Invisible symptoms: Why must patients suffer in silence?

Authored by: Nicky Barclay Prout & Matthew Newman, Directors

Every day, physicians encounter patients who have received diagnoses and treatments for healthcare disorders, yet these patients continue to suffer from symptoms that remain hidden in plain sight. Why have these symptoms become ‘invisible’, and how can we ensure that doctors ‘see’ them? In this article, we draw on insights from our Syndicated Patient Research series “Living With” to focus on Inflammatory Bowel Disease and Women’s Health. We explore these challenges, dispel misconceptions, and understand the benefits of acknowledging these hidden symptoms for everyone involved.

The hidden struggles of non-visible conditions

Personal and stigmatized symptoms: Patients with ulcerative colitis, endometriosis, and uterine fibroids share a common challenge: the deeply personal nature of their symptoms. Naturally, they might avoid discussing toilet habits or menstrual cycles openly, which prevents physicians from fully understanding the extent of their suffering. Our research shows that these patients often internalize their symptoms, normalizing experiences that would be unacceptable to others. For instance, individuals with ulcerative colitis may plan their outings based on the availability of toilets due to uncontrollable diarrhoea, viewing it as a part of daily life. Similarly, those with uterine fibroids and endometriosis might accept debilitating pain and extremely heavy periods as mere aspects of puberty.

Impact on daily life and mental health: These conditions bring unpredictable pain, the risk of bleeding through clothes, fecal ‘accidents’, and absences from work and social events. This burden harms not only physical health but also mental well-being. Reduced social interactions can lower self-esteem and confidence, leading to a vicious cycle of loneliness and isolation. Typically, patients reach a ‘breaking point’ in their quality of life before they seek help from a healthcare professional. Although diagnosis and treatment might follow quickly, the profound impact on patients’ lives persists.

Treatment satisfaction and patient-doctor communication: In our “Living With Ulcerative Colitis” research, we found that many patients continue to suffer from symptoms and flare-ups despite ongoing treatment. Instead of challenging their doctors for alternatives, they often “satisfice,” settling for treatments that merely satisfy rather than optimize. As a result, many patients endure suboptimal treatments and frequent steroid use without challenging their doctors’ assurances that this is the best course of action.

Likewise, our research reveals that patients with uterine fibroids and endometriosis grapple with symptoms despite prescribed therapies and frequent doctor visits. Doctors often prescribe opioids along with over-the-counter painkillers, raising concerns about potential addiction and poor treatment adherence due to ineffectiveness. Patients report that doctors seldom address their concerns about opioid use or, conversely, accuse them of seeking drugs when they request stronger pain relief, widening the communication gap.

Patients with these conditions hesitate to discuss emotional concerns and regret not sharing more about their symptom burden during consultations. They feel that their doctors do not fully understand the impact of their conditions and that they lack opportunities to discuss their management or potential new treatments.

Why understanding invisible conditions matters

Healthcare market research often relies heavily on doctors’ perceptions of patient experiences and the challenges of optimal treatment. However, our “Living With” series has shown that listening to the voices of patients with invisible conditions is essential to fully comprehend the emotional, social, and economic impacts of their conditions. Conversations with healthcare providers only reveal part of the story, as much of the burden remains hidden from their view.

Strategic opportunities for pharmaceutical companies

For pharmaceutical manufacturers, tapping into the perspective of these invisible patients offers numerous benefits. It helps identify leverage points and barriers in the patient journey, informs brand planning, and integrates unmet patient needs into clinical trial planning, Patient Support Programs (PSPs), and communication strategy development.

We have observed that patients with ulcerative colitis, uterine fibroids, and endometriosis often do not feel empowered to ask critical questions of their doctors, and doctors do not always provide the information or suggest treatment changes that patients may seek. Improving communication quality between patients and doctors is invaluable, ensuring optimal treatment, enhancing compliance, and increasing satisfaction, which ultimately may lead to increased and sustained product prescribing.

Amplifying patient voices

The ongoing challenges faced by individuals with non-visible conditions highlight the urgent need to amplify their voices within the medical community. Our “Living With” series underscores the fact that these patients need not endure their struggles in silence. By actively listening to their experiences and incorporating their insights into healthcare practices, pharmaceutical companies and healthcare providers can work together to build trust and empower patients. This enhanced communication fosters better understanding, improved treatment compliance, and optimal health outcomes. Ultimately, embracing the patient’s perspective will not only ensure that doctors choose the best treatments for their patients, but also ensure that treatments have a true benefit for those they aim to help, with the potential to bringing about transformative changes in patient care.

Find out more about Living With.