Beyond the Diagnosis: Caring for Your Mental Health During and After DRESS Syndrome

DRESS Syndrome is an uncommon but life-threatening delayed drug reaction. DRESS stands for Drug Reaction with Eosinophilia and Systemic Symptoms and also goes by Drug-Induced Hypersensitivity Syndrome (DIHS). DRESS can occur weeks after starting a new medication, which can make it especially difficult to diagnose. Common triggers include antibiotics, anticonvulsants, and the antigout medication allopurinol.

Having DRESS can deeply affect every part of a person’s life: physically, emotionally, and psychologically. The reaction often causes fever, rash, blood abnormalities, and internal organ involvement. And, some people may face long-term complications, like autoimmune conditions.

While the rash may fade and lab results improve, the emotional impact can linger. Many patients find themselves feeling anxious, uncertain, or even grieving their sense-of-self and loss of safety they once had. These feelings can especially happen when taking new medications or learning to trust their body again.

If you’re feeling this way, you’re not alone. What you’re going through is real — and there is space here for your experience and healing.

DRESS Syndrome's emotional aftermath is common

In our Register Your Case survey, DRESS patients shared the emotional toll of their experience. Out of

740 respondents:

• 81.4% reported fear or anxiety around taking medications

• 65% experienced anxiety

• 49% reported symptoms of depression

• 37% shared fear of hospitals or medical providers

• 34% were living with PTSD

Scientific research also reflects these emotional experiences. In the study, “Drug Reaction with Eosinophilia and Systemic Symptoms: Medication Adherence and Quality of Life in Survivors,” patients described effects like:

• Feeling fear and hesitation around taking medications

• Having anxiety and distress directly related to their DRESS experience

• Giving up recreational activities due to the effects of DRESS

These findings affirm something many survivors already know: the emotional wounds from DRESS can last long after the physical ones begin to heal.

The Invisible Wounds of DRESS

Many people experiencing DRESS also describe feeling deeply isolated and misunderstood — in part because DRESS is an uncommon condition. Most people haven’t heard of this condition, including many in the medical community. This lack of awareness can make it even harder to find support, feel believed, or get timely and accurate care.

Confusing symptoms

For many, the struggle begins well before diagnosis. DRESS often presents with a confusing mix of symptoms, leading to numerous diagnostic tests. Sometimes this leads to misdiagnoses and delayed treatment. This drawn-out uncertainty can take a deep emotional toll.

Unclear recovery and treatment paths

Even after diagnosis, the path forward is rarely straightforward. Recovery timelines may be unclear and treatments can feel uncertain. And patients often carry the burden of becoming the “expert" in their own condition. Frequently, end up navigating diagnosis and follow-up care with doctors who may not be familiar with DRESS or its long-term effects.

Affected personal life

The impact of DRESS reaches beyond just the individual. It can affect family and work life, relationships, and personal identity. When emotional and physical symptoms overlap, it can be hard to trust your body again. It’s natural to worry about what the future holds. Since DRESS occurs partially because of a genetic predisposition to certain medications, many patients also wonder if their family members could also be at risk.

All of this environment reinforces the need for ongoing emotional support. Patients need to be met with compassion — not dismissal — at every stage. They need their voices heard and feelings validated. And this support can last long after their initial reaction.

Supporting Your Mental Health

If you have DRESS Syndrome and seek ways to cope with your mental health, here are some tips that may help:

Practice self-compassion

Be gentle with yourself. Healing from DRESS does not happen in a straight line, and you may have setbacks. Show yourself the same kindness and understanding you’d offer a loved one going through something hard.

It’s okay to feel scared, anxious, or overwhelmed. Your emotions are a natural response to what you’ve been through. Give yourself permission to feel and heal at your own pace.

Educate yourself

Understanding DRESS can help you feel more grounded. Learning about your condition, triggers, and potential risks can reduce fear and help you feel more empowered in conversations with your doctors.

Seek trauma-informed therapy

If you’re experiencing PTSD, panic attacks, persistent fear, or depression, consider working with a therapist who specializes in trauma surrounding illness. They can help you process what happened and move toward healing in a safe, supportive way.

Here are some helpful therapy resources:

• Psychology Today Therapist Finder – Search by location using terms like "trauma," "medical trauma," or "chronic illness"

• International Society for Traumatic Stress Studies (ISTSS) – Find clinicians trained in PTSD and complex trauma

• Open Path Collective – Affordable therapy for uninsured or underinsured individuals

• NAMI – The National Alliance on Mental Illness offers peer support and education

Build a support network

Surround yourself with people who care — whether that’s friends, family, or fellow survivors. Let them

know what you’re going through and how they can support you, even if it’s just by listening.

Joining a patient support group can also be a powerful reminder that you’re not alone in this. At the DRESS Syndrome Foundation, we host ongoing virtual patient gatherings called DRESS Support Meetups. We invite patients in any recovery stage, loved ones, and caregivers to attend.

Nurture yourself

Prioritize what helps you feel supported emotionally and physically: consistent sleep, nourishing meals, light movement, and moments of calm.

Try following these tips:

• Honor your pace: Recovery takes time. Setting small, achievable goals can make life seem more manageable: a short walk, journaling, consistent sleep, nourishing meals.

  
  

• Explore gentle mind-body practices: Meditation, breathwork, or yoga can help soothe your nervous system. Even five minutes a day can help you feel more grounded.

  
  

• Use calming meditation apps and music: Sometimes the smallest comforts help the most. You might try:

  • Meditation apps: Insight Timer, Calm, Headspace

  • Soothing music: Spotify playlists like Healing Frequencies, Peaceful Piano; Weightless by Marconi Union

  • Comforting podcasts: Nothing Much Happens, The Daily Meditation, Ten Percent Happier with Dan Harris

  
  

Create a medical advocate plan

Appointments can feel overwhelming — consider bringing a trusted person with you. They can take notes, ask questions, and help make sure your medical team hears your concerns and emotional needs.

Don’t hesitate to ask your medical team about emotional support services. Many hospitals and clinics offer resources like counseling, social work, or patient navigators. These individuals can help you feel more supported throughout your recovery.

Your voice matters! Speak openly and honestly with your care team.

You deserve support – now and always!

Living through DRESS Syndrome takes immense strength. There may be moments of fear, grief, or

frustration. But you can also gain connection, growth, and hope.

Remember: You’re not alone. Others are walking this path, too. Together, we can build a community of shared strength.

Additional resources:

• Learn more about DRESS Syndrome

• Read real DRESS patient stories

• Join a DRESS Support Meetup for patients, loved ones, and caregivers

• Download our booklet Know the Facts About DRESS Syndrome [3.8 MB]