Mental Health Awareness: The Psychological Impact of Surviving SJS/TEN

Most people have never heard of Stevens–Johnson Syndrome (SJS) or Toxic Epidermal Necrolysis (TEN). These are rare but very serious skin reactions, usually caused by medications. They can cause painful rashes, skin peeling, and damage to the eyes, mouth, and other parts of the body. Many people with SJS/TEN end up in the hospital for weeks or even months.

But what happens after the hospital stay?

Surviving SJS/TEN is a huge victory—but for many, it’s just the beginning of another difficult journey. The emotional impact of this illness is often overlooked. People may seem physically better on the outside, but inside, they are still struggling.

In fact, research shows that over 50% of survivors experience depression, nearly half have anxiety, and many suffer from post-traumatic stress disorder (PTSD). These numbers are much higher than what we see in the general population.

Many survivors are left feeling afraid—afraid of getting sick again, afraid of taking new medications, and afraid of being misunderstood. For many individuals, even years later, seeing their scars brings back painful memories, and many avoid medications altogether out of fear.

A recent study also found that many survivors never receive clear answers about their illness. Nearly 90% had questions that were never addressed, and most said their doctors didn’t fully understand how SJS/TEN had changed their lives. Even fewer had access to a mental health provider who could help them process the trauma.

This needs to change.

This Mental Health Awareness Month, we want to shine a light on the mental health side of SJS/TEN. Recovery isn’t just about healing the skin. It’s about helping people feel safe, supported, and heard.

Survivors of SJS/TEN deserve more than survival. They deserve to live well—and that includes emotional healing, mental health care, and answers to their questions.

If you or someone you know has been through SJS/TEN, please know: you’re not alone. Your fears are valid. Your story matters. And support is out there.

References

1. Hoffman M, et al. Long-term physical and psychological outcomes of Stevens-Johnson syndrome/toxic epidermal necrolysis. JAMA Dermatology. 2021;157(6):712–715.

   
   

2. O’Reilly P, et al. The psychological impact of Stevens–Johnson syndrome and toxic epidermal necrolysis on patients’ lives: a Critically Appraised Topic. British Journal of Dermatology. 2020;183:452–461.

   
   

3. Coromilas AJ, et al. Physical and mental health impact of Stevens-Johnson syndrome/toxic epidermal necrolysis and post-hospital discharge care: Identifying practice gaps. JAAD International. 2023;11:88–89.

   
   

4. JEADV. Patients’, family members’ and healthcare practitioners’ experiences of Stevens–Johnson syndrome and toxic epidermal necrolysis: a qualitative descriptive study. Journal of the European Academy of Dermatology and Venereology. 2021;35:e232.