Long COVID and People with Disabilities

We know that people with intellectual and developmental disabilities are at greater risk of contracting COVID-19, and that the effects they experience are more severe. It may be that living in congregate settings where they can become infected more easily, greater difficulty practicing preventive techniques, and difficulties communicating when they don’t feel well, all play a part in making COVID-19 a larger problem than the general population has to face.

COVID-19 infections typically last around two weeks for most people, but many individuals are reporting symptoms that last much, much longer. These symptoms may continue as long as a four or five weeks, or even for many months. The public has coined the term “long COVID” to describe when this happens.

COVID-19 can cause significant damage to the heart, liver, kidneys, lungs, nervous system, and other organs. Symptoms of long COVID may not be the same as when the virus was in its’ acute stage. It may be difficult to know if someone with an intellectual or developmental disability has long COVID as they may not be able to tell us what they are feeling. It’s important then to recognize behaviors that indicate something else is going on and understand that this may be their only way of communicating their pain and discomfort.

Difficulty breathing or shortness of breath is a common COVID-19 symptom. For someone who can’t tell you how they are feeling, it may come across as becoming tired more easily, or refusing to perform self-care. It might also be demonstrated by increased agitation or anxiety, restlessness, refusing to eat, or requiring more time to complete meals.

For someone experiencing increased exhaustion, it may look like a lack of interest in regular activities, refusal to participate in activities he or she once enjoyed, falling asleep at irregular times of the day, or refusing to walk even short distances. It may be evident by the individual refusing to take part in usual activities of daily living or an inability to concentrate. There may be changes in sleep patterns or an increase in confusion.

Physical symptoms such as chest pain, headache or stomach pain may also be more difficult to identify. They may present as agitation, anxiety, refusing to eat, head-banging or withdrawal from areas of light or noise.

There are many more symptoms that may be masked when one has long COVID and isn’t able to express his or her feelings. To receive a copy of the fact sheet on Long-haul COVID with a list of symptoms and how they may look in a person with intellectual or developmental disabilities, please contact Disability Network Lakeshore at 616-396-5326 or chris@dnlakeshore.org and request Long-Haul COVID.