Invisible chronic illnesses, as the name suggests, are often ignored and misunderstood, and people who have these conditions face numerous challenges, such as debilitating pain or fatigue, and judgment from others due to the unseen nature of the disease. Because people with these diseases look 'healthy' from the outside, other people may think that they are just exaggerating the illness. Scarce medical knowledge about many conditions could also lead to mismanagement.
In 2019, Hope Hill was diagnosed with Behcet's Disease, a rare neurological autoimmune disorder. This disease is rare and little is known about it, especially in the US, which resulted in great difficulty managing it. The experience led Hill to found the non-profit organization Working with Hope, Inc which seeks to raise awareness about invisible chronic illnesses and provide support to people who are living with these conditions.
According to Hill, she had been experiencing symptoms of the disease ever since childhood, but doctors ended up misdiagnosing her until much later in life. The lack of knowledge about rare medical conditions had a huge negative impact on her life, which caused a cycle of chronic-unemployment that had devastating effects on her family financially.
“There is a false stigma associated with invisible illnesses that causes issues in the workplace. In order to ask for assistance and accommodations you run the risk of falling prey to those stigmas. Self-disclosure is very challenging. I myself found it difficult to disclose my illness to my employer. I actually flew out to the home office to meet with him and explain my newly diagnosed rare disease. I had no idea how I was going to perform the job duties that were required of me due to the symptoms I was experiencing. However, I could not bring myself to tell him. I wanted so badly not to have this illness, to just be normal. But a few months later, I lost consciousness while driving a company car and was unable to return to work.”
Hill founded Working with Hope to reach out to millions of people who, like her, are dealing with invisible chronic illnesses. These include not only the patients but also their loved ones and family members, who also feel the non-physical effects of the illness. Dealing with a chronic illness can have a huge financial burden, jeopardizing future opportunities for these individuals' children and generations to come.
"I am passionate about helping individuals with invisible illnesses find the resources they need to manage their conditions, change stigmas, and put an end to chronic unemployment. Health is not just physical, but mental as well, and the same is true for work. It's imperative to recognize the connection between these two aspects of our lives. Unfortunately, many overlook the psychological and spiritual components of health, treating individuals as if they are robots without a soul. However, mental illness is a medical condition that should be treated with the same level of attention and care as physical illness. It's time for us to recognize the importance of mental health and recognize both physical and mental illness equally."
Hill says Working with Hope is guided by four main principles – Reliance, Acceptance, Respect, and Empowerment (RARE).
“Reliance in being true to yourself and doing all you can to care for yourself, as well as realizing that we are mutually reliant on others, we are interdependent. Acceptance is accepting the good and bad things in life. I became a better human because of my rare disease. All of the pain and hardship, in the end, brought me the greatest joy I have known. When I accepted the joys in life alongside the horrors, that is when my soul found peace, perfect harmony, and love. Respect everyone's purpose in life, including your own. And finally, empowerment that is created when everyone's worth and value is recognized.”
Working with Hope operates the R.A.R.E. program, which serves military veterans and people with invisible chronic illnesses, along with their families. The project provides free, non-clinical art workshops that foster a connection between mind and body, which is healing. Hill states “While exercise benefits the body, and meditation benefits the mind, creating art benefits both. It is essential in opening the mind to new ideas and ways to solve everyday problems.” Its program also includes lectures from physicians, psychologists, and other health service providers to help people manage their illnesses. R.A.R.E. also sponsors Fam Jam sessions which strengthen the bond between couples, parents and children, in a fun way to inspire movement, share joy, and create a work of art.
According to Hill, Working with Hope also is establishing a fund to assist individuals who are looking to break barriers to employment, entrepreneurship, and philanthropy by providing resources, support services, coaching, and funding assistance to help individuals start and grow their own businesses, create a flexible work environment, and positively impact their communities.
“We offer individual grants that will help them get training or certification, in partnership with their employer to change their career path to one they can find success. If that is the best path for them. In some cases, we work with individuals one-on-one and help them connect with other non-profits to create a strategy for them to take control of their lives and create their own opportunities for success, while also encouraging philanthropy and community engagement. This will help the person have more control over their illness and improve their quality of life.”
Hill says there is a big void in resources for disease management when it comes to chronic illnesses, due to a lack of resources, and Working with Hope aims to help address that. Due to Behcet's Disease being so rare in the United States, Hill got most of the information about her condition from overseas, such as from the UK.
"When you're diagnosed with a chronic illness, taking control of your healthcare becomes a necessity, not an option. The complexity of our healthcare system and policies often leave patients with unanswered questions about managing their illness. While doctors may say that chronic illness can be managed, many people struggle to find the necessary resources to do so. I consider myself fortunate to have had people who were there to help me navigate this complex system and find the resources I needed. Unfortunately, the majority of people are unable to do so, and it's my hope that we can work together to provide them with the resources and support they need to manage their illness effectively."
Name: Hope Hill
Email: [email protected]
