When Medical Treatment Hurts

Katie Willard Virant

Living with chronic illness requires continuous treatment. We are not strangers to doctor appointments, test procedures, medications, and surgeries. In fact, many of us would be dead or severely incapacitated without this care. But medical treatment is a double-edged sword: While it is life-saving, it also exacts a high cost. In this month’s post, I explore that cost and offer suggestions on how to manage it.

Medical care is fragmented.

Fragmented care is defined as “limited, noncontinuous, episodic, and disorganized care across multiple healthcare practitioners and settings (Joo, 2023)." Fragmented care is particularly prevalent in chronic illness treatment, and it’s linked to poor health outcomes (Joo, 2023).

Fragmented care largely occurs because our medical system is a system of specialties: cardiologists know about hearts, and dermatologists know about skin. If you’re having symptoms affecting your heart and skin, you will see two doctors who often won’t communicate with each other. It’s up to the patient to manage continuity of care, ensuring that each doctor knows what the other is doing. This amounts to a lot of labor–the time and energy spent meeting with different specialists (physical labor), the mental sharpness required to understand and communicate each doctor’s assessment and treatment plan (cognitive labor), and the emotional fortitude to stick with the multiple calls and appointments (emotional labor).

Medical care is difficult to access.

Access to medical care can be challenging. Will insurance cover treatment? What are the wait times to receive treatment? Are referrals needed? Again, multiple doctors are often involved, so these barriers to treatment occur several times over.

Even when we get the care we need, we commonly feel rushed in interactions with our healthcare providers. We often don’t feel like partners in our health care; we feel like consumers with a long line behind us. The message is that we should take what they give regarding treatment directives and move on, often with our questions unanswered.

It’s difficult to overstate the level of exhaustion and frustration patients feel as they procure treatment for themselves. Many patients describe securing their medical care as a part-time job. They cannot take a break; they must continue working to ensure they receive the next appointment, procedure, and medication refill.

Medical care can cause physical pain.

Nausea. Fatigue. Skin rash. Cancer. Allergic reaction. Many drug treatments come with life-changing side effects. I often consider patients’ relationships with these medications akin to a “disorganized attachment.” We need our medications to survive, and they cause us pain. We are grateful for them, and we resent them.

Surgical treatment, too, is painful. Our bodies are cut into–violated–in the name of cure. This violation's physical and emotional sequelae are profound and often ignored or downplayed. There’s a belief that “good patients” should be stoic about measures taken to heal them.

Managing the Stress of Medical Care

• Acknowledge the stress of medical treatment without shame. Yes, receiving treatment is beneficial. But it also creates a new set of difficulties. Acknowledging the difficulties does not mean you’re not grateful for treatment; it means that you can feel multiple feelings simultaneously.
• Find a space to vent about the difficulties associated with treatment. Is there a family member or friend who can validate that accessing continuous medical care is frustrating and exhausting? Hearing someone say, “I get it. It is hard,” is important.
• The healthcare system is overburdened, and your needs might fall through the cracks. Advocate for yourself when you need more information, access, and action. “The squeaky wheel gets the grease” may have to become your mantra.
• Seek help when you are overwhelmed. Perhaps a relative can pick up your prescriptions from the pharmacy; maybe a friend can accompany you to doctor visits.
• Recognize the labor that accessing care involves and treat it accordingly. Feel pride in yourself for your work in caring for your health–schedule time to accomplish these tasks instead of squeezing them in as an afterthought. Rest so that you have the energy to continue accessing the care you need.