Are you an arthritis patient, or a person living with arthritis? A lupus patient, or a consumer of health care who has lupus?

The word “patient” has taken on a negative connotation in the medical community over the past couple of decades. On one hand, “patient” can conjure up a vision of passive consumption of health care, of someone who waits for their doctor or provider to dole out their services and expertise.

This has led to the use of words such as “consumers” and “clients” — which convey that people have a bigger say in the health care decision-making process, including choosing which doctors to see or hospitals to use; which medications, tests, and services to get; and what to pay for health care services.

Some prefer to describe themselves simply as people living with a given condition, because using the word “patient” feels limiting — anyone who has a diagnosis of rheumatoid arthritis, say, is so much more than just an RA patient.

“The debate about nomenclature is growing, and it’s more than a matter of hair-splitting semantics,” according to Robert Pearl, MD, in a blog on Forbes. “Among passionate advocates on both sides of the argument, emotions run high.”

“Sometimes we view ourselves as patients, including when we await surgery for an acute, inflamed appendix. And at other times, such as when we compare the costs and benefits of different health insurance plans, we’re clearly consumers,” he wrote. “But most of the time we are both.”

As another doctor noted in an article published in the Canadian Medical Association Journal, the actual name matters less than how health care providers and patients communicate with and treat each other. “Isn’t shared decision-making part of contemporary medicine, regardless of the names?” she asked.

The discussion over whether people with chronic illness prefer to be called a patient or something else generated much discussion during a recent #CreakyChats Twitter chat. Here’s what our community had to say about their preference:

1. I’m not a patient, I’m a boss

Until doctors start treating people with chronic pain like patients again, I’m the boss and they’re the employee. — @VampWriterGRRL

2. I’m a patient, but it’s not my identity

I’m impatient! But when I’m actually at the doctor’s or a clinic, I am the patient. It is not my identity. — @mactavish

3. Being a patient gives me power

Yes I do define myself as a patient. I am in need of medical care for my #RheumatoidArthritis & I do advocate the rights that patients have. Not everyone understands what it is like to have this disease but I never want to underestimate my power as a patient. — @MichaelKuluva

4. I’m so much more than a patient

A patient? Yes. ONLY a patient, no. I’m so much than my disease. But in my medical aspect, I’m a patient, but I’m also an advocate. I am a voice. I am a person. I’m more than some medical ID, 43 year old male with psoriatic arthritis. — @BamaEd

5. Being a patient is my truth

Yes. I am. I don’t see weakness in that word. Its the truth. I live with a chronic illness. — @raquelonpurpose

6. Being a patient makes me part of a community

While some prefer ‘client’/‘consumer,’ I’ve come to embrace being called a ‘patient’ b/c of the colloquially named ‘patient communities’ that have supported me. I also fight for rights for patients with pre-existing conditions, and will identify myself as such. — @kcm5K

7. I’m a patient only in a medical setting

I will use the word ‘patient’ while in the company/care of medical personnel. However, personally, I do not define myself as a patient because I am more than my disease(s), treatment(s) or procedure(s). — @bodymindconsult

8. I prefer ‘patient’ to ‘sick person’

Well I’m conflicted in answering. I found this definition: a person receiving or registered to receive medical treatment. synonym: sick person. By definition I’ll always be a patient but I don’t care to be a “sick person” because that implies that it’s temporary. — @dividivigirl

9. ‘Patient’ shouldn’t be a negative word

I am a patient so I’ve no shame identifying that way. Perhaps it is moreso that I reject anyone’s negative attributes to the word. As patients we are often disregarded, overlooked, or undermined so sometimes it is hard to feel confident as one. — @TiffanyandLupus

10. I’m a patient for now

Unfortunately until there’s better treatments to make my quality of life significantly better, a patient is basically all I get to be. Sure there’s lots of things I’d rather do than manage my health 24/7 but that’s all I’ve got for now. — @KatarinaBrandt

11. I can’t ignore being a patient

Yes, but only b/c once X (for me, #Lupus) requires SO much time, effort & attention it becomes impossible to ignore its role in your life. In the way a parent’s defacto lens is parenting, at a certain point? 160 doc appts/yr? My lens became a professional patient. — @TheBigBrownGirl

12. I’m a ‘street-savvy’ patient

I define myself as a street savvy patient. I know enough to do self surgery but not enough to not do it 🙂 Some of my team treat me as their patient most it’s the industrial approach to treatment.
— @RABionic

Have Your Say

Follow @CreakyJoints on Twitter for ongoing education and support about living with chronic illness, and join in our monthly #CreakyChats to weigh in on future conversations like these.

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