This has been a particularly difficult week for me, with the spread of COVID-19 triggering other issues I have had trouble processing. I have actually started to improve with my M.E. symptoms and was feeling optimistic that maybe I could progress to being a mild case again, rather than being mostly housebound with moderate M.E. The bad part is that this little bit of increased energy seems like it has only opened up space for me to feel the anger and resentment I hadn’t had the energy to feel for months while I was focused on recovery. The coronavirus is also triggering a lot of anxieties and fears for me. Seeing healthy people minimize and joke about the threat of coronavirus is infuriating. They think that their only risk is a cough for a few days. We know better and they just won’t listen or don’t care. All week I have seen people saying things like, “it ONLY affects the elderly and those with other conditions,” as if we don’t matter and are disposable. They don’t seem to care that they could spread illness to us and the effects could be disastrous. They don’t realize what a privilege health is and it is so infuriating. I want to make them listen and I want to make them care, but I need to realize that it’s out of my control.
Here are some reasons why the reactions of healthy people to Coronavirus are so infuriating.
Some of y’all never had to advocate for work or school accommodations in order to protect your health and it shows.
I lost my career due to my illness. I masked my symptoms for years while they were mild. When it started progressing rapidly last May and other comorbid illness began to appear, like POTS, I requested accommodations like working from home and was denied. I was told that was not a “reasonable accommodation,” and continued pushing through my worsening symptoms until I had to take disability leave at the end of July. I’ve been unable to work since. I asked if I could work from home during that time and was told no because I didn’t have a VPN. When they finally agreed to let me do some work from home in November, I only got up to about 15 hours in a week. I think this was just to cover their ass so they could say they did offer an accommodation and I still couldn’t manage the number of hours. I was told that since my FMLA was up and I was unable to return to 40+ hours in the office, that they would have to rehire my position. At that point, I gave up trying to work. It was more important to me to focus on my health and my treatment plans. I had just started seeing a doctor at Johns Hopkins after waiting for months and wanted to focus my energy there, not on trying to work. I don’t regret that decision at all. However, it is very hurtful and enraging to see my employer now immediately make accommodations for staff to work remotely, without VPNs, is infuriating. The excuse for my position was always that I had to be able to answer the phones. If they really wanted to, I’m sure I could forward calls to my cell phone, but that wasn’t an accommodation they wanted to make. In today’s culture, we rely mostly on electronic communication as well, but that office was always resistant to change. I remember how I tried to get them to use slack for months and I’m wondering what they’re doing now and thinking how much easier this period would be for them if they had listened to me and adapted before!
I lost my career and worsened my health by continuing to push through and I see people posting online with their “work partner” pets and kids, while I have been unable to work, homebound for months, and at times completely bedbound. It is incredibly insensitive. On the other side is that people are treating this like it’s a vacation and not taking it seriously. I saw a post that said, “brb cancelling life #housebound” and I know it wasn’t a personal attack on me, but damn it felt like it. Also, don’t use #housebound if you aren’t actually housebound. People like me use it to connect with other people online who share our experience and it is so necessary when we are socially isolated all year round, not just during quarantine. Let us have our space please. We still need to talk to each other in a safe place, with other people who understand what we’re going through and have the same issues we do. We can’t just go to the grocery store right now if we need something and our usual avenues of delivery are swamped by abled people right now and inaccessible to us.
I wanted to work from home, so that I COULD WORK. That may have been the only way I could have kept my job, but I didn’t get a chance to try. Now, people are working from home, but still going out to bars and socializing and not taking any other steps to limit the spread of this virus.
I am so glad that these precautions are being taken and companies that can allow work from home are doing so in order to limit the spread and protect the health of the general population. You have disabled activists to thank for that. But I resent the fact that I asked over and over again for these accommodations and was denied, resulting in the end of my career. It didn’t need to happen that way. I didn’t want to work from home so that I could slack off or relax. I wanted to work from home so that I could WORK. Now I can’t work at all. That’s what I feared and exactly what happened. I feel like I was taken advantage of, so thoroughly and completely and without care. I was a cog in their machine and I wasn’t even worth enough to them to try to perform maintenance – it was easier to just replace me with someone new. I had such an emotional bond with the place that I worked, that started when I was 8 years old, and it was not reciprocated at all and that really really hurts. Accommodations are considered “special treatment” right up until able-bodied people need them, as disability activist Imani Barbarin says. They always COULD have made these accommodations, they just didn’t want to. So many people with disabilities or chronic or mental illnesses have been denied workplace or school accommodations that have now been easily and quickly implemented and it’s hard not to resent that. To see people not taking those accommodations seriously is a slap in the face.
Some of y’all never had to cancel plans because of your health and it shows.
I get it, I really do. The anticipation and excitement of a trip or an event and then the letdown of cancelling it without being able to postpone. I feel this on multiple levels right now and I don’t even have it that bad so healthy people, get some perspective please. I love Maryland Basketball. I have season tickets and it’s one of the very few social things that is worth the payback crash. I don’t go to every game, but I go to them when I can (meaning when I have two days open after to recover because I will be crashed and bedbound after.) I’m sad that I don’t get to see them play in the tournaments. I’m sad for senior point guard Anthony Cowan Jr. who has been an unsung hero his entire career and won’t get to play in his final conference and NCAA tournament.
I booked a trip to London, Paris & Brussels with my parents and my husband before my symptoms progressed to moderate M.E. I had been debating postponing it, but since I got a wheelchair and had started to feel better, I was excited to go and wanted to see how I would do and adjust to living my life with my current level of symptoms. I’m ok with my illness now. It may be restrictive or limiting, but I am now feeling some semblance of freedom and a return to normalcy that my wheelchair has afforded me. I was supposed to leave Sunday, March 15 and I would have been there now. I cried cancelling all of these plans. I have been fighting with companies for days trying to be given exceptions to postpone my trip or be refunded. I was diagnosed with hypogammaglobulinemia (low IgG) on March 11 and my doctor told me I was not allowed to travel due to being immunocompromised and at high risk of infection, so I canceled everything on Thursday and Friday, before many companies had new plans and policies in place. Right now, I have only been refunded $900 of the $5900 spent, but two companies said they will be issuing vouchers. Even if I am out the money, I cannot risk my health and the health of others by traveling during this time.
On top of the fear and anxiety of the virus, there’s all of these cancelled plans and isolation. It sucks. I’m sad. But you know what’s devastating? The rest of my life plans that have been cancelled and postponed because of my illness. My career – cancelled. My plans to start a family – indefinitely postponed. I’m sad about my trip and I’m sad about March Madness, but I grieve my career, my loss of health, and my derailed life where I’m unable to have any plans because of my uncertain and unpredictable health.
PLEASE cancel your St. Patrick’s Day plans, social plans, vacation plans, and any other plans that are not essential right now. They can be postponed and are not worth the risk. Disabled and chronically ill people are excluded from those kinds of things year-round – you can do it for a few weeks.
Some of y’all never lost trust in the healthcare system due to mistreatment and it shows.
To believe that you can go to the doctor and receive care is such a privilege. My experience has not been that way. I have tried so many times to get treatment for illnesses and I’ve been disbelieved and denied care. It took me two years to be diagnosed with hashimoto’s and hypothyroidism when I had clear symptoms, a family history and abnormal blood test results. It took me three doctors and three months to be diagnosed with a fractured ankle, while I kept walking on it, thinking I should push through and it would heal. It took me more than 10 years to be diagnosed with endometriosis. It took me nine years to be diagnosed with ME/CFS. I have had to fight and advocate for myself for years and years and years and it’s so hard and I’m so tired of it. I don’t trust our medical system to be able to help me if I were to get sick with this virus. There is no treatment for M.E. They would have no idea how my chronic illnesses would make this virus present differently in me than a typical patient and I don’t trust them to figure it out. I don’t trust doctors to provide the care I would need if I were to contract this virus – my life is at stake here. Other people with M.E. have become bedbound after a viral illness and I’m not willing to take that risk. Black women are routinely disbelieved and denied basic medical treatment like painkillers. How will that affect the treatment they receive if they go in with symptoms of the virus? These are valid fears and it is so frustrating to see healthy people minimize these fears because their privilege has saved them from these experiences.
I have had access to healthcare, but many people will not be able to access the care they need during this crisis. Healthy people are putting people at risk by exposing themselves. The biggest risk we have right now is the potential strain on the healthcare system and everyone should be doing everything they can to avoid coming into contact with this virus – especially if you are healthy. Make space for those who aren’t.
Some of y’all never had to think about the effects of your actions on someone who isn’t healthy and it shows.
I am so angry seeing people joke about this and not take social distancing and recommendations to cancel events and schools seriously. You may be healthy now, but you can be a vector to spread this illness to someone who isn’t. I am immunocompromised. I’m on the privileged end of the spectrum, with a husband who can telework and keep his stable income. Many people aren’t able to work from home or will lose their income now. Some people have to continue going to work while other healthy people aren’t taking precautions and could spread it to an immunocompromised family member. Public health includes ALL of us. You’re not just taking these precautions for yourself, you’re doing it for all of us. I am disgusted that people have to be convinced that we matter and they should take precautions for us.
I am also afraid of the impacts on those with mental health conditions. For someone with a compulsion towards hand washing who sees the news coverage of people continuously sanitizing or if they see the other side of someone disregarding those hygiene recommendations. My anxiety is heightened seeing people online disregarding social distancing and hygiene recommendations but they don’t think about the impact of their actions on others. I saw a video of friends celebrating a birthday and blowing out candles on a cake and I nearly had a panic attack. My husband helped me ground myself with breathing techniques and was able to calm down. I can’t control what they are going to do, but I can control what I am doing. With everything going on, I cannot believe that someone wouldn’t at least cut their piece of cake first, and then blow the candles out. They really all ate cake that two people blew all over. You might as well have just had a party where you all cough directly into each other’s mouths.
It is horrifying to see that the governor in my state issued a state of emergency, closed schools and recommended that people stay home as much as they can, but then my social media feed was full of people out at bars, taking photos pressed cheek-to-cheek. I don’t understand. I guess it’s selfishness, but it’s also just plain stupid because you are putting yourself at risk too.
Some of y’all never had disastrous effects on your health from “just the flu” and it shows.
This one is really getting to me – All of the people minimizing the impact this virus could have because it’s “just the flu.” I contracted H1N1 and was never healthy again. I don’t know if it unmasked pre existing conditions or if it triggered them, because we don’t have adequate scientific research. We know there is a link between viruses and M.E. but not a definitive relationship. My autoimmune conditions surfaced following that flu. My M.E. presented after that flu. I was healthy and thought I was invincible. I was in college and went to class with a 102 fever. Then I went to the health center and they were shocked when I said I just came from class. I am a machine and a master at powering through, but I never recovered from that virus. I never woke up feeling rested again. I was very high-functioning before, but I had to adjust to a new energy level. My 3.8 GPA dropped to a 3.0 (oh no! lol) and the next semester I had to quit my part-time job and I couldn’t return to my internship in order to focus on finishing school, but I was able to manage well with mild symptoms of M.E. and continued undiagnosed for years. To reiterate my point – I was misdiagnosed three times when I had a fractured tibia and two torn ligaments in my ankle because I kept walking on it and powering through – I am a machine, but I am unwilling to risk the effects this virus could have on my body. This virus could kill me. It could leave me bedbound and unable to speak for the rest of my life. Nothing is worth that risk. I have been working nonstop for the past 8 months on nothing but seeing specialists and trying new treatments in order to manage my chronic illness symptoms – I am not willing to take any risk that may derail that progress.
If you are healthy now, this virus could leave you disabled like me. If you are healthy now but are genetically susceptible to some kind of condition, this virus could unmask that and you may never be the same. I am getting so angry seeing people going out and doing things and ignoring warnings and saying things like, coronavirus can’t stop me! Hey, guess what. It can. Maybe you’re lucky and it won’t… but it can. People think that their immune system is strong and will protect them. A likely cause of my complications is an overactive immune system that went into has been overcompensating for years. Now, it has progressed so that I have hypogammaglobulinemia (low IgG), meaning my body is low on the antibody that protects against bacterial and viral infections, making me highly susceptible to coronavirus. This virus could set off the same reaction for other healthy people. I don’t want anyone to have to go through what I have with M.E. It’s a terrible illness. This week has shown me that I care about people more than they care about themselves and a hell of a lot more than they care about us.
Ignoring advice from the CDC and WHO and state governors does not make you strong, it makes you stupid and irresponsible. You may never see the effect your decision had on others, but you are putting lives at risk. Disabled people are excluded from bars and restaurants all the time because of inaccessibility. Chronic illness patients are excluded from social activities all the time because of symptoms. And you couldn’t take two weeks to protect us and protect yourself? It’s heart-breaking. I am fighting harder for your health and for your life than you are! I realize this sounds self-righteous, but if one good thing comes out of this, maybe people with privilege will finally listen to marginalized groups about our experiences – without risking learning from experience. I’ll talk more about this in the next section.
Some of y’all never lost trust in the government to protect you and care for you and it shows.
There is just so much for me to unpack here. The current administration is handling this so poorly. I’m thankful that the governor in my state and many others stepped up and issued guidelines to protect us by closing schools and cancelling events. It’s amazing to me that the NBA had to be the catalyst to protect our country. The only other time I can remember an entire league cancelling games is after 9/11/01. Now we have the NBA, NHL and NCAA cancelling events. This is serious. The CDC and the NIH have neglected my illness for decades. I hope they don’t do the same if there are people who remain ill after contracting this virus. Activist groups for M.E. have been given so many bullshit excuses about why funding can’t be made available for research, so I was not trusting that these agencies would immediately be able to fund research to develop testing and treatment for COVID-19. Couple that with a senate that refuses to hear any legislation and an executive branch that only cares about the stock market and I am just so full of fear. I am honestly shocked, appalled and disgusted to see that people are still trusting the president and any word he says. I don’t want to hear from anyone who continues to support this president and I don’t care about their reasons why. It is inexcusable to continue to support that man when he shows over and over again that he does not care about people and only cares about money and power for the elite. I don’t want to explain to them why I don’t and I don’t think we should have to continue to explain to them why our lives matter.
I know I still have so much privilege here. So much that what I’m saying here can’t possibly encompass everything I should. I am a white woman who is relatively financially secure, thanks to my husband. Marginalized groups have been telling us this for years – that the government has left them behind and doesn’t do anything to protect them and it will harm us all. Groups like #BlackLivesMatter have made so much progress towards equity, but this is quickly proving what they have said all along. The intersection of race and illness is so important as well. Due to environmental racism, many black Americans are immunocompromised and could be impacted more by this virus. People with privilege have always refused to listen to marginalized groups about how they have been mistreated and this pandemic is another example of that. Marginalized groups will bear the biggest impact from this pandemic and healthy privileged people are going about their normal lives without a care of the impact they may have on others. How many times do they have to beg you to care about them? The ironic thing is, people with privilege may have ignored black people, indigenous people, LGBTQ people and other marginalized groups – but by ignoring disabled and chronically ill people in this instance – you may become one of us and then you’ll finally see what you’ve been willfully ignoring all these years. And to be honest – we don’t want you to have to experience it yourself to join the fight, we just want allies who believe us and fight for us.
My hope is that this is exposing the lies and the corruption. The accommodations that were not feasible for disabled people – they are feasible when everyone’s health is at risk. The money that has never been available for medicare for all, universal child care, and other policies – $1.5 trillion was magically available for Wall Street. Homeless families in L.A. are occupying vacant homes owned by the state in order to self-quarantine. State officials are working with hotels to provide housing for homeless people during this crisis. The Republican governor of my state called the president out today and maybe his party will finally hold him accountable. This has the potential to bring about major changes that we’ve been told were not feasible for decades and that gives me hope.
Some of y’all have never been minimized, ignored, and gaslit and it shows.
This one is really hard for me. It comes from all angles. I do it to myself, doctors do it, employers and colleagues do it, family and friends do it, people on social media do it. I am so fucking sick of the minimization, the ignorance, and the gaslighting. We have seen examples of how to quickly and effectively contain and treat this virus, yet our government officials ignored it. We see healthcare workers and people struggling in other countries and people in America are minimizing their suffering. The gaslighting is already starting with people saying, “if this turns out to be not as big of a deal, we will know the media is lying.” NO, we will know that containment worked. Now, some people are seeing what we disabled and chronically ill people and other marginalized groups have known for a long time. They’re seeing how it feels when you can only rely on like-minded individuals because the privileged group will keep shouting that you’re wrong and making things up, despite the facts right in front of your faces. Friends are telling me their coworkers are mocking them for wanting to telework. People are ignoring guidelines and continuing to shake hands and touch everything without sanitizing. People are going to bars and posting photos with their faces touching. Those same people are saying we’re overreacting. How can I possibly be overreacting when there are people that are doing literally nothing to help limit this? People are deliberately disregarding everything they could do to help, so I think we are not reacting strongly enough to drill this into their minds.
The virus is already killing people in the U.S. and people are mocking us for taking it seriously and trying to slow the spread. I am having a very hard time balancing what I feel is my responsibility to be informed and inform others with my anxiety over what is happening. This virus should not be minimized or ignored. Your anxiety or trauma resulting from it will not be minimized or ignored. We will not allow the misinformation and gaslighting to spread. This is a public health crisis and the only way we can go through it is together, by taking care of ourselves and taking care of each other as best we can. Do what you need to do to self-soothe, to stay grounded, to maintain some control over what you can control.
It is just totally dehumanizing to see people continuing to say “it only affects the elderly” and “it only affects those with compromised immune systems” as if we are disposable and don’t matter. We can hear you. We see you. You all are really exposing yourselves here and showing who you truly are. We do matter. We are not disposable. You should be doing whatever you can to protect us. We shouldn’t have to be begging you to do this for us. You should do it because you would also be protecting yourself. The ironic thing is, this time, by ignoring the marginalized group, the privileged people could join it. Healthy people could get sick and die. Healthy people could get sick and never recover. We’re fighting for them too. Even when some of them won’t support us right now or ever.
One more thing I want to say in closing because I’m having to continuously remind myself of this. Even when I see people posting online, blatantly disregarding social distancing and hygiene recommendations, I do not hope that they come into contact with this virus and develop symptoms. If they do, it isn’t their fault. Illness is never our fault, it’s just something that happens to us. I have to continually remind myself of this when I place blame on myself. I blame myself for not listening to my body, for pushing through my symptoms, for making myself more ill. It was never my fault, and will never be my fault, that I got sick. No individual is to blame for contracting coronavirus and we still must do what we can to take care of ourselves and take care of each other (from a distance) during this pandemic and as we move forward. I am doing whatever I can to prevent myself from contracting this virus and I feel good about my efforts to do so. I am scared for all of the people that could get it and could stay sick from it, but we’ll be here to support you when you join us. I hope that most people won’t be joining us in the sick kids club, but please support us and listen to us – we need it.
- CDC Guidelines for COVID-19
- CDC: If you are higher risk
- Washington Post: Coronavirus coverage
- Subscribe to daily coronavirus updates from the Washington Post, free of charge
- NPR: Coronavirus coverage
- Johns Hopkins University Coronavirus Resource Center
- Directory of Local Health Departments
- Nine charts that explain the coronavirus pandemic
- How cancelled events and self-quarantines save lives
- #MEAction COVID-19 Resources for people with M.E.
Some things I’ve done to ease my anxiety about all of this!
- Talked to my therapist (who switched to having all sessions online!)
- Made a list of places I’ve been that took my breath away and made me feel at peace
- The Grand Canyon
- Kauai, Hawaii – seeing the stars at night from Waimea Canyon State Park
- The sunset in Naxos, Greece
- Sitting on the roof of a hotel in Athens and seeing the Acropolis in the distance
- Secluded at the dog beach with my pup on a sunny day
- Ate cookies and milk
- Practiced meditation (I love the headspace app)
- Grounded myself with my breathing
- Played words with friends with other people with M.E. that I met on twitter
- Talked to healthy friends and family about why social distancing is important
- Wrote this post to get my anger and frustration out
- Watched the Office
- Watched the Good Place
- Pet my cats
- Snuggled with my dog
- Sat outside on my deck
- Washed and changed the sheets on my bed
- Disinfected the doorknobs around my house
- Tidied up the living room
- Lit a relaxing vanilla candle
- Took an epsom salt bath
- Put on fun, bright-colored clothes to lift my mood
- Made this list 🙂