I’ve been faced with more than my share of ups and downs when it comes to health crises, but thankfully for me they’ve always been unfounded. After recently being misdiagnosed and going through the emotional turmoil of what a potentially life-threatening diagnosis could mean for myself and those closest to me, I wondered about other patients who might have gone through similar circumstances. I pondered how many patients like myself had been misinformed, misdiagnosed, or, even worse, had received legitimate life-changing news. I questioned how those individuals coped and what, if any, support had been given to them. What do you say to someone who has been given disturbing news, and how do you help them through a health crisis during a vulnerable time?
Many times, because we are unsure of what to say or do, we simply do nothing, which can be more disconcerting to those seeking or in need of emotional support. After speaking with friend Patricia W., a St. Louis native diagnosed and treated twice for breast cancer, I asked what support she had received and what she found to be the most helpful. I learned that having family support was vital in helping her to feel hopeful in addition to having someone with her during doctor visits to help decipher information given by the doctors and their staff. She compared this to feeling like she had a security blanket. Patricia shared that being able to visit and talk with other patients who were experiencing the same thing, and in various stages, was also comforting, as they understood what she was going through. She stated that loved ones may feel that they are being overbearing or intrusive, but in reality it can be comforting to know that someone cares.
When asked what she didn’t find helpful, she immediately responded that having information withheld regarding her condition and her family members being less-than-supportive when choosing to seek alternative resources for treatment was frustrating. She also cautioned that patients should be weary of becoming overly informed through internet research, as the information does not always apply to all patients and can lead to undue anxiety. I learned that oftentimes family members can become so concerned about treatment and prognosis that they tend to forget that the patient is a person who may be mourning the loss of self, and, in Patricia’s case, the concern of possibly losing her hair. Families should seek to be supportive even when they feel that their loved one should be focusing on survival rather than cosmetic concerns. From Patricia's and my own experiences, I learned that it is important that patients ask questions, seek second opinions, and be open to nontraditional forms of treatment. Remember that in the case of misdiagnosis or serious illness, there can be hope and a light at the end of the tunnel.
Note: The names of individuals have been changed for protection of their privacy.
If you know of someone who may be facing a health crisis, here are some helpful resources:
Air Lifeline: A national non-profit charitable organization of more than 1,000 private pilots who fly ambulatory patients who cannot afford the cost of travel to medical facilities for diagnosis and treatment.
St. Louis Help: St. Louis health equipment lending program that accepts donations of new and used home medical quipment (hospital beds, wheelchairs, portable commodes, canes, crutches, walkers, etc.), cleans the equipment and then loans the equipment, at no cost or fee, to anyone in need.
The Wellness Community: The Wellness Community helps people affected by cancer enhance their health and well-being though participation in professional programs offering emotional support, education, and hope.
Aline Hanrahan is a Provisional Licensed Professional Counselor practicing in St. Charles County and servicing St. Louis County. She specializes in child, individual, and group counseling and has serviced the mental health and public school systems for 20 years.
