Long Covid Invisible, Lonely and Disabling - but There is Hope

Today I was looking at a collection of business cards. Specifically, business cards of people Andrea and I have supported through our Long Covid recovery program. These are all extraordinary people doing important work and supporting their families in many different ways, all while coping with Long Covid. This is particularly interesting because, at least from the outside, none of these people fit the public stereotype of someone impacted by Long Covid.  

Business cards are so ubiquitous, so commonplace. It is strange that this particular collection of cards would cause such strong emotions in me, but they do. I am dyslexic, which means I think in pictures. This has been a great advantage when doing strategic or analytic work as it lets patterns literally jump off the page and come to life - it’s less helpful when it comes to spelling (so forgive typos you spot in our work). It also means that when I work with numbers or objects, I tend to see the people and stories behind them. These business cards, and their stories, were jumping out and highlighting the lonely nature of Long Covid.     

They represent people who are consultants, small business owners, people working in health care and many others. Outwardly they are bold, optimistic, and self assured. As we have gotten to know the people we work with, I can say they are all of those things and more. But alongside of this, each one has been grappling with the private challenge of Long Covid. In many cases the business cards straddle time periods - both the pre-and post COVID times. To the external world the person is unchanged, still showing up, still doing their jobs, still engaged. This is especially true as many people’s patterns changed during the pandemic lock downs and found a new path afterward, so changes are less noticeable than they might have been.     

For me, this shows how resourceful, joyful and resilient people experiencing Long Covid are, despite the challenges they face. It also highlights the fact that Long Covid can be a very lonely condition to face - and that loneliness takes different forms for different people. For some, symptoms like extreme fatigue, brain fog and pain have made it difficult to leave their homes and effectively forced them to withdraw from society - missing work, school, hobbies, time with people they care about. For others, a deep concern about the physical setbacks and long term health impacts that would come with exposure to any further COVID infection has made them cautious about connecting in person with others. For some, it means battling through each day, using all their energy to accomplish what used to be basic tasks and doing this without people around them noticing the struggle.   

The lonely nature of Long Covid is compounded because wider awareness is limited, especially as the public debate has been eager to move on from the pandemic. The images in the press that are available have portrayed the more extreme cases of Long Covid. Given how relatively misunderstood Long Covid is, any effort to help spread understanding is valuable. However, those images have also led many people to initially think that what they were experiencing wasn’t Long Covid because they weren’t “sick enough”. 

Long Covid impacts people in different ways, and with differing levels of severity. This can sometimes mean people with more mild symptoms downplay their own experiences and challenges - explaining them away with phrases like “I’m just getting old” or “I’m just a bit burned out”. Thoughts like this may be reinforced by family and friends, some of whom may find it difficult to fully understand that someone they are close to has been impacted so dramatically by an illness. 

Those impacted by a COVID infection know that the scale of change they have felt in a short time is too drastic to be due to any gradual process like aging, and too persistent to be the result of stress or overwork. However, they may not be aware of the range of Long Covid symptoms or be in a position to connect a range of seemingly disparate symptoms as tied to one underlying issue. There can also be a stigma associated with saying “Long Covid”, especially since it isn’t commonly discussed and can be misunderstood by employers, family and friends.

With limited treatment options, it can also feel like there isn’t much point embracing the Long Covid label. We have already worked with others in a similar situation, and are happy to say you don’t have to live this way. If you think you may be impacted by Long Covid, please know that solutions are available. There are simple evidence-based tools you can use to manage symptoms and reduce the impact they have on your day to day life.

If any of any of these descriptions feel familiar and you are looking for support, you find more information about our 12 week program on Long Covid Symptom Management. You can also contact us directly to learn more.  

Warmly,
Katie