Prevention & Awareness

The Connection We Aren’t Talking About

I was on Facebook when I stumbled across the video of a news clip that recently aired in the UK. It was an interview with the mother of Lily-Anna Winter, a thirteen-year old girl who died by suicide in May of 2017. Although I did not know Lily-Anna or her family, this was the type of story that would have a lasting impact on me.

Five weeks before she died, Lily-Anna was diagnosed with a rare and invisible illness, Ehlers-Danlos Syndrome. I too have Ehlers-Danlos Syndrome. Our shared Facebook support networks are the reason the interview with her mom traveled around the globe to my computer screen. But I think Lily-Anna’s story landed with me for reasons much more significant.

I am both a mental health advocate and a chronic illness warrior. I have always struggled to explain to people how important I believe the connection between chronic illness and mental health is. I have even had difficulties finding research on this topic, with the only real evidence being about the connection between chronic pain and depression. Don’t get me wrong, I think that is an important discussion to have. But what about everything else?

Chronic illness and mental health are intrinsically connected, in a few distinct ways:

Searching for a diagnosis takes an emotional toll on the patient. The path to a rare illness diagnosis is often paved with misdiagnosis and misunderstanding from medical professionals. The specialists for these illnesses are often located at the best hospitals, in metropolitan areas like Boston or Baltimore. Unfortunately, there are many providers who still don’t know the diagnostic “red flags” and will not be able to properly diagnose the patient in need. The inability for many providers to draw the connection between symptoms and a diagnosis often leads to a feeling of misunderstanding and hopelessness in the patient. Further, struggling to find a diagnosis can take a toll on the patients support system. When friends and family do not understand why their loved one is not able to participate in certain activities, restricted because of their illness or symptoms, they tend to distance themselves. For patients, not having the ability to say, “this is the illness I have, and this is why I am restricted,” causes confusion and disconnect from their family and friends.

Coping with the truth and adjusting your lifestyle can be shocking. Getting diagnosed with a chronic illness is, in many cases, traumatic. Many of these invisible illnesses, like Ehlers Danlos Syndrome, are incurable. This process can be discouraging and frightening. For many, mental health is rarely incorporated into patient’s complex treatment plans. Even the most knowledgeable, understanding, and caring health care providers seem to overlook this part of a plan that may be vital for many of their patients. Part of this is due to the distraction of constantly treating physical symptoms.  

Finding mental health support is particularly difficult. As we know, finding the right person to talk to is a trial-and-error process. This is only more complicated when the patient looking for help has a rare disease. There is a great deal of misunderstanding that comes along with a chronic illness diagnosis. Whether or not people try their best to have compassion for you, it is difficult to connect with someone who has not experienced what you experience.

Lily-Anna’s chronic pain started when she was nine years old. The pain and fatigue caused by her invisible illness went undiagnosed for years. Without a diagnosis, she was unable to receive the proper symptom management and treatment. She was also missing out on the opportunity to receive counseling or mental health treatment specific to the illness she was living with.

Raising awareness, not only about chronic illness, but about mental health, is incredibly important for this issue. We know that staying silent on problems like this can lead to stigma and shame. To avoid that, we need to talk about this connection and find more solutions.

Lilly-Anna’s family is working to form a charity that will work with The Ehlers Danlos Society and mental health organizations to raise awareness for earlier diagnosis, as well as target children at the point of diagnosis to ensure they receive proper mental health support.

This idea can be grown and replicated for many more of the chronic illnesses that exist, like gastroparesis, Lyme disease, fibromyalgia, arthritis, endometriosis, celiac disease, asthma, chronic fatigue syndrome, lupus, and many, many more. There are over 100 million people in the United States who have one or more chronic health conditions.

To make progress on this problem, and prevent more stories like Lilly-Anna’s, we need to continue the conversation on the connection between chronic illness and mental health.

While the issue is multi-faceted and complicated, it is vital that more people suffering from these invisible illnesses receive the mental health support they may need.

To read more about Lilly-Anna:

To read more about Ehlers-Danlos Syndrome: