Cross-posting this piece that I wrote for Primary Immunodeficiency Awareness Month. It’s called 44 Signs of Immunotypical Privilege. It takes as its jumping off point Peggy McIntosh’s list about white privilege. I invite others to add their own items in the comments section. If enough people participate, I will share the community-generated list on my website. I wont share any identifying information, just the items themselves. :: 44 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 immunoglobuwhatever 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 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.
Posted on: Mon, 07 Apr 2014 21:45:36 +0000