By Jodi Taub, LCSW
The movie "Everything, Everything" is the portrayal of a girl, supposedly diagnosed with a severe combined immunodeficiency (SCID), who is trapped in her home at the recommendation of her mother and physicians because she is "allergic" to the outside world. Many patients, caregivers and advocates in the primary immunodeficiency (PI) community have strongly reacted to the misrepresentation of this disease. As a therapist with a PI, I wanted to talk about why this teen drama holds so much weight.
Shortly after being diagnosed with a PI in 2006, I, like many of the patients diagnosed with PI, had never met anyone like myself. While searching to connect to a patient community for peer support, medical information and connection, I became involved with the Immune Deficiency Foundation (IDF). Since 2007, I have been volunteering for IDF as a therapist helping children, adults and their families to cope with the emotional issues that come with managing a rare chronic illness.
Despite the fact that there are more than 300 different forms of PIs, affecting approximately 250,000 people in the US,1 PI is less known than many other disease states. In fact, the only public representation is David Vetter, known as the "Boy in the Bubble," who lived in a self-contained environment until his untimely death at the age of 12 from a failed bone marrow transplant.
In 2017, David Vetter still exists as our only public face of PI. The problem with this sole representation is that he lived in a limited world and then passed away. Because of the tireless efforts of advocates and their physicians to ensure better research and treatment, life with SCID is no longer a death sentence. There are many children and now adults who are living relatively normal lives with SCID and with other forms of PI. However, this is not the public perception. Imagine what a parent must feel like when they learn their child has "Boy in the Bubble Disease" and that’s all they know?
All of the 250,000 Americans with PI still have to cope with the lack of public awareness. The average age of diagnosis from onset of symptoms to diagnosis is currently 15.3 years (IDF latest statistics). This means that many patients and caregivers live with serious infections and debilitating physical symptoms for years without a clear diagnosis or treatment. Not being able to identify the source of your illness is not only stressful from a physical standpoint but from an emotional one as well. As a result, patients and family members miss out on the much-needed empathy from friends, peers, family members and co-workers.
The most hurtful of such complaints include but are not limited to comments such as, "You don’t look sick, maybe you have AIDS?" and false accusations of Munchausen by proxy. As I wrote in the "Life Management Section" of the IDF Patient and Family Handbook, 5th edition,2 "Although not ill-intended, people often do not understand how their comments, minimization of the illness or lack of understanding can really undermine your sense of self worth and leave you feeling misunderstood or alone."
It is difficult enough having to cope with the physical manifestations of a rare chronic illness, but having to constantly explain, defend and justify your illness only creates further shame, resentment and fear. The No. 1 complaint that I have heard from patients over the years is that they wish that other people understood. I know this to be true not just professionally, but from a personal perspective. I am a therapist with a treasure trove of coping skills, support and resources, and the misunderstanding around my illness is still difficult to take, even 11 years after being diagnosed.
There are several ways that "Everything, Everything" has dangerous implications and can be traumatic for our community. For patients or caretakers accused of Munchausen by proxy, they again face peers, friends or families who, after seeing this movie, may reinforce some of these themes. No patients, caretakers or parents deserve to relive this false and painful fallacy. We are asked again to defend our illness, creating further shame and resentment.
Another concern about this movie is the portrayal of adolescent love and the targeted audience. For the parents of children who have PI, many struggle with allowing their kids to have normal teenage experiences while not risking their health. In this movie, the main character makes the choice to risk her health for quality of life. This sends the message that life with PI is not worth living. Recent studies have shown that patients with PI have a greater risk of anxiety and depression. For example, Anxiety and Depression in Adults with Primary Immunodeficiency (PID’s) - How Much Do These Patients Experience and What Factors May Increase Patients’ Risk?3 sends a message to a group of at-risk teens that is both disconcerting and irresponsible.
If this movie character, Maddy Whittier (played by Amandla Stenberg), was one of many public faces of PI, the misrepresentation of a SCID would not be so consequential. However, because this is the first movie character since "The Boy in the Plastic Bubble," it carries a much greater burden. What the PI community deserves is an opportunity to show what life with PI really is. The importance of, "Everything, Everything" is that it calls for an accurate public face of PI. With diagnosis, care and appropriate medical treatments, we can live full lives with PI. With proper public perception, we don’t have to live in the "Bubble" anymore.
- National Institutes of Health. Primary Immune Deficiency Diseases (PIDDs). Accessed at www.niaid.nih.gov/diseases-conditions/primary-immune-deficiency-diseases-pidds.
- Immune Deficiency Foundation. Patient and Family Handbook for Primary Immunodeficiency Diseases. Accessed at primaryimmune.org/wp-content/uploads/2016/03/IDF-Patient-Family-Handbook-5th-Edition-2015-Reprint-Chapters-32.pdf.
- Heath, JL. et al. Anxiety and Depression in Adults with Primary Immunodeficiency (PID's) — How Much Do These Patients Experience and What Factors May Increase Patients' Risk? Journal of Allergy and Clinical Immunology, Volume 137 , Issue 2, AB256. Available at www.jacionline.org/article/S0091-6749(15)02665-2/abstract.