During the years I’ve lived with rheumatoid arthritis I have been assessed and measured up and down—blood tests, joint motion, physical deformities, deficiencies, and limitations galore. And yet I cannot really say if any of it has actually been useful for me in living my life and managing my condition.
Sure, it helps to know my CRP as a tracker of my inflammation. But I am usually the one to say “I feel terrible,” then get the test done to confirm it. I don’t really learn anything new. I just get how I am feeling verified by a blood test.
The current model isn't helpful for my experience
Let’s just say I don’t find the medical model of measuring disability very informative or helpful for my personal experience. What I mean by the medical model is the traditional medical approach of measuring patients by counting deficiencies or abnormalities from the norm (which rarely exists in nature). My experience in life is that no one I have ever met is a perfectly healthy person. Everyone has issues!
Health issues vs a chronic condition
While a medical approach is needed for diagnosing health problems, I have not found it useful for managing a chronic condition. As my disease has progressed, medical model measurements have simply verified more damage. It is a method of documenting, not informing. This approach can be used for understanding populations, such as the damage caused by a chronic disease for a group of people. However, on the micro (or individual) level, it is not as useful.
Measuring my deficiencies is sometimes harmful
From a psychological and emotional perspective, I have found the medical approach of measuring my deficiencies sometimes harmful. When meeting new doctors, physical therapists, or other health professionals during my care many have focused on these measurements, instead of the bigger picture. I have experienced these medical providers discounting or dismissing my goals because the measurements told them it was impossible. Yet, I proved them wrong and did not continue to use them for my care.
A concept of disability that I find more useful considers social and economic context. The Americans with Disabilities Act embraced this frame for the law’s definition:
The ADA defines a person with a disability as a person who has a physical or mental impairment that substantially limits one or more major life activity. This includes people who have a record of such an impairment, even if they do not currently have a disability. It also includes individuals who do not have a disability but are regarded as having a disability.
This approach to disability includes the idea that it may be temporary or lifelong, that an experience of disability may change, and that it can be influenced by societal constructs and perception.
For example, my rheumatoid arthritis affects many life activities, but with assistive tools and adaptations, I can still live my life fully with these disabilities. It means the measure of my life is not about deficiencies, but instead about solving problems through adaptation. Yes, I need to understand how my disease affects my abilities—so that I can understand these challenges and learn to work around them.
Assessing my disability doesn't help me cope
What I believe is that measuring deficiencies does not help me cope with living with the effects of rheumatoid arthritis. Rather, understanding what activities are important to my life and using this knowledge to apply tools, create accessible circumstances, or problem-solve to achieve these goals is what makes a difference in my life.
From a holistic approach, measuring deficiencies and assessing disability through this lens can be both harmful and unhelpful. However, understanding abilities and goals through the perspective of the individual can be revealing, and also support achieving what is important to the person during their life.
Time for a new model?
I think the medical model approach is outdated and limited. For a 20,000-foot level view of a large group of patients, it makes sense to understand broad categories of disability. But for supporting individuals with RA, I propose we instead turn the measurement of disability on its head and assess the unique individual through how their condition affects their life activities and creatively developing solutions to help them achieve their goals.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?