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I Never Expected People to Turn on Me for Being Immune-Compromised

I was born without a whole immune system. I never expected anyone to turn on me for it.

Like many patients born with a primary immune deficiency disease, my road to diagnosis and proper treatment was long and included many bouts of pneumonia and other serious infections before I finally was able to get the right care. As a result of my struggles, once diagnosed and treated I have fought tirelessly for many years to raise awareness of immune diseases to make the path easier for other patients. As a weekly recipient of a blood product called immune globulin, I am featured in some ads and I am on a fleet of blood donation trucks. I’ve been on TV, in magazines, and in other ads for medical supplies for patients with my condition. I’ve been outspoken and have always been forthcoming with everyone about my condition and with information about how the immune system works and infectious diseases. I’ve been involved in my community in many other ways including advocating for coastal protections and other local and national issues. I felt valued and respected. Then came the public reaction to COVID-19.

The first sign of trouble was when our initial public messaging about COVID-19 was perceived by some as telling healthy and young Americans that they did not need to worry. Only those with pre-existing conditions and the elderly needed to be especially concerned about the novel SARS-COV-2 virus was the overwhelming message many internalized. A few faults with this messaging, the way it was received, is that no infectious disease can be controlled only by society’s most vulnerable taking precautions. In general, infections are spread primarily by people most active with other people. That’s not usually elderly or the most medically vulnerable.

Another issue is I knew already that these statements weren’t exactly the whole picture. Were the deceased health care professionals we had heard about in China all elderly or with co-morbidities? I think not. The level of exposure obviously plays a role. Everyone needs to be careful. Despite its flaws, this line of messaging unfortunately persisted and was misinterpreted, and it helped bring out the ableist, ignorant, and selfish attitudes of many.

I saw Facebook friends say things like, “Don’t worry, only immune-compromised people will die from COVID.” I was verbally attacked by family members for following medical advice in a pandemic when my body does not make enough antibodies needed to fight infection. I was told I was destroying not only my family by avoiding infection, but also the country! I guess true patriots spread disease during a global pandemic? And good family members are willing to possibly throw away their futures to die a horrible death on a ventilator or end up with additional health problems to avoid making others uncomfortable by wearing a mask and avoiding unnecessary exposures?

Needless to say, I quickly realized that I was not safe. Even some people who were supposedly close to me had no intentions of following any guidelines for COVID prevention or making any attempt to keep me or any high-risk individuals safe. Some would go on to be superspreaders more than once. People came up with one horrible idea after another. Letting the infection rip through humanity full force was suggested by more than a few early on who obviously did not comprehend the impact that would have. I saw protestors against shutdowns holding signs saying to re-open and sacrifice the weak. Glenn Beck suggested grandparents sacrifice themselves to save the economy.

Some people sure seemed very willing to kill off people with conditions to avoid altering their daily lives. The death and illness of older people and those with health conditions are downplayed, even sometimes by experts and leaders we are supposed to be able to look up to and trust. There is something fundamentally wrong with how some people think and behave towards people with disabilities. Not everyone with a medical condition is “on their way out anyway” or has a life that is less meaningful or important than someone without a condition. Selfishness has somehow replaced respecting and caring about the needs of others.

Disinformation has been rampant, especially since the vaccines. We have a percentage of people who are consuming propaganda and who are terribly brainwashed and acting against the interest of public health and our nation. Ideas are being put out there that are incompatible not only with my survival, but also with us gaining the upper hand on the pandemic. Being responsible, taking precautions, and working together was the fastest and easier road to take out of the pandemic, but sadly not enough Americans chose the path of least destruction. They went instead for maximum illness and misery.

So where did all these horrendous attitudes and bad ideas come from? The pandemic I feel brought to light an ugliness that I think was always right there below the surface. It’s never been easy to have a disability and an immune disease, in particular, is especially difficult. For one thing, most healthy people know very little about their immune systems and there are so many misconceptions. Once someone has been exposed to false information, it can be very hard to change their minds. It’s also what I call a hard empathy situation. Most people have never had an immune disease, so to picture themselves struggling to fight an infection that can lead to organ damage or death is a huge stretch for those low in the empathy department. Tell them your back hurts or you have a more common ailment and they will have an easier time feeling the fact that you are struggling.

I also think healthy people think that they are better. Superior. Too tough to worry about a virus so small you can’t see it. The actual truth is that it is adversity in life, struggles that make us strong, intelligent, and resilient people. A perfectly healthy or easy life is not a recipe for character development. To be honest, ignorance seems to be an as great or greater disability in this pandemic than are many physical ailments. To be able to stay strong, stay properly informed, and to be able to follow precautions gives you a ton of advantages in a pandemic or disaster. The political divisions, lack of trust, and lack of media and medical literacy have rendered so many easy prey to conspiracy theories and anti-vaccination disinformation. This does not make our country strong when facing an invisible enemy.

As I stand now, I am just weeks away from getting COVID antibodies in my weekly infusions, and I will hopefully be much safer. I told family, friends, and whoever would listen from the start that I would have to be very careful until science caught up with this virus. I had discussions going back decades ago with my former infectious disease specialist about why I could be at risk and not protected by my infusions or probably vaccines if a novel virus were to happen. I have stayed calm, have tried to share facts, hope, and patience, but too many were too worked up to accept it or to take it in. It’s a shame because this was a moment for the world to learn from us. Patients like me have so much to offer if only we had been shown more respect and consideration. Instead, doctors and specialists faced threats, so acknowledging the unique skills and perspectives of disabled patients completely went out the window. Many it seems would prefer to give airtime to people who have no clue about what they are talking about.

I have watched the mental health, integrity, and compassion of many around me completely crumble. If people can’t trust and listen to experts, we are doomed. If fellow human beings don’t recognize that the life of someone fighting a condition is just as precious as any other life, we have failed to teach respect or human decency. And I want to mention here that I am not talking about everyone. My husband has done his best to keep me safe. I lost my mom during the pandemic, but she was my greatest ally and never would have endangered me. Many friends, family, and neighbors have been there for me and have gone out of their way to help me feel included and safe during this time. Still, I never expected anyone to turn on me for my condition and all I have learned because of it. Surviving this far has come at the price of knowing how little some people actually care and seeing how easily they can be manipulated into dangerous actions and inactions.

I don’t know how or when the pandemic will end but I know it will. I have earned 32 at-home course certificates so far, have read many books, have taken up arts and crafts, have maintained my fitness level at home, and am trying to get more organized. I have done my best to use this time of increased isolation to better myself. So long as I am here and still doing well, I plan to continue to raise awareness of both immune diseases and disability rights. We also all need to process all that has happened and learn from this pandemic, so that the next time we face a threat, we will be better prepared. We need to continue to share our truth and hope one day the world is ready to hear it.

Getty image by Justin Paget.

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