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What Makes a Good Doctor for People With SMA?

Posted on January 13, 2022
Article written by
Bryce Parks

Having a good doctor you can trust is a vital aspect of health care for everyone, but it’s especially important for those living with spinal muscular atrophy (SMA). The qualities of a great doctor are a bit more specific if you’re living with SMA, but it’s definitely possible to find a specialist who has everything needed to make them the ideal partner in keeping you healthy.

Following are some of the key qualities I look for in a doctor.

Patience

One of the best traits a doctor can have when it comes to SMA is patience in the highest degree. On a surface level, patience invites trust and brings a stability to the environment that welcomes in-depth conversations. On a more personal level, people like myself are at risk for serious pain when not treated with care. A basic examination could be a real problem if a doctor accidentally moves a person with SMA hastily. Considering the rarity of SMA, it’s not uncommon for a typical doctor not to realize that a person with the condition is unable to move the same way as other individuals. Greater awareness of SMA on the doctor’s part can potentially save someone with SMA from a lot of otherwise avoidable issues. That awareness, in part, can come from a conversation — and patience is what makes that conversation possible in the first place.

Willingness To Learn

Honestly, some doctors know nothing about SMA simply because of its rarity. Doctors cannot know everything. After an initial meeting with a doctor, however, it’s reasonable to expect them to try to learn more about the condition. For me, a doctor is worth seeing consistently if they make the effort to learn about SMA — though finding an SMA specialist in addition, for the sake of safety, is a good idea. Some people would consider a doctor’s unfamiliarity with SMA to be a negative, but I see positives in compromise. Great doctors show willingness to understand and learn; great patients show patience and cooperation along the way.

Openness and Trustworthiness

I tend to have the most successful connections with doctors who are personable and invite trust. People who respect boundaries and find ways to match the openness of a conversation by sharing aspects of their own lives are usually good to talk with. Having a conversation with a doctor during a visit can feel a bit awkward since a guardian or caretaker is usually present in the room. Doctors who acknowledge the situation and offer privacy can help foster trust, especially with teenagers and young adults. Under the right circumstances, a person with SMA is more likely to respond positively and feel additional comfort in sharing information.

A Sense of Safety

You should always have a psychological sense of safety with the doctor. Regardless of their personality, they should not provoke any type of negative emotion during visits. I usually have a sense of discomfort at doctor’s appointments — but never because I dread my doctor. I like to remind myself that they are around for my own well-being, and I should harbor no negative energy toward people trying to help me.

The best part about finding a solid connection with a doctor is that they are there to stay for many years. Being open and cooperative can help in identifying a doctor with good traits and establishing a relationship based on trust.

What qualities do you look for in a doctor? Take the poll and share your thoughts below in the comments section.

Columnists on mySMAteam discuss SMA from a specific point of view. Columnists’ articles don’t reflect the opinions of mySMAteam staff, medical experts, partners, advertisers, or sponsors. Content on mySMAteam isn’t intended as a substitute for professional medical advice, diagnosis, or treatment.

All updates must be accompanied by text or a picture.
Bryce Parks has SMA type 2. He hopes to make a difference to people through a variety of creative forms. Learn more about him here.

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