How you can support your loved one with Long Covid, Pt. 2
Ten practical ways to support individuals with Long Covid
Living with Long Covid is a relentless challenge, not just because of the symptoms themselves, but also due to the increasing isolation as most of the world moves on with their head in the sand, disregarding the real consequences of repeat Covid infections. For those of us living with Long Covid, the physical and emotional toll continues to escalate, especially as the discourse around Covid-19 shifts and safety measures, like masking, are politicized. Living with Long Covid used to feel like managing a dumpster fire. Now, it feels as though the dumpster fire is not only still blazing, but it's also submerged under water, making it even more difficult to handle. Meanwhile, it seems the rest of the world is water skiing above, blissfully unaware of the struggles beneath the surface.
If you're looking to genuinely support someone with Long Covid, below are some actionable steps you can take. Throughout the text, you'll find teal colored links directing you to relevant articles, resources and research for further reading on topics that may catch your interest or require more understanding. Also, if you missed it, make sure to review Part 1 of this series for more foundational ways to help.
While this list is only scratching the surface, it touches on some meaningful action items that will make a huge impact. As someone living with Long Covid for over 4.5 years, and spending much of this time in community with others with Long Covid, I believe these suggestions can be far more effective than the well-meaning but vague offers of 'let me know how I can help.’
1. Acknowledge and Address Your Own Fears. The pandemic, in present tense, has forced all of us to confront our vulnerability and mortality in ways we hadn't anticipated. Covid affects us all, healthy or not, young or old, no one has immunity from the affects it has on your body, affects that may not show till years later. Some people are unwilling to accept the realities of repeat infections, choosing ignorance is bliss as a way to deal with things. They tend to deflect, or minimize the effects of Covid as a coping strategy. Those who are unwilling to accept these realities are often the same people who are unwilling to have honest and open friendships with those with Long Covid, as we remind them of the reality they are choosing to ignore. It’s important to reflect on your personal anxieties and fears about health, as it can deepen your empathy and strengthen your relationships with those affected by Long Covid. I know for myself, I fear reinfection could possibly worsen my condition and further disable me. I’ve seen the very real affects severe ME/CFS, or Long Covid can have, as it makes your world devastating small. If you’re not sure what that looks like, I encourage you to watch The Physics Girls’ live stream showing you a day in the life with severe Long Covid and ME/CFS.
2. Practice Active Listening and Empathy. Engage in meaningful conversations about Long Covid by practicing active listening. Go beyond the initial “How are you doing” question. Show empathy and understanding, acknowledging the challenges your loved one faces with responses like, "That sounds really challenging," or "This must be incredibly frustrating for you." Other helpful things to say might be: “I can only imagine how hard it is to deal with such unpredictable symptoms. You're not alone in this.” To offer practical help, give specifics of what you’re able to help with. I really like Joe Glasgow’s idea of saying “Is it helpful if I…” instead of “Let me know if I can help.” Some examples of this would be: “Is it helpful if I run some errands for you?” “Is it helpful if I go to the grocery store for you?” “Is it helpful if I listen to you vent or just keep you company?” Avoid making dismissive comments such as "I thought you'd be better by now," which can be unintentionally hurtful.
3. Extend Invitations for Accessible Socializing. Create safe and inclusive social gatherings that consider the needs of those with Long Covid. Many of us with Long Covid have sensitivities to noise, light, scents and/or sound, so being mindful of the sensory sensitivities can make a huge difference. Opt for outdoor gatherings whenever possible, and ensure all venues are well-ventilated. Consider how far, or close, the meeting location is, as many of us with Long Covid have difficulty driving long distances, and our energy envelope can be quickly drained by the stimulus of simply driving to the meeting place. Offer to pick them up and drive them, or ask them what would help make it safe and accessible for them so they can be included. It’s also work noting, leaving the house may also be too much of an energy drain, so offering to simply come over and visit outside, or something low key might work better. It’s important to include them in your planning process, not simply as an afterthought. Ensure that when you ask for their input, you do not pressure them to decide immediately, as this could unintentionally worsen their symptoms. We want to be involved, and we also want to be safe and avoid any Post Exertional Malaise (PEM) if possible.
4. Practice and Normalize Mask Wearing. Like it or not, Covid rates are very high right now. By wearing a mask, you not only protect yourself and others but also demonstrate that you take the ongoing risks of Covid seriously. I can’t tell you how profound this can be to Covid Informed & Chronically Ill folks to witness. It signals that you are taking the ongoing risks of the virus seriously. It combats the political narrative that only criminals are wearing masks (they’re not). Consistent mask-wearing, especially in public spaces, not only respects everyone's health but also recognizes the potential long-term consequences of each Covid infection. Given that Covid-19 has had a disproportionate impact on communities of color, choosing to wear a mask is also a way to practice anti-racism. It's an expression of solidarity and care, reinforcing the importance of community health and safety in our daily interactions. Personally, as someone with Long Covid, when I see someone I know wearing a mask, it says to me, “Covid doesn’t just affect you, it affects all of us. And I want to make sure to protect us all.”
5. Be Transparent About Your Activities. If you've been traveling or participating in large gatherings, be transparent about your activities before meeting someone with Long Covid, or anyone with a compromised immune system for that matter. Offer to take safety measures such as Covid testing and avoiding large crowds and indoor spaces, if you can, several days prior to meeting them, maybe even a week. It’s important to be flexible about adjusting plans in order to prioritize their health and comfort. When in doubt, simply ask them- what would help make them feel safe?
6. Advocate for Long Covid Awareness and Mask Policies. Mask Bans are discriminatory and a violation of human rights. With the politicization of fascist mask mandates, and cities pushing to make wearing a mask illegal, advocating for sensible, science-based mask policies is crucial. Start right now and use this link to email your representatives within moments, and tell them you oppose mask bans. Support measures that protect everyone, especially the most vulnerable, and engage in advocacy to ensure that public health policies reflect the needs of Long Covid patients and the immune compromised community. Like, or agree, with something your Covid Conscious friend posted on social media? Repost it, and/or amplify their voice, with their permission of course. We need your voice in this fight too! If not for us, do it for yourself. You might be 1 infection away from experiencing Long Covid firsthand.
7. Stay Informed and Share Knowledge. Continue to educate yourself about Long Covid by following current research and updates. Share accurate information within your community to challenge misconceptions and foster a broader understanding of Long Covid. Let your loved one know that you have read the research, or article, etc. Knowing that you’re engaged in the subject and updates can be really powerful and reassuring.
8. Be Flexible and Accommodating. Recognize that the symptoms of Long Covid can fluctuate dramatically. What we are able to do today may not be possible tomorrow. We also don’t know how we’ll feel from one day to the next, or one minute to the next. Be willing to adapt plans and show understanding for last-minute changes, which can significantly reduce stress for those dealing with the disease's unpredictability.
9. Check your ableism & communicate mindfully. What is ableism you ask? It’s prejudice against individuals with disabilities, suggesting normal abilities are superior. Ableist remarks like "But you don't look sick" can marginalize those with invisible illnesses like Long Covid, undermining their struggles. Spoiler Alert! You can’t SEE Long Covid. Ableism, the root of all ism’s, is engrained in our culture so it’s important you are not only aware of it, but mindful when communicating. To help combat ableism and support those with chronic conditions effectively, start by educating yourself about the challenges they face. Practice listening without judgment and validate their experiences to show understanding. Be mindful of your language to avoid minimizing their difficulties, and advocate for accessibility in all environments. Providing empathetic support that acknowledges their reality not only combats ableism but also promotes inclusivity, enhancing support for those with chronic conditions.
10. Provide a safe space for joy and/or laughter. Laughter isn't just good medicine for the soul; it's also a powerful tool for healing, particularly for those living with Long Covid. The challenges of Long Covid often include a dysregulated nervous system and an infected and inflamed Vagus Nerve. Engaging in activities that stimulate the Vagus Nerve can be healing and can help improve Long Covid symptoms. It’s not a cure, but it could make things better. One of these methods, among many, is laughter!
Encouraging moments of joy and laughter can be as simple as sharing a funny story, watching a comedy together, or sharing memes. These light-hearted interactions not only provide a temporary escape from the dumpster fire that is Long Covid, but also contributes to the physiological healing process. By incorporating humor and happiness into your interactions, you can help foster a healing environment that supports both emotional and physical recovery.
As the pandemic continues to be politicized and ignored, and the push against public health measures like masking grows, spaces are becoming less accessible for those with Long Covid. This shift contributes to increasing isolation for many, as fewer people adhere to necessary health precautions. In this environment, where many claim the pandemic is over, those with Long Covid often find themselves having to retreat from social spaces that no longer accommodate their health needs. As time goes on, our friend group lessens, and the need for supportive allies increases.
Being a supportive and compassionate ally in these times is more crucial than ever. Advocating for continued awareness, accessible environments, and appropriate health measures can significantly enhance the quality of life for those affected. Furthermore, fostering a safe and understanding community not only helps alleviate the physical and emotional burdens of Long Covid but also strengthens relationships. The greatest words I’ve heard this year are "I will do whatever it takes to help you feel comfortable," and then following through. That can transform a person's quality of life and sense of belonging and safety.
So, my plea to you, dear reader, is to commit to embracing the role of a compassionate ally. One who not only offers support but actively works to create and expand safe, inclusive spaces. Educate yourself on the nuances of Long Covid, and meet them where they are in their journey. Your actions can ensure that individuals with Long Covid are not left behind but are supported with compassion and respect. By being the empathetic support they need, you become an integral part of their healing journey.
Do you have more recommendations? Leave them in the comments!
Hi Lesa! Thanks so much for writing this, and also pt. 1. Wish I had had this when I was in the throes of it last year, so helpful. I’ve been meaning to write something similar myself, but I might just point to this instead now :)