According to the American Journal of Nursing, “people with intellectual or developmental disabilities suffer from the same chronic diseases and conditions as the general population but are more likely to have physical and psychological comorbidities. This places them at higher risk for experiencing pain and for having more frequent or severe pain.”1
This is an issue of equity. Though people with intellectual and developmental disabilities experience higher rates of chronic pain, pain is often underrecognized and undertreated for this population1, 3. This is especially true of those with diverse communication, whose communication about pain may be misinterpreted or perhaps even labeled as “challenging behavior”. Black, Indigenous, and People of Color (BIPOC) are additionally impacted by systemic racism, including disparities in accessing healthcare, getting accurate assessments, and receiving appropriate treatment for chronic pain.4 BIPOC communities, most specifically Black people, have and continue to face medical care bias that compounds disparities.
When planning with someone who experiences a chronic pain condition, it will be important to first listen and learn what they have already tried and what works for them now. The ‘4 plus 1 questions’ tool is one way to facilitate and record this conversation.
If a person is new to experiencing chronic pain, they may not yet feel like the expert or their own best advocate. Throughout each person’s unique journey with chronic pain, the right tools, supports and people can help the person to be the expert and best advocate.
As a person who experiences a chronic pain condition, I can share that pain impacts my ability to communicate and process information, especially when I am experiencing a pain flare with severe muscle spasms. When this happens people often want to ask, “what can I do to help,” but at that point I am unable to ask for the things I want and need, and it leaves us both feeling more frustrated. I have learned to share with those close to me what helps me when I’m experiencing increased pain so it’s a win-win for all. A person’s support needs for managing chronic pain may differ at times, depending on a multitude of factors. For instance, temperature changes, activity levels, medications, and other external stressors can all impact a person’s pain experience.
When planning with someone who experiences chronic pain, it will be important to consider a variety of factors and supports, such as:
Adapting activities and environments for accessibility and comfort:
If a person is planning a long trip, consider additional break times and finding destinations that are accessible, especially for those who uses mobility supports. Occupational and Physical Therapists can help a person explore options for adapting activities to support comfort and independence within a person’s daily routines and activities. Consider engaging in wellness related activities virtually during this time, as many community-based events and activities are now offered online!
Mental Health and Wellness:
People managing chronic pain can benefit from a “toolbox” of different health and wellness related tips and tools to help manage pain. The person may already have great tools that work for them, and medical professionals may also have ideas on new tools to try. These could include ice/hot packs, therapeutic pillows, Transcutaneous Electrical Nerve Stimulation (often referred to as a TENS machine), body wraps/therapeutic taping, aromatherapy, tools for self-massage and other general comfort items.
Pain Management Clinics:
These programs often offer support with medication management, resources for best-practices in managing chronic pain, and self-help techniques for distracting one’s brain from the pain. The techniques can interrupt pain signals through methods ranging from tactile/sensory supports to bio-feedback coaching sessions.
Community Health Centers and other Holistic Practices:
Several types of non-pharmaceutical pain management supports can be considered in consultation with a person’s medical team. These supports can include massage therapy, acupuncture, restorative or therapeutic yoga, relaxation/breathing techniques, life-coaching, and dietary or other nutritional supports.
Chronic Pain Support Group:
These can provide an outlet for the person to share and connect with others. This also helps to combat feelings of isolation and loneliness. Many chronic pain support groups have shifted to virtual during the COVID-19 Pandemic.
Mental Health Services:
Managing a chronic pain condition can have a significant impact on a person’s overall mental health and wellness. The person may be experiencing grief and loss, as they may no longer be able to do the things they once enjoyed or had hoped for their future. Often the activities we choose to do give us a sense of identity and for some people experiencing chronic pain they may also be processing “who they are now.” People with chronic pain are three times more likely to develop symptoms of depression or anxiety, and people with depression are three times as likely to develop chronic pain.2 Depression can cause unexplained pain, such as headaches or back pain, and people who are depressed might have difficulty doing physical activities and other wellness practices. In turn, chronic pain can lead to trouble sleeping, increased stress, or feelings of guilt or helplessness associated with depression. This can be a hard cycle to break and being intentional about helping to break this cycle is important.
A few tools that have helped me navigate my chronic pain experience is the LifeCourse™ Trajectory and Integrated Support Star tools. I started with using the trajectory tool to consider what I want and didn’t want in my life. It helped me see the things that I can do to help move towards the life I want and to avoid a life of isolation, depression, and worsening symptoms. I then used the Integrated Support Star to help me explore different supports and resources available to help me on my path.
Wellness Planning:
If you are in a support role for someone who experiences chronic pain it is important to understand it impacts all aspects of a person’s life. It can be overwhelming for the person, especially when it comes to navigating supports. No matter how far along a person is in their pain experience and ability to manage pain, each person can benefit from proactive conversations about options for pain management. One important message to remember is that people who experience chronic pain are working to “quiet the pain” enough to be able to do the things we enjoy. The focus is less about how to completely stop the pain. Really listening to person and their actions can help you in your support role. If the person’s pain is at a consistently high-level, where they are unable to enjoy life, then we must start with addressing the need to reduce the pain immediately. It is about supporting a person’s dignity to live comfortably and strong advocacy may be needed.
Consider how a person’s chronic pain might be addressed in their ISP and day to day support:
- Chronic Pain Protocol- Outlines general supports that help the person manage chronic pain. This can help supporters to provide consistent, quality care around chronic pain that works for the person. It incorporates what is ‘important to’ the person and lessons learned about what does and does not work for them.
- “Pain Day Routine” Support Document- A customized tool developed with the person to outline what supports are needed and how they may look different when they are experiencing an increase in pain.
- Person Centered Information Form- Outlines communication strategies that work best when the person is experiencing pain
- Communication Chart– If pain impacts a person’s communication, a communication chart can be a powerful way to help supporters understand how the person communicates when they are experiencing elevated pain levels, and what they can do to help support during these times.
Advocacy:
We need people in our corner! Creating a One-Page Profile to share with medical professionals can help a person in their medical advocacy efforts. One-Page Profiles can also be a powerful tool to help others understand the person’s communication about pain.
| About the author Jennie Heidrick started with the OTAC program in 2009 and has been providing training, consultation, and mentorship services for Oregon’s IDD service system. Jennie is passionate about supporting people with IDD and their families, in addition to collaborating with the teams of people throughout Oregon who are committed to the same goal of protecting people’s rights and ensuring people have access, information and tools to live their best lives. Jennie experiences a chronic pain condition, disability and is a strong advocate for others who experience chronic pain and disability as well. |