What The Promise Of COVID Vaccinations Means For People With Chronic Illness

While plenty of people have felt free to flaunt COVID restrictions throughout the pandemic — rationalizing, inaccurately, that if they got sick, it wouldn't be that bad — people with chronic illnesses have had a vastly different experience: many chronic conditions raise your risk of having a severe case of COVID. People with chronic illnesses have been self-isolating, restricting their movements, and taking extra precautions — in many cases, for nearly a year. Now, the COVID vaccine offers a potential salve to worries about getting sick.

“People with any condition that might lower their immune system should get vaccinated in an effort to help their body’s immune system fight COVID-19 if they are exposed,” Dr. Kathleen Jordan, M.D., an infectious disease specialist and senior vice president of health provider Tia, tells Bustle. That includes people receiving chemotherapy, and those with autoimmune diseases, lung conditions like cystic fibrosis, asthma or emphysema, diabetes, kidney dialysis patients, or those with HIV, she says. If people with these conditions contract COVID, they are at higher risk of a severe case.

The Centers for Disease Control & Prevention (CDC) recommended in December that people aged 16-64 with high-risk medical conditions be vaccinated in Phase 1c, the third vaccine rollout stage. In countries like the UK or Australia, people with chronic illnesses have also been placed at the head of the COVID vaccine queue. But the CDC also notes that if you have a weakened immune system, it’s not yet known how your body might react to the Pfizer or Moderna vaccines, as few people with chronic illnesses were part of vaccine safety trials.

The vaccine offers a light at the end of the tunnel, but for people who live with chronic illnesses, the rollout presents complicated questions. Below, five people with chronic conditions tell Bustle how they feel about the promise of the COVID vaccine.

Rebecca, 34, United Kingdom

I have a chronic illness, Ehlers-Danlos Syndrome, [which affects your body's connective tissues]. People assume that that means I'm in a priority group for the vaccine, but I'm not. I'm in no more danger than the average person (less now, actually, as I've already survived a nasty bout of COVID and long COVID). Still, people assume I'm a priority. And what that really says to me is that people fundamentally misunderstand what chronic illness is.

This assumption that "you're chronically ill and therefore must be at risk" is about an inherent idea that people are either entirely sick or entirely well. That illness is a binary, when in fact the reality is that there's a spectrum or even a spider diagram of illness. Either you're sick and need a vaccine immediately, or you're well and don't. But that's not the way it works.

There are those of us who sit wavering in the middle, sometimes really sick, sometimes really pretty well. When I say no, I don't need a vaccine as a priority, people look at me as if this invalidates my earlier honesty about the consequences of my condition, as if this means I'm not as sick as I've claimed. My dislocating joints don't change my relationship with COVID; that doesn't mean they don't affect my life.

Sarah, 35, United States

I've been terrified of COVID because science legitimately doesn't know what would happen if people like me with congenital heart defects caught COVID; the most relevant empirical data has shown that people with acquired heart disease are at increased risk of severe illness; and I would likely be de-prioritized in an ICU shortage situation because of my medical history. So in that sense, qualifying for a vaccine is an incredible relief because now I don't have to find out what would happen if I got COVID.

But the reason I'm eligible for a vaccine has nothing to do with any of that. It's because I'm a speech language pathologist, and have an expensive Master's degree and certification, and work at a school. It doesn't help that I found out I'm eligible for the vaccine at the same time that educators in Massachusetts were bumped from phase 2b to 2c. So most of my coworkers — even the ones with chronic conditions — may have to wait another six weeks to be eligible, even though the state is pushing very, very hard for schools to reopen. It's like I completed a marathon only to turn around and find out that some of my fellow runners were run over by cars.

Penelope, 40, United Kingdom

I cannot wait to get the vaccine. I'm not worried about side effects; whatever they are (if I get any), side effects will be far easier to deal with than getting COVID again. My husband and I are both pretty sure we had it in March or April. I haven't been offered a jab yet, but my husband was called out of the blue by the local hospital, who were ringing local businesses that were still open and offering their leftover shots to anyone that could get there in time. He had two days of feeling a bit sore, having a headache and not sleeping very well following the jab, but he seems fine now. If that's what the side effects look like, I'll take 'em.

I have no idea how long I'll be waiting. But that's OK: aside from walking the dog, I've been more or less under house arrest for nearly a year. A few more weeks or months won't kill me.

Keisha, 33, Australia

I have ulcerative colitis, chronic migraine, and psoriatic arthritis. I am on immunosuppressants for arthritis. They’re amazing and how I can walk. But they’re why I’ve been home for a year.

My whole workplace is back in the office except me. I don’t drive and my commute is an hour and 15 mins each way on public transport. My doctor won’t let me go back until I am vaccinated, which I am very on board with.

I haven’t been given information about the side effects yet because it’s still a bit up in the air about what vaccine everyone will get. There’s certain amounts of Pfizer and certain amounts of AstraZeneca here. Medical practices don’t have arrival dates or logistics information or initial dosage numbers yet. It’s taking a bit longer to start rolling out here, which really is fine; we don’t need it as badly [because Australia has a very low COVID infection rate].

My doctor will only vaccinate with my rheumatologist’s sign off. I trust that between the two of them, they’ll cover me with all the information I need and make sure I won’t have any major interactions.

Bob, 33, United Kingdom

I cannot wait to be vaccinated to have a little peace of mind — but still wary because my partner is way down the priority list as things stand. I also started a new "wonder drug" for my cystic fibrosis back in October, which has indeed worked wonders, but I feel I haven't been able to take full advantage of the benefits yet.

We are doing very strict shielding — I don't go outside at all, and we have not "bubbled" with anybody else. My partner goes outside for a run three times a week. We have all food delivered and "decontaminate" on arrival. I'm not sure how we may ease this up through the progress of each of us being vaccinated two times, but I think I will feel happier to go outside for exercise after my first shot.

I am in category 4 (high priority), so supposedly I will have my first shot before mid-February, but I haven't heard anything yet. Ed will be at the back of the queue as a "healthy" 27-year-old — unless they invent a category for carers/people living with vulnerable people like for ordinary flu jabs (which he gets for free each year on this basis).

Interviews have been edited and condensed for clarity.