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Posted on 23. May 2013

Vulnerability and the Zombie Apocalypse

By Alyssa Rosengard

Picture a zombie apocalypse: you and your loved ones running away from mass terror, afraid of contracting a terrible virus. This fictional horror can be compared with dealing with a primary immune disorder. For patients, the fear is not based on some scary movie, but on the daily reality of being exposed to infection, illness and possible mortality. Case in point: While in a department store, a woman coughs near me, not bothering to cover her mouth. A nearby fellow shopper is irritated by the impoliteness. To me, it translates into possible months of illness, doctor appointments, antibiotics and pain. 

For most of my life, I have been a type-B personality, laid back and artistically disordered. Since developing common variable immune deficiency (CVID), I have had to force myself to transition into a type A in order to survive. I now use Antibac every time I come home from shopping. During this last flu season, I wore a mask and gloves in public - humiliating but necessary. I continually spray my door knobs, light switches and bathroom faucets with Lysol. This, coming from a girl who used to eat with oil paints spotted over her hands. 

Those with CVID understand it is a disorder of isolation. It keeps us from going to parties, visiting family or simply following through with plans. It is also an illness that keeps us from leaving the house when we are ill. Unfortunately, that means we look "normal" when we do choose to socialize. How many times have I heard "Well, you do not look sick…"? No kidding! I don't go out when I am sick, and you may not have seen me for months, or maybe I am just a wonderful actress. The symptoms of this illness are uncomfortable and sometimes embarrassing, making it nearly impossible for me to deal with, let alone share with others.

But, CVID has also given me a gift. I am not one of those people who needs to see the life lesson in every situation. But the unexpected gift I've received from chronic illness is the ability to sit with myself. Many people do not feel comfortable without continuous motion - texting, cleaning, exercising, watching TV, surfing the net, talking on the cell phone, etc. This illness has forced me to know who I am as a person on the face of this earth, to review and reevaluate my goals. I am happy being by myself. When I was a career woman, I had to plan every waking moment, never leaving anything to chance. I now paint, knit or just sit and rest and really enjoy my own company. I never thought that I could get my head to stop racing or that I would be grateful for just waking up every day. My skill as a painter has progressed as well, and I have reached out to other people with immune deficiencies and learned to be more empathetic and a better listener. I understand now that I am not an expert in all subjects and that I need to be humble and ask for help. I also know how to stand up for myself, and not let anyone, including the medical system, dictate my life.

So, yes, CVID has limited my life in many ways, sometimes making me feel as vulnerable as the leading character in a zombie apocalypse film. But, it has not conquered my spirit. If anything, I have grown into a stronger, more confident and more empathetic woman. I look forward to growing and changing; the possibilities are endless.

How has your chronic illness challenged you to change and grow?


Comments (6) -

6:32 AM on Friday, May 24, 2013

well said, its exactly how i feel/felt when i was first diagnosed last year.  i'm still working on the transition from active to more sedentary one, but i'm working on it!
thank for sharing ~

Linda Thornrose
12:10 PM on Friday, May 24, 2013

Well said, indeed!  I have been dealing with CVID for ten years and truly relate to everything you said.  I have to say I have relaxed a little regarding the 'germ-a-phobe' feeling, but I am still careful.  I have to admit, I still feel pressured when people say "you don't look sick" and we sure miss seeing you at church, etc., but I have gotten better.  My husband teases me now and calls me a 'heathen', in jest of course.  He is so patient for the most part, but he can sure get frustrated when it is out of his hands to do anything to make me better.  Bless his heart, he is a good man and I am grateful.  I also have my 83 yr old mother living with me the past five plus years who suffers from dementia to care for, so my days are full.  At least, once I had to retire from work six years ago, I do have a lot more choices about getting rest and staying home when I need to.  The IVIG works pretty well, though not without side effects.  I also suffer from fibromyalgia and chronic fatigure syndrome, another 'invisible' disease and it often conflicts with the treatments for CVID.  However, after ten years, I have a pretty good routine.  Most importantly, I am so grateful to have this Blog to enjoy and learn from others who share the same health problems...it is encouraging and very helpful.  So, thank you, Alyssa, for taking the time to share.  God bless you and keep you in the peace you seem to have attained, and keep you from those 'zombie' germs!! Smile

3:17 PM on Friday, May 24, 2013

Thank you for this post. I sent it to my family because I can never seem to explain to them exactly what you just wrote. I hope they all read it and we can have an open discussion about the changes in me due to CVID, and heal some wounds and all have a better understanding of each other.

4:23 PM on Saturday, May 25, 2013

Yes, we all can relate. Recently, my 91-year-old father was hospitalized, for the first time in his life, with pneumonia and flu. I really wanted to visit him but knew that would be foolish. He knows I have an immune disorder, but I'm sure he doesn't fully understand it. He didn't complain that I didn't visit him, but I felt so bad.

10:22 AM on Sunday, May 26, 2013

I would like to comment on the vulnerability theme of this post.  We are all very vulnerable to many things.  I would like to speak from personal experience regarding our vulnerability.
I have CVID and have been infusing for over 8 years.  My body did not respond well to SCIG, so I have had to stay with IVIG.  
Since I have terrible reactions to the infusions it has to be run extremely slow, and I require antihistamines given regularly throughout the infusion time which is in excess of 20 hours.  
I have been infusing on the same ward for the entire eight years, and one would think that the staff would understand why my physician has ordered such a slow rate and why I require antihistamines and nausea medication throughout my infusion.  It is the opposite.  During my infusion I get questions such as "why is it taking so long to cure you? There are other patients that have stopped coming for infusions"  
or "Why can't we run your infusion faster?" When I explain that when they ran it faster once, the next day I had acute renal failure!  Depending on the nurse I will get an answer such as "I don't believe you" or remaining silent. Regardless of how many times I explain the reasons, they keep asking.  
The questions how rather than innocent inquiries are feeling like harassment, and I am getting really tired of explaining.  I have gotten to the point that I leave a copy of my physician's orders on my bedside table and refer the person to the order sheet.  
The worst part is that during my infusion I am vulnerable due to the "fog head" that results from the IVIG!
Any comments? Ideas of what I can do with this situation?

8:33 AM on Thursday, June 06, 2013

To Sue,

I always come from a place of information. If a nurse, doctor, acquaintance or a family member asks agitating questions then it is time to let them know for ex. "I can see you do not know much about my illness and that is understandable since it is rare and complex, here is some information I have printed from the internet. I would really appreciate it if you could take the time to read it and then we could discuss it if you would like." It is up to the individual to accept or possibly reject you overture. Then you decide whether that person is worth having in your life or even taking care of your health. I have a great new article I blogged about called "Dating Doctors." Check it out, it addresses this issue - www.alyssarosengard1@wordpress.com
P.S. - Get the info for your disorder from the IDF website - primaryimmune.org

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