Visits to the doctor are part of living with multiple sclerosis (MS). Whether you go routinely or once in a while, it is an ordeal. When you get to the office, you encounter challenges. We wondered what would make the visits better.
To learn more, we turned to community members on the MultipleSclerosis.net Facebook page. There, we asked you to answer this prompt: “Fill in the blank: If I could make the doctor’s office more MS-friendly, I would ____.”
You had some inspired ideas for changes.
Improving accessibility was your most common response. MS affects your ability to move with ease. You may use a walker or wheelchair. You struggle with balance. You shared your ideas for making the space easier to navigate with MS.
“Have automatic doors, not doors that weigh 50 lbs!”
“Raise the toilets! 17 inches is too low!”
“No steps to get in. Bathroom for disabled persons.”
“Use single-colored flooring. Keeping my balance and finding steady footing is almost impossible.”
“Wheelchair parking area.”
“Have more handrails in the hallways and exam rooms.”
“Invent exam tables so we can get on first, then raise them up.”
Revamp waiting areas
You would also make the waiting area a more friendly space. Many of you suggested improving the chairs. They are often uncomfortable and awkward to use. When wait times drag on, the chairs take a toll.
“Reclining chairs for excessively long waits.”
“Massage chairs while waiting and snacks and beverages. Let’s face it; our appointments are our social outings.”
“I would like chairs with armrests so I could get up easier and read magazines about MS.”
“Reduce wait times.”
“For those with optic neuritis and other vision problems, have forms, questionnaires, educational material, etc. in larger print, clearly copied, with increased contrast and magnifiers to improve the ability to read things.”
“Teach the front staff compassion and empathy.”
You struggle with the distances you navigate for an appointment. It is draining to go from your car to the front entrance, doctor office, exam room, and back again. Clinic layouts should consider how different diseases affect mobility. You would limit the amount of walking necessary for each visit.
“Put patients in the closest exam room.”
“Have the nurses that escort you in walk WITH you instead of faster and in front of you. Side-by-side is so much more friendly and feels so much better.”
“Have their offices closer to the building entrance.”
Dim the lights
Living with MS can cause sensitivity to light. The lighting in doctor’s offices is often triggering. You would change the lighting, making it gentler. Options for dimming would be helpful!
“Better lighting – no more harsh, bright LED lights.”
“Lose the fluorescent lights.”
“I would change the lights to not trigger some of my symptoms.”
“Dim the lights.”
It is not always MS
MS comes with a variety of symptoms. Some medical challenges you experience are not related to MS. Getting your doctor to understand that is challenging. You would like doctors to evaluate your symptoms. It should take time to determine if a symptom is MS-related or not.
“Not always have the doctors assume everything. You know your body and how it reacts better than anyone else.”
“Not to blame EVERYTHING on MS; my ingrown toenail isn’t because I have MS.”
“I understand MS comes with a lot of issues, but sometimes it’s not that, so I think they overlook things.”
Listen to me
When visiting with your doctor, you want to feel heard. You need them to listen to the wisdom you have to share about your body. Doctors see one moment in time. They need to hear what your body is like in the moments they do not see.
“Believe me when I tell them my symptoms and how long I’ve had them.”
“Stop saying we look “fine” and disregarding everything.”
“I am not making up my issues, am not a hypochondriac, nor seeking pain meds. Hear what’s being said, and let me know you hear and understand.”
“Understand that just because I “seem fine” today doesn’t mean I wasn’t just in bed for 2 days feeling terrible. Understand every patient is different.”