Dealing with Chronic Illness during the COVID-19 Pandemic

Recent graduate and founder and executive director of the Health Advocacy Summit

Immunocompromised. High-Risk. Vulnerable. These are words that I have heard too often in the past couple of months. Growing up with my chronic illness, I never realized that one day, the majority of the world would be put in a position similar to mine. For a large part of my life, I was too sick to go to social gatherings, restaurants, or even school. This time is difficult for everyone, but especially for those with chronic conditions, as this period of instability is met with additional uncontrollable challenges. The COVID-19 pandemic is not about using these words recklessly, but understanding what they mean. We have to understand the difficult tradeoffs and feelings of anxiety that come along with being young, sick, and forgotten.

It is important that we acknowledge that COVID-19 may be hard for everyone, but that it can severely affect us, young people, too. I run a nonprofit, Health Advocacy Summit, which facilitates advocacy events and yearlong programming across the country and internationally for young adults with chronic and rare conditions. Since the pandemic, we have had weekly virtual meetings to support and connect young adults with chronic medical disabilities. From these meetings, it is clear that there is so much anxiety surrounding the pandemic, and that there are unique challenges of being a young adult with a chronic illness during this time.

It is clear that there is so much anxiety surrounding the pandemic, and that there are unique challenges of being a young adult with a chronic illness during this time.

It is even more difficult because at this stage of the pandemic, many states are beginning to reopen. Whether it is premature or not, I cannot say. However, I can say the following.

  1. States may be reopening and most may be going back to a new normal. That is simply not the case for many of us. We are in this hyper-aware state of our surroundings, and we will still need to take extra precautions to avoid exposure.
  2. When schools reopen, many students with chronic conditions may not be able to go back or will feel obligated to choose online school. Many of us may want to go in-person with our peers, but will likely need to choose the alternative option. Accommodations may not translate fully online if students choose a virtual option, for example lab classes or video exams that may make it difficult for students to use the restroom frequently. It may also be more challenging to get individualized attention, something that many may need virtually as opposed to in-person.
  3. Chronic illness does not stop for a pandemic. In addition, those of us with specialized health care needs are struggling to access our healthcare professionals who are on the frontlines for other reasons. Many, including myself, were supposed to get numerous treatments and procedures which have now been delayed for months.
  4. Financial instability is compounded by the fact that much of my community has lost income, which is especially crucial to people with chronic illnesses as healthcare eats up a big portion of income. We may lose our jobs, our insurance, and the opportunity to be independent, something that many of us have fought for.

All of these challenges create a spiral of emotions, frustrations, and uncertainty. It must be said that the chronic illness community is extremely strong, resilient, and persistent (often because we don’t have a choice), but there is no doubt many of us are trying to escape this nightmare. We are more than immunocompromised, high-risk, and vulnerable. We may need to take extra precautions, but we are waiting just as much to have a new normal to end this liminal state.

There are few answers or things that we know for sure during this pandemic. The one sure thing is that there is support for you. I encourage you to share your journey with someone, even if it’s just one person. Please consider looking at resources from The Jed Foundation. There are so many campaigns, such as Seize the Awkward and Press Pause that may be of help to you. Texting “START” to 741-741 may be the first step in seeking help for mental health. It is never too early to do so, and I encourage you to do this now more than ever.

Sneha Dave is the founder and executive director of the Health Advocacy Summit and its program Crohn’s and Colitis Young Adults Network. She serves as an advisor in different capacities with organizations focused on disability inclusion and speaks at numerous conferences about young adult health. She was named the 2020 Paul G. Hearne Emerging Leader by the American Association of People with Disabilities. You can connect with her @snehadave98 on Instagram and Twitter.
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If you or someone you know needs to talk to someone right now, text HOME to 741-741 or call 1-800-273-TALK (8255) for a free confidential conversation with a trained counselor 24/7. 

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If this is a medical emergency or if there is immediate danger of harm, call 911 and explain that you need support for a mental health crisis.