The recent conference Society for Participatory Medicine (SPM) held on the journeys of Multiple Sclerosis [MS] patients, four panelists, Johanna Hising DiFabio, Meredith O’Brien, Jennifer Southard, and Danny van Leeuwen, offered observations on their patient journeys, from getting diagnoses to ongoing management of their condition [bios can be found below]. Their journeys hold useful lessons that can be helpful to anyone navigating life as a patient and offer a master class in what it means to be an e-Patient.

Diagnosis

MS can take years to diagnose, given its often confusing presentation. Some panelists were diagnosed quickly, while others were thought to have psychosomatic issues for several years, despite increasing symptoms.  Not knowing what was happening to their bodies and getting a diagnosis both caused trauma in different ways. They went from the anxiety of not knowing what was wrong to the fear of having to cope with a life-changing disease. One was advised not to research their condition. Another was encouraged to connect with fellow patients through the MS Society.

Takeaways/What Helped

• Listen to your body and symptoms. You know your body better than anyone else.
• Don’t waste time with clinicians who won’t listen, which should be a core part of their jobs. Find clinicians who listen. This may take multiple attempts.
• Being a passive patient won’t help sort out what is going on.
• Research your symptoms yourself, using reputable sources. This will prepare you to ask your clinician about possible causes.
• Once diagnosed, connect with patient and disease societies to understand how to manage your condition, as patients are the experts in living with a condition.

The Right Doctor

Once a diagnosis was made, panelists thought that all the clinicians they encountered wanted to help them, but some were simply not a match on an interpersonal level. The mismatch was sometimes on a personality basis or because of their management approach. After diagnosis, several panelists reported that they left their clinician in search of a better match, which they found to be worthwhile.

Takeaways/What Helped

• Think about what is important to you in clinical encounters, beyond clinical competence. If you value flexibility and how you feel about the impact of your treatment, having a clinician who manages your condition only “by the numbers” will be a source of dissatisfaction for you. Find a new doctor, if there is a poor “fit”.
• Find a clinician who sees you as a partner and treats you that way, a clinician you can trust. Actively define the respective roles you and the doctor will play in your first visit.
• Not being 100% honest with a clinician is another way of being passive. Being passive does not work to the patient’s advantage.
• Humble clinicians recognize the value of the patient experience and patient honesty, which will, in turn, improve your care.
• Bringing an agenda to your visit and sharing it in advance through a patient portal is helpful but training your clinician to share their agenda with you, as well, improves visit efficiency and effectiveness.
• None of the panelists wanted to act as their own doctor, but several felt it was critical to understand their condition, be aware of emerging research, and connect with other patients to be informed and share that knowledge with their clinicians.
• Others were more interested in letting the clinician manage their condition, provided that the clinician listened and acted on any concerns or preferences they had. Choose a clinician who will provide care, consistent with your desired approach.
• Some panelists who were satisfied with their relationships with their clinician saw them as the quarterback of their treatment team, but who must be on their wavelength and be aligned with their style. They also saw that they had a responsibility to understand their clinician’s behaviors and quirks to effectively collaborate.

Teamwork

With any complex condition like MS, active management is needed. This can involve the conventional medical care team, the complementary care team, and a personal support team. It’s easy to think of the medical team as the only team, but all are important parts of the successful care of a complex condition.

Takeaways/What Helped

• Patients must be the communication glue among their medical care team because they often don’t talk to one another. That’s a burden, but it does require the patient to be more engaged.
• If it helps to manage symptoms, engage complementary care professionals, like chiropractors, massage therapists, acupuncturists, yoga instructors, and dietary therapists. Keep your medical team in the loop. Some patients saw this team as aiding day-to-day comfort more than prescribed medications that have nasty side effects or don’t work perfectly.
• Family care partners and friends are important to the team to serve as added ears, sounding boards, and sources of emotional support. Be clear on the roles you want them to play and be aware that their goals for you may be different than your own (e.g., they may value your potential future mobility more than the burden of treatment you feel today). That’s to be expected.

Coping and Thriving

As one panelist said, “MS really sucks”. It is frustrating, debilitating, and causes the pain of loss of autonomy. It can dominate your life at every stage, but you can’t let it. Most of one’s life happens outside of the exam room. It’s the only life we have, and finding ways to live it well is paramount.

Takeaways/What Helped

• Some panelists recommended focusing not on loss but on what has been gained in managing their condition, achieving greater understanding of their lives, and finding meaning in it. They recommended being positive. Some did that by being involved in patient communities, advocating for MS research, and educating new MS patients.
• No one wanted to be known only for having MS, which is a diminishment of self and felt like unwanted pity. Simultaneously, panelists distained well-meaning comments like “but you look so good–I would never know you have MS”. That was difficult to hear when panelists were working profoundly hard not to stand out as having an illness and their effort was not understood. Having someone to vent to about the burden of MS, who would just listen, was helpful to some.
• Things healthy people do without a second thought or experience in life can be a huge challenge for the MS patient. Taking a vacation can involve complex logistics, like how to get from the entrance of the airport terminal and then onto the plane. Trying to have a baby may be complicated by necessary changes in medications that destabilize the disease and add months to getting pregnant. Menopause can disrupt successful treatment regimens. Stay positive and work with your teams to make your goals happen.
• One panelist negotiated a medication adjustment with her doctor to enable her to successfully wear high heels, which was very important to her. Her clinician was concerned about lowering her drug levels, but they worked together to find a solution because wearing heels was important to her sense of self. If a lifestyle choice is important to you, find a way to make it happen.
• No one had a simple answer about how to manage work relationships. All agreed that it was important to let superiors know about their condition, but how and when to do that were highly individual decisions.

At the core, the stories our patient panel told have valuable lessons for patients with a serious, long term, illness like MS. Be engaged advocates; choose doctors who can be full partners and have a clinical style that aligns with your personality; develop emotional and physical self-care strategies beyond the exam room; and let your wishes be heard, understood, and acted upon. It’s your body. It’s your life.

Conference Presenters

Johanna Hising DeFabio Diagnosed as a young woman, Johanna had to come to terms with MS, early. While it has meant a huge change in the life she expected to have, it has also enriched it, increasing her empathy, trust in her knowledge of her body, gratefulness, and awareness of the value of connecting with others. She is a mother, the Assistant Dean of the MIT Sloan School’s Executive MB and Sloan Fellows programs, and an active MS advocate.

Meredith O’Brien Boston area writer Meredith O’Brien is the author of six books including two on multiple sclerosis, her medical memoir (Uncomfortably Numb) and an anthology of MS patients’ stories (Uncomfortably Numb 2). She teaches writing and journalism at Northeastern University and Bay Path University. Meredith is also the New England trustee of the National MS Society.  Learn more about her work at: mereditheobrien.com.

Jennifer Southard Holds advanced degrees as both a lawyer and educator, she was diagnosed with MS around the time she moved from a career in law to a more satisfying one in higher education. She is a writer, professor, and designs curricula at Adelphi University. She manages her professional career, her family life with three children, and her MS with great energy and focus, living her life fully and living without limits.

Danny van Leeuwen Committed to health equity, learning, and sharing what works for best health, he serves people who help others using his privilege and experience as a person with disabilities, nurse, care partner, informaticist, and quality management leader. He podcasts, vlogs (https://linktr.ee/healthhats), and is an expert in measure and app development, pain management, and AI use in health decision-making. He plays baritone saxophone in Latin and Dixieland bands in his spare time.