life: things like reading, finding one’s way, sports, or driving become more strenuous – in studies, this correlates with lower quality of life, more anxiety, and depressive moods.¹

Independent of RP, studies on visual impairment also show: less visual function is often associated with more symptoms of depression and feelings of anxiety.²

Important: Feelings are understandable – and can be influenced. Write down your biggest hurdles (e.g., glare, twilight, orientation). This is exactly where help comes in: technology, training, environment.¹

With significant vision loss, visual hallucinations can occur (Charles Bonnet Syndrome) – up to 1 in 3 adults with advanced RP report this. This has nothing to do with “being crazy,” but rather with sensory deprivation. Speak openly about it during your consultation – shame unnecessarily prevents people from seeking help.¹

Education & Counseling. Medical teams should actively address psychological aspects, explain supportive offers, and – if necessary – refer patients to primary care physicians or counseling. Regular check-ups (usually every 1–2 years) make the progression predictable and provide security.¹

Peer Support. Contact with self-help groups improves coping, function, and autonomy – and relieves the burden on those around you.¹

Rehab & Low Vision. Magnification, edge filters, lighting, orientation & mobility, screen readers – intended as structured rehab, not “random finds.” This increases the scope for action and reduces stress.¹

Involving the Family. Relatives learn to recognize warning signs of depression and react constructively.¹

Many burdens arise when visual function is lost. Therefore, preservation of vision is a central goal: studies on transcorneal electrical stimulation (TES) suggest that visual field loss in RP can be slowed down.³

The team concludes: if the annual loss is halved, the “half-life” of the usable visual field mathematically doubles – including the potential to permanently improve quality of life.³

Important: TES does not cure RP. Whether TES is suitable for you is determined by an eligibility assessment (goals, dose, follow-up checks). Details on our TES page.

1. Establish routines (fixed check-up & training times). Repeatability reduces stress¹
2. Optimize light & contrast (at home/work)¹
3. Test edge filters/magnification/screen readers – have them professionally adjusted¹
4. Train orientation & mobility (white cane, route training)
5. Energy management: schedule appointments, take breaks seriously¹
6. Communicate openly (team, family): “What exactly do I need?”
7. Use peer support: exchange relieves the burden and provides everyday tips¹
8. Exercise (adapted): has a mood-stabilizing effect – and strengthens self-efficacy¹
9. Include digital helpers (apps, voice output, navigation) in your standard kit¹
10. Check therapy options with the team (e.g., TES) – preservation of function also supports the psyche³

Seek medical/psychological support if

Your ophthalmologist should actively consider psychological aspects and refer you if necessary.¹