Abso-freaking-lutely-NOT

As a caregiver for my loved one with schizophrenia, I’ve faced countless challenges—most of which stem not from the condition itself but from the interactions with healthcare professionals. I never imagined that trying to support someone I care about could make me feel like a pariah. Yet, that’s often how I feel when I step into a doctor’s office or a hospital, where my attempts to help are met with skepticism or outright dismissal.

I know that healthcare professionals are doing their best in a demanding system, but the reality is that many of us caregivers feel left out, ignored, or even viewed as obstacles. We need change—change that starts with healthcare professionals recognizing us as partners in care, not as problems to be managed. Here’s why this is so important and what healthcare professionals can do to make things better.

Why Do We Feel Like Pariahs?

Confidentiality and Privacy Concerns: I understand that healthcare providers have to follow privacy laws like HIPAA to protect my loved one’s privacy. But too often, these rules are used as a blanket reason to shut me out, leaving me in the dark about critical aspects of care. I’m not asking for every detail—I just want enough information to support my loved one effectively.

Lack of Respect for Our Perspective: As a caregiver, I’m with my loved one every day. I see things that healthcare professionals might not see in a brief appointment. But when I share these observations, I often feel dismissed, as if my insights aren’t valuable. It’s frustrating and demoralizing to feel like my lived experience counts for nothing in the eyes of those who are supposed to be helping.

Judgment When We’re Stressed or Emotional: Caregiving is incredibly stressful, and sometimes I can’t help but show my frustration or worry. But instead of understanding and compassion, I often feel judged for my emotions. It’s as if healthcare providers see my stress as a sign that I’m difficult or irrational, rather than recognizing it as a normal response to an incredibly tough situation.

Seeing Our Advocacy as Interference: I’m an advocate for my loved one because I care deeply about their well-being. When I ask questions or push back on a treatment plan, it’s not because I want to cause trouble—it’s because I want the best for my loved one. Yet, this advocacy is often seen as interference, as if my involvement is somehow a nuisance rather than a critical part of my loved one’s support system.

What Healthcare Professionals Can Do to Support Us

To all the healthcare professionals out there, I know you have a tough job. But so do we. We need your support, not your skepticism. Here’s how you can help us be better partners in care:

Improve Communication

• Share Information Within Legal Limits: I’m not asking for a complete breakdown of everything discussed in an appointment. Just give me enough information so I can understand the treatment plan and help implement it at home. When in doubt, ask my loved one if they’re comfortable with me knowing certain details. Most of the time, they want me involved.
• Listen to Our Concerns: When we speak up, it’s because we see things you might not. Don’t dismiss our insights or treat them as less important than your clinical observations. A little validation can go a long way in making us feel like valued members of the care team.

Recognize and Respect Our Role

• Acknowledge Our Experience: We’re not just passive bystanders—we’re active participants in our loved one’s care. Recognize that we have valuable insights and experiences that can contribute to a more comprehensive understanding of the patient’s needs.
• Involve Us in Care Plans: Invite us into the conversation when discussing care plans or treatment changes. Ask for our input and genuinely consider our suggestions. We’re on the same team, and we all want the best outcomes for our loved one.

Show Empathy and Understanding

• Understand Our Stress: We’re under a lot of pressure, and sometimes we might come across as emotional or even confrontational. Instead of seeing this as a negative, try to understand where it’s coming from. A little empathy can go a long way in building trust and cooperation.
• Offer Support: Encourage us to take care of our own well-being. Suggest resources like caregiver support groups or counseling services. When you acknowledge the challenges we face, it helps us feel seen and supported.

View Advocacy as a Positive Force

• See Us as Partners, Not Problems: Our advocacy is a sign of our commitment to our loved one’s well-being. Instead of seeing it as interference, view it as a positive force that can help ensure the best possible care. We’re not trying to undermine your expertise—we’re trying to complement it with our own experiences and observations.

Foster a Collaborative Environment

• Encourage Open Dialogue: Make it clear that our input is welcome and that our involvement is seen as an asset, not a hindrance. A collaborative approach can help prevent misunderstandings and ensure that everyone is working toward the same goals.
• Provide Clear Guidance: Offer clear explanations and actionable steps that we can take to support the care plan at home. When we know exactly what to do and why it’s important, we’re better equipped to help our loved one succeed.

Moving Forward: Can We Work Together?  PLEASE?

Caregiving for someone with schizophrenia is one of the most challenging things I’ve ever done, but it’s also one of the most important. I want to be a part of my loved one’s care team—not just on the sidelines, but as an active, valued member. I believe that with better communication, more empathy, and a genuine partnership approach, we can make a real difference in the lives of those we care about.

Healthcare professionals, we need your help to make this happen. Please see us not as obstacles but as allies who are committed to the same goal: providing the best possible care for our loved ones. Together, we can create a more supportive, effective, and compassionate system that truly meets the needs of those living with schizophrenia. Let’s work together to build a better future for everyone involved.

And, if you get a chance…read my book. Mental health professionals might gain some insight and perspective of the challenges we face by reading the enormous amount we have to do.  Schizophrenia and Other Related Disorders. Handbook For Caretakers is my attempt to help my brethren. xx