Navigating the Waters to Find the "New Normal"

A VMS Clinical Nurse Educator with lupus and ankylosing spondylitis shares insights for clinicians helping people with a chronic illness

By Jennifer Jacobson, RN, BSN

It’s a huge number to fathom – 133 million. That is the number of people in the United States living with a chronic illness – 40% of the U.S. population. I’m Jen, and I’m one of them.

A chronic illness may be anything that is incurable and ongoing throughout a person’s lifetime. It can be a rare condition, painful or not, autoimmune in nature, genetic or entirely unknown. Sometimes people will never have the satisfaction of a true diagnosis, but their symptoms alone will qualify them. Me? I have lupus and ankylosing spondylitis.

Being a nurse made me a very reluctant patient during the several years it took to get my diagnoses. I didn’t want to be on the patient side of the bed! I wanted an instant fix and to go back to the life I’d known. But what my fellow 133 million patients will tell you is that simply isn’t our reality. We must find new coping skills and a “new normal.” Having a nurse educator who understands both could have helped me gain my footing and equilibrium so much faster. I’m proud now to be one of those Clinical Nurse Educators. Here are a few methods that clinicians may find helpful in assisting a patient find the new normal.

  1. Acceptance. Every interaction I’d ever had with a doctor before I became chronically ill was an easy one. Once, I had a broken ankle. The doctor applied a cast, and with time it healed. Accepting a chronic illness is much different. Helping people recognize the difference between a marathon and a sprint is essential to building understanding and acceptance. Provide disease education in small, bite-sized pieces is key.
  2. Empathy and affirmation. My own thoughts and perceptions were a powerful influence on my illness. I spent countless hours wondering “What if?” and “Why me?” These are inevitable questions (especially during the grieving phase). It’s important to acknowledge these are normal and to provide empathy and affirmation; however, questions such as these have no easy answers. I found they did not bring peace or emotional healing.
  3. Self-awareness. Instead, what we can do is help patients answer questions such as “What now?”, “Where do we go from here?”, “What do you think you’ll do next?” and “What do you need right now?” Using your motivational interviewing skills will deepen the person’s self-awareness and speed the emotional healing they need so much, even if that’s rarely discussed. It’s a powerful nursing tool, so don’t be afraid to use it!
  4. Action. Lastly, I needed a plan of action in caring for my chronic illness – something to do to push back against the helplessness I felt. This is called a plan of care. The combinations and possibilities are endless and are entirely based on individual patients and their needs. Here were some important action items I needed:
    • Self-care. Stretching, meditation, practicing gratitude, a ten-minute walk – anything that would give me an endorphin boost and provide a sense of control over my body was important. I had gone into a kind of survival mode that left me forgetting to thrive and continue to do the things I loved in a modified way. Our patients need to be reminded that it’s ok to continue living their lives.
    • Symptom relief. It dawned on me somewhere along the revolving door of doctors that it was ok to ask for symptom relief even before I had a firm diagnosis. I was holding my breath and waiting for the exact diagnosis, but in the meantime, I was really suffering. Being a compliant patient doesn’t require that. Once I asked that some of my symptoms be addressed, the relief was like a hundred pounds lifted off my shoulders.
    • A system. Suddenly there were so many specialists, tests, insurance forms and appointments, even without a little brain fog it would make my head spin! I developed a 3-ring binder with tabs for each of these. I brought it to every appointment. I took notes. I made sure each specialist understood the care plan of the other. I started asking more questions when duplicate tests or labs were ordered. I conducted appointments like a business meeting – I own and operate this body, but my doctors were the board of directors. Finally, I instituted one final technique.
  5. Collaboration. During my care for lupus and ankylosing spondylitis, I never left an appointment without asking one summary question and entering the answer into a journal. “Doctor, what are the next steps and why did you choose them?” Or “Did we make a major change in our plan of care from the last visit?” Or “Did you learn anything new that helps you understand my condition and how to treat it?” It created collaboration, dialogue and ensured that each visit was meaningful.

I hope some of these techniques resonate with you and bring to mind a person you might be able to assist. The work we do as Clinical Nurse Educators is so important in bettering the lives of those who have joined the “chronically ill club,” a club no one wants to join. Thank you for the work you do and for helping us navigate these difficult waters to the shores of the new normal.

Jennifer Jacobson is a Clinical Nurse Educator for VMS BioMarketing. She joined the team in 2018 and provides education for people with ALS.