Health

Forty-Four Signs of Immunotypical Privilege

Every day, as an immunotypical person —

  1. I can touch door handles and other surfaces in public without much concern.

  2. I can go out during flu season without worrying too much about contracting the flu.

  3. I can read about the recent resurgence in measles without feeling alarmed. After all, the measles vaccine is not contraindicated for me, and I know my body has mounted an immune response to the disease.

  4. If I get a slight cough, I don’t have to worry about it turning into bronchitis or pneumonia.

  5. My health status never goes from relatively normal to life-threatening in a matter of hours.

  6. When I take antibiotics, they work quickly and I only need one round.

  7. I haven’t been on antibiotics dozens or even hundreds of times over the course of my life.

  8. I have never been on prophylactic antibiotic therapy. I don’t even know what that is.

  9. I don’t have to routinely take medicines such as prednisone that weaken my bones and put me at greater risk for osteopenia and osteoporosis.

  10. I don’t have to wonder what comorbidity might be lurking just around the corner and if it will be a noninfectious condition, a malignancy, or an autoimmune disorder.

  11. I have never heard the phrase “immune dysregulation” and don’t have to concern myself with what that might mean.

  12. For me, boosting immunity means popping more vitamin C or Airborne. I have no idea what immunoglobulin is or why it’s essential to the human immune system.

  13. When I attempt to eat out, I don’t have to think too much about how long items are left on buffet tables or how well food is washed and prepped by food handlers.

  14. When I am out in public, I don’t have to worry when people cough into their hands or without covering their mouths at all.

  15. I can be sure that, when I go to classes, movies or restaurants, I will find a place to sit in which I am free from issues that exacerbate my breathing problems, such as perfumes, fragrances and cigarette smoke.

  16. I know I won’t have to pass on social activities because they would put my health at risk.

  17. I know family gatherings won’t pose a threat to my health, even if young children are present.

  18. If someone I love is in the hospital, I don’t have to think about when I can visit, how long I can stay, or other health considerations. I can fully focus on that person and his or her health needs.

  19. I can attend school, have a full-time job, raise a family, and engage in recreational activities without also having to manage the many conditions that would affect me if my immune system did not function properly.

  20. I can leave meetings, classes and conversations and not feel excluded, fearful, attacked, isolated, outnumbered, unheard, held at a distance, stereotyped, or feared because of my immune system.

  21. If I pick up a magazine or watch television, I will see images that represent me and my experience of my health.

  22. I never have to speak on behalf of all those who are immunotypical. My thoughts about my immune system can be my own with no need for political alliance relative to my immune function.

  23. My actual and potential contributions to society will not be challenged because of my immune system.

  24. I can go for months without thinking about or being spoken to about my immunotypicality.

  25. I am not identified by my immunotypicality.

  26. I won’t lose friends who can’t relate to what I am going through, who think I am exaggerating about my symptoms, or who just can’t deal with having a friend with my health status.

  27. I know I won’t be discriminated against by employers who neither understand my condition nor have the desire to provide a reasonable accommodation, despite the legal mandate that they do so.

  28. I do not have to be afraid that, when I talk with others about my health, they will suggest unsolicited supplements, dietary approaches or exercise programs.

  29. I will not be told by friends, family, and even uninformed members of the medical community that my condition is really just a psychological problem such as anxiety or depression.

  30. I know nobody looks at me and makes assumptions about why I appear to be ill (or well), or why I am too thin (or too heavy), or why I am not fit (or manage to stay fit despite my illness), or why I do (or do not) eat what I do (or do not) eat.

  31. I don’t have to explain why I have a lingering cough, why I might sometimes need to wear a mask in public, or why situations and settings that are safe for others may not be safe for me.

  32. Because I have never had to wear a mask in public, I have never been asked to leave a public place because the manager or owner of the establishment believes I am putting others at risk, when in fact the mask is to protect me from the pathogens others carry.

  33. I don’t have primary immunodeficiency, so I never encounter people who make the assumption that, despite the condition being genetic, I somehow brought it on myself through my diet or lifestyle.

  34. People aren’t embarrassed to be seen with me because of my health status.

  35. When I talk about my health, I can be certain that friends, family, co-workers and others will not become uncomfortable and change the subject.

  36. My partner doesn’t suffer from undue stress and hardship because he or she is my primary or only caretaker.

  37. Nobody tells me I should feel lucky to have primary immunodeficiency because it means I don’t have to work or accomplish anything during the day.

  38. My doctors have seen a lot of patients who are immunotypical. This means I am not put in the position of having to educate them about my immunotypicality, since they are already familiar with it.

  39. When I present in a health crisis at the emergency room, I am given prompt medical treatment, not told I am merely having a panic attack.

  40. Since I don’t have primary immunodeficiency, I am never called belligerent when an emergency room resident refuses to believe I have the condition and I am forced to insist that I do.

  41. I’ve never had the experience of being misdiagnosed over and over again throughout my life.

  42. I don’t have old misdiagnoses in my medical record that can’t be removed without a great deal of time and effort on my part.

  43. I don’t have to deal with the financial burden of expensive, ongoing medical care and therapy.

  44. I don’t have to face insurance companies that must review coverage for my life-saving therapy before that treatment is approved; that sometimes make patients go off their therapy for months in order for those patients to prove they still have the condition; and that sometimes deny therapy because they don’t feel the patient is ill enough to warrant it, despite documentation to the contrary in the patient’s file.

—

I live with common variable immunodeficiency and wrote this piece for Primary Immunodeficiency Awareness Month. It takes as its jumping off point Peggy McIntosh’s 1993 essay “White Privilege: Unpacking the Invisible Knapsack.”

To Sleep, Perchance to Dream

Yesterday Jon and I stood on a pier at Juanita Beach Park for a long, long time, waiting for the beavers to return to their den. We’d seen one of them bobbing along the far edge of the water, its wet furry head above, then below, then above, then below the surface. With only the head intermittently in sight, I had to imagine the rest of the creature, its chunky body and short legs, I supposed, paddling awkwardly beneath.

Sometimes the head would come up under a lily pad, which would become an impromptu hat for a foot or two before the plant’s tether would pull the leaf away and the wet furry head would again be revealed.

This is how night should come, I thought.

Jon asked if I was ready to leave yet. He becomes impatient with nature just as nature is about to reveal something to or about him. He likes to move briskly through landscapes because that keeps him in his safe, usual thoughts. Stopping poses a risk because that is when nature can change a person.

But stopping is important. We need to allow ourselves to let nature have a say in how we think about and move through the world. Just ask William Stafford, who urges us to let your whole self drift down like a breath and learn / its way down through the trees … Stand here till all that / you were can wander away and come back slowly, / carrying a strange new flavor into your life.

The beaver was nowhere in sight but we located a mother duck with six ducklings beneath her. She looked like an upside-down Easter basket with all its goodies underneath. She had found a nice spot to camp out for the night and was drifting in and out of sleep, opening her eyes whenever the grass moved, a small bird came near, or a firecracker was set off. I wondered then to what degree wildlife across the United States collectively worries on the Fourth of July. It must sound like the end of the world. Or hunting season.

Jon asked several more times if I was ready. “You ready yet, Bud? Ready now?”

This is how night should come, I thought again. It should come slowly over the trees, above the grasses. It should settle on the water just like this. It should guide the beavers gently and slowly through the water until they find themselves at the worn pathway leading to their den, where they pull themselves onto the mud and wriggle across decaying, tamped foliage, making the final turn into their home and out of our sight.

Yes, it should come just like this.

Last night is the first time in weeks I have not felt anxious and panicky as soon as the sun goes down. Since my test results, I have been so worried about what the diagnosis will be, what comes next and how my life could be severely altered or truncated. As soon as the light begins to fade, my heart rate and blood pressure have begun to rise. I have spent every night in a body that hums with fear. Fear has become its own composition with no end, no rests, no shifts in pitch or volume. Just its continual drone, its dissonant multi-tonal vibration.

But last night, night seemed natural. I was not afraid. I did not kick and scream my way into sleep or try to fight my way out of it once I was there. Last night I was a beaver. I was grass. I was water. I was that whole gloppy corner of the world taking up the darkness and whispering, Yes, yes.