Written By A.M. Rossi
Content notes: acute onset chronic illness, medical ableism, chronic illness related grief, immunocompromised isolation, accessible hiking
Despite a couple relatively minor issues here and there, I was a picture of health
prior to 2021. I worked 9-5 three days a week while also in graduate school, led a ministry at a church, had a thriving social life, and walked everywhere since I did not (and still do not) drive. I could walk up to 10 miles a day in the midsummer’s heat and went on frequent runs. All of this came to an end in 2021. I managed to finish my Master’s Degree just a couple months prior to the rapid deterioration of my health. I became ill (unrelated to COVID-19). I lost weight and experienced fainting, chest pain with shortness of breath while standing, heart arrhythmias, bouts of debilitating nausea and sickness, and a vast array of symptoms that affected my entire body. After months of seeing many doctors (a majority of whom dismissed my symptoms as “anxiety”), I was diagnosed with Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), gastroparesis, vascular compressions, and other comorbid chronic health conditions that greatly affect my day-to-day life. I am no longer able to walk nearly as much as I did previously, and often when I do walk distances, I need to use mobility aids or even bring out my wheelchair if my symptoms worsen. I am immunocompromised as a result of my illnesses and live primarily in isolation with my husband who also has a chronic health condition. This inability to participate out in the world like I used to has led to difficulty with mental health, maintaining friendships, and feeling properly connected with the world and others. Though my illness presents my husband and I with such challenges, it has led us to have a greater appreciation of nature. Being able to find a refuge in nature, though limited, has allowed me to find peace I otherwise would not have. Incorporating hiking (when I can) into my life with chronic illness has been a challenge in and of itself, but is important for my mental health.
I can only go on short hikes in Autumn and Winter. I have heat intolerance due to POTS and am mostly homebound- sometimes bedridden- in the Spring and Summer. From making sure I have enough water, electrolyte powders, emergency medication, my medical ID, and my collection of joint braces and stability aids, to having to plan hiking trips on days and times when the parks are less crowded (as an immunocompromised person, it is essential that I avoid crowds), even short hikes with chronic illness require extensive planning and preparation. We have often planned a hiking trip with excitement, but I ended up feeling too ill to go, leading to feelings of immense disappointment; however, when I am able to go for a hike, the feelings of joy and gratitude are inexplicable.
Photo A: my husband, Eric, and I on our first hike since getting ill.
Photo B: my close friend, Maddie, and I posing on a rock after reaching the overlook.
The first two photos are from my first hike post-illness. Though it was a short hike, my husband and best friend held my hands the whole way through, making sure I did not fall or get hurt. Having shared my first hike post-illness with two people I deeply cherish is something for which I am very grateful. I lost a majority of friendships due to my illness. Many people accused me of “faking it for attention”, or criticized me otherwise, while others simply walked out. Eric and Maddie held my hands the same way they have been holding my hands throughout the span of my illness. Maddie is one of my longest and closest friends but because we live hundreds of miles away from each other, we only see each other once or twice a year. Maddie is very understanding and accommodating of our health needs and takes a COVID-19 test prior to visiting us, while also masking in indoor settings.
There are many people with chronic illness, like myself, who cannot safely hike alone. For those without a hiking partner, group hikes may present a good option. Yet, parks rarely hold accessible group hikes, and when they do (or rather, claim to do), immunocompromised people are almost always left out of the accessibility discussion. Masks, COVID testing and vaccinations are no longer required for group activities- even those that are supposed to be accessible. Because of this, many immunocompromised people have been forced into isolation. Why is this? Why aren’t invisible illnesses considered a disability despite how disabling they are? Why isn’t our society doing anything to protect the immunocompromised and physically vulnerable? These are questions to which I do not have the answers; however, I share my story with the hope of raising awareness of the fact that immunocompromised people deserve accommodations too, and encouraging others to reach out to their local parks and ask what accommodations they have in place for immunocompromised people who want to participate in accessible activities. Does the park require masks to be worn during accessible group hikes? Are these hikes planned during off-peak hours so as to minimize crowd exposure? Just as there are activities tailored for wheelchair users, could there be a hike tailored to those who are immunocompromised and are taking many of the same precautions? I plan to reach out to my local park system to inquire about accessibility for those who are immunocompromised, and I want to encourage others in my situation to do the same.
I am grateful to have found a refuge in nature in the midst of my chronic illness. Though it can require a substantial amount of preparation and post-hike care, it has been a source of joy and healing for my mind, body, and soul. I hope that one day hiking, especially hiking in community, can become more accessible for those with chronic illness and disabilities, including those who are immunocompromised.
I would like to thank my dearest friends Eric and Maddie for their unending love and support. I would also like to thank Maddie for helping me write the first part of this piece. Writing about my illness is very important to me for the purpose of raising awareness, but it can also be difficult due to the trauma associated with my chronic illness journey. For this reason, I am grateful for her assistance in helping me write my story.
BIO:
A. M. Rossi is a 20-something who enjoys reading, writing, hiking, doing digital art, and crafting. Due to the extent of her disability and the nature of her illness, she lives primarily in isolation with her husband who has an autoimmune condition. Together, they enjoy listening to audiobooks, watching movies, and discovering new parks and sights around their town.