How the “Long-Hauler” Experience Echos Chronic Conditions
Post-Covid-19 survivors are having symptoms that mimic the experience of people living with chronic illness and trauma
Recently, 60 Minutes came out with a video describing the experiences of those who had Covid-19 and are still suffering from symptoms months later. The condition has been recognized as “Post-acute COVID-19 Syndrome” although the individuals call themselves the “long-haulers”.
In the thirteen-minute segment, individuals and medical experts talk about the havoc wreaked upon the bodies of those with post covid symptoms. The video stated doctors have “never seen anything like this”. However, the language used to describe the experiences of post-Covid patients echos that of individuals who live with chronic illness or experience the long-term effects of trauma.
The Mirror of the Virus’ Effects
Described by Sadie Nagamootoo as a tornado that “kinda leaves, but leaves something behind”, the symptoms affect all parts of the body. This descriptor also fits those who have gone through traumatic experiences where the impact isn’t necessarily visible, but the mental and physical symptoms manifest themselves later on. Some common trauma symptoms are mood changes, increased anxiety, insomnia, muscle tension, and fatigue. These also coincide with symptoms reported by post-Covid patients. Extreme mental fog is also common for those who have experienced chronic or complex trauma.
Muscular issues reported by “long-haulers” in the video include pain, aches, and a sudden loss of strength. These are common symptoms for those living with chronic illnesses. Scrolling through the comments section in the video, you can see many reporting the similarities of this to their own experience with auto-immune disorders.
Perhaps one of the more frightening similarities seen by “long-haulers” was the experience of going to doctors and as stated in the video “to be told what you are feeling is not real”. This dismissive suggestion of “it being in your head” is a painful experience undergone by “long-haulers”, those living with chronic illness, and trauma victims alike and is essentially gaslighting by medical professionals.
Nitza Rochez, another “long-hauler”, mentioned that “nobody can really understand or relate to you unless they’ve had the same problem”. This line shows the isolating nature of going through something that is seemingly uncommon. While it is referring to the rather recent threat of Covid-19, this notion of others not understanding unless they’ve also gone through the same thing is a very common to those living with chronic illness or trauma.
What More “Long-Haulers” Mean
In the video, Dr. Zijian Chen relates the increased pool of patients to that of what occurred from the 9–11 attacks, but on a much larger scale. 9–11 was a physically harmful event and an extremely traumatic one. Individuals, families, and businesses were left healing from the tragedy for years afterward. Dr. Dayna McCarthy, who also experiences long-hauler symptoms, notes that the increase of this pool of patients brings other concerns such as the impact of this on healthcare.
The rising Covid-19 cases and the potential increase of “long-haulers” also indicates the increase of chronic illness patients as a whole.
We currently live in a very ableist society. In “Words Matter, And It’s Time To Explore The Meaning Of “Ableism”, Andrew Pulrang talks about harmful beliefs surrounding ableism and how it permeates throughout our way of living. It also mentions the larger structures at play, such as laws that explicitly allow for the restriction of freedom for those with disabilities. There have been greater strides in educating the public about the common behaviors and social structures that harm those with disabilities. However, there is still a lot of work to do.
It’s important to recognize and educate ourselves about these beliefs and behaviors that exist in our society and on systemic levels. While in the video, the more polarized example of previously fit individuals experiencing post-Covid-19 symptoms was given, what it does bring to the surface is not something unheard of, it’s something that was hidden.
Covid-19 illuminates how we handle, view, and react to chronic illness. Those living with chronic illness or long term trauma learn early on that it is not something that goes away. It is something you learn to live with by using various methods to mitigate the symptoms.
Connecting the Long Haulers
Although the catastrophic effects of Covid-19 can leave “long-haulers” feeling isolated and depressed, there are groups available to help connect the community. In Facebook Groups like Survivor Corps and Long Haul Covid Fighters Round 1, a safe place has been given to Covid-19 survivors to find support and compare experiences as well as connect them to medical research groups. From tinnitus to hair loss, to intense muscle fatigue, survivors can ask for help on possible treatments or at least know if others are experiencing the same thing. Online groups working in tandem with research centers such as Mount Sinai allow for more commonalities to be revealed.
There are a lot of unknowns about this situation. However, the similarities of this new threat to existing struggles faced by many today can help connect people together. It is important now more than ever to listen to the voices of those with disabilities and other chronic conditions and empower them to dictate change where it is needed.
The increase in “long-haulers”, who are mainly in the 20s to 40s age range, means more individuals who will come in contact with the societal and systemic friction existing for those living with chronic conditions.
Some questions that we can ask ourselves now are:
What can we learn from the handling of chronic illness in younger people today that can help “long-haulers”?
How can we as a society educate and inform ourselves on ableist behaviors and practices to reduce the friction experienced by those with chronic conditions?
How must our healthcare system change to handle the burden of cost and labor introduced by the increasing pool of “long-haulers”?
“Long-Haulers” are experiencing a collective trauma that has varying tenancy in the body. The trauma can be both physical, as a sudden, violent, and unpredictable attack on their bodies, as well as mental as they work through depression and afflictions to their previous way of life. By looking and listening to the experiences of those who are living with chronic illness and are battling with the effects of long-term trauma, we can inform ourselves on how to create an environment of connection, inclusivity, and support for individuals who are in their battles for the long haul.
Thank you to my two sensitivity readers out there. Your feedback helped me stay on track and gave me the pathway to further educate myself.
