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Posted on 25. April 2014

Real or Imagined

By Rebecca Zook

Recently, I rejoined a Facebook group for common variable immune deficiency (CVID), which is my immune deficiency, and I kind of wish I hadn't. Since this is a closed group, people are much more open about their problems, and I was just about in tears reading the posts. People having to choose between paying their mortgage and paying insurance and thinking their families would just be better off without them. Losing insurance means losing the antibody infusions, and no one can afford them without insurance; for many it's still a struggle with insurance. Right now, a major insurance company is forcing patients with a CVID diagnosis to cease treatment for four months in order to "prove" they still have the illness. It's one week past my normal infusion schedule, and I'm in pain and sick. Four months could kill a person! They are also just refusing to cover the treatments for many altogether. Insurance companies deciding treatment, not doctors.

Then, there are so many who have family, friends and spouses who think their illness is not real or that they are somehow causing the problem by not eating right or not taking the right supplements. They accuse patients of just being lazy or stupid. Some have family members who have not spoken to them for years just because they are sick - because they don't understand the genetic nature of the illness or the variableness of the symptoms. The online community is all they have in the way of emotional support. Many are too sick to work regular jobs. A lot of us have secondary autoimmune conditions which are worse than the primary immune deficiency, and/or they have cancers. They are barely surviving. One bad illness can wipe you out financially. Imagine one that is lifelong and expensive to treat.

I want to thank my husband, my family, my friends, my coworkers and my doctors for believing. For not making me feel this isn't real and for the understanding and support. Coworkers stay away from me when they are sick and are understanding of doctor appointments. Friends insist on accompanying me to appointments to provide moral support or have lunch with me during an infusion. My husband has learned to devise meals that I can eat and are delicious. He does the vast majority of the cooking. He is also there for me when I occasionally indulge in a bout of self-pity. I appreciate this so much. It means everything. I am a strong person, but it would be so much harder without your support.

I am thankful I can still work full time and function in the world, though I have to watch my day-to-day energy expenditure. I have a great job - a creative, challenging job - that I enjoy with good benefits. I can sell my paintings for additional income (again, something that is already a passion for me). I have a house that is paid for because my late husband, Tom, was adamant about having enough insurance to cover it if something happened to either of us. I make enough money, so that my husband, Ed, has been able to go back to college and pursue his passion, and he is happier because of it. I have people who love me. I am in a much better place than so so many of my fellow zebras. I also know I could lose it all in a blink. That I am walking on a wire and doing everything I can to not fall.

The Zebra painting (pictured) is sold, but appropriate since those with rare diseases refer to themselves as zebras after this common saying in the medical community: "When you hear hoofbeats, think horses ... not zebras."


Comments (4) -

Joni Keefer
2:46 PM on Friday, April 25, 2014

My son has CVID, and fortunately, his is a rather mild case.  He has never had to be hospitalized for his illnesses.  He has missed close to 40 days of school in one year, prior to the diagnosis.  Now going into his second year of treatments, we've cut absences in half.   I am very thankful insurance covered his treatments, and that we are now doing home infusions that are much less expensive and raise fewer red flags with insurance companies.

The sad part is that he can relate all too well to the family and friends accusing him of faking when he is legitimately sick.  Even talking to the parents of the kids didn't help.  One family member (a year younger than him, middle-school aged)- insisted if he went outside and took vitamins he would be fine, that he was just pretending...  I even challenged them with all the meds he has to take on a daily basis and explained if his doctor, having done blood tests and other scans, decided he was sick, who were they to argue... and was met with a higher level of antagonism towards my son.

It's heartbreaking, indeed, what PID patients are already fighting, and such a shame that their family and friends refuse to understand.

I appreciated your blog.

Ellen Stanley
3:17 AM on Saturday, April 26, 2014

I can only say how real it is every time my son cannot catch his breathe because if his GLILD from CVID, when he comes home from work and says, "Mom, I think I need to go to the ER", and lastly, "the biopsies came back positive for Lymphoma". During the good days, people will remark "How good he looks". I even had one "friend" remark "At least you have had him for a long time." In dealing with this for over 35 years, I have come to the conclusion that he needs not to have to explain anything to anyone and that you find out who your real friends are. Unless you walk in the shoes of a pt with PID or as their caregiver, no one can appreciate this horrific disease.

Suzanne Colville
9:13 PM on Saturday, April 26, 2014

  Rebecca, Very well said.  I've been told it was all in my mind, that I had Munchausen's disorder, I was a "drama queen," I exagerated being sick, etc.   My entire life was going from one infection to another until I was diagnosed with CVID at age 61.  Now, after 5 years of IGG, daily doses of 500 mg. of Zithromax, daily 5 mg. of Prednisone, I haven't had any bad infections for over 6 months.  I've also kept myself isolated and at home.  Now I plan on venturing out to church in the morning for the first time in five years, wish me luck.  Cold and flu season are over, so now I only have to worry about my allergies to perfumes, flowers, trees, etc.  This CVID just keeps on giving, doesn't it?  Hugs and blessings.

Carol Bradshaw
12:09 PM on Sunday, April 27, 2014

Beautifully written Rebecca. I too just recently joined the closed FB group and any time I am feeling low and sick and tired of being, well, sick and tired, I log on and see so many stories of those worse off than me. Losing lifelong friends has become commonplace and even worse than trying to accept our own limitations is the struggle to educate those nay sayers in our families and circle of friends.

I'm convinced that just as in every other hard situation in life, attitude is everything! When life gives you lemons, you make lemonade kind of philosophy. It seems you have a wonderful support staff and are truly making lemonade. Also important is therapeutic expression and your painting is beautiful!

Thanks for your article and keep up the beautiful work. Healthy thoughts coming your way!

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