Barriers for chronic illness are varied.
In this case, Mattie faced many barriers.
The first was the unknown. For many years, she did not have an accurate diagnosis to guide her care. Even after her diagnosis, she was not able to find qualified, competent care. There were barriers of distance and access to providers.
She also had barriers related to attitudes related to lack of understanding.
For Mattie, healthcare insurance coverage was not an issue due to her parents’ group commercial insurance policy; however, many times the providers that she needed were out of network making the out of pocket expenses excessive.
Parents of minor children also need to miss work for days and sometimes weeks making it potentially hard to maintain consistent employment. Access to paid time off work is a huge barrier for patients and families with chronic illness. Add to this the barrier of travel and lodging expenses related to going from provider to provider; some at great distances from their home. Without adequate income or insurance, compliance with treatments and medication is difficult. In addition, access to necessary medical equipment and treatments not covered by insurance add financial stress and may not be affordable for many.
Finally, access to regular social interactions are limited by physical limitations and excessive fatigue caused by the chronic illness.