Chronic Pain and Intellectual and Developmental Disabilities (IDD)

Health and Wellness

Studies have shown that pain has long been recognized to have a negative effect on emotional status, ability to work, social activities, interpersonal relationships, and functional ability and leads to the increased utilization of healthcare services.

I chose this topic because it is personal to me. I have bone-on-bone arthritis in my hip, and my quality of life has been greatly effected because the pain is exhausting.  With that said, I am lucky because I have the tools to either ask for help or get help myself.

Can you imagine having chronic pain and not being able to express your needs, or worse yet, not being able to express it in a way that others can understand? There are three main challenges when dealing with pain in the the disability community:

Problem # 1:

There may be an inability to self-report pain. Self-reporting in the most commonly used and valuable way to assess a person’s pain. It is a fact that people with intellectual and developmental disabilities (IDD) have been found to experience pain more frequently and to a higher degree than the general population. However, the limited cognitive and communicative abilities of individuals with IDD present a major obstacle in quantifying their pain, which makes pain assessment and pain management a huge challenge.

Problem # 2:

They may have a very different response or reaction to pain. We all know that the people we support can behave much differently than you and me in many situations. Pain is one of them. Individual behavioral responses to pain vary from an increase in activity, such as pacing and vocalizations, to dampening of behaviors, such as becoming quieter and isolating from others.

Problem # 3:

People with IDD have been found to have a higher pain tolerance. You might think this would be a good thing, but in reality, it could be VERY dangerous. There may be an underlying cause that, if not caught in a timely manner, could develop into something life threatening.

In conclusion, pain occurs with at least the same frequency in people with IDD, as with you and me. Identifying and measuring pain among them is clearly more challenging. However, considering the risk of under-treatment of pain in this population, people with IDD should be carefully monitored for any changes in their behavior and/or mood that may indicate the presence of pain. If you notice changes, it is important to let your medical team know so we can work together to get people the care they need.


Sue Sproule is the Director of Nursing at The Arc of Monroe. She has 44 years of experience in nursing and four have been at The Arc of Monroe. To connect with Sue, email her at

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