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Posted on 12. June 2014

Learning to Speak My Truth

by Abbie Cornett

How do you explain that you have a rare disease? Before I was diagnosed with common variable immunodeficiency (CVID), I played the revolving door game with the intensive care unit. I was healthy and seemingly normal for a few weeks, then I would catch the flavor of the day and crash. This was something that neither I nor my doctors could explain. It severely affected my chosen career. I was forced to use all my vacation and sick leave, and was without pay for long periods of time.

Once I was diagnosed, I immediately began regular intravenous immune globulin (IVIG) infusions that keep me from getting sick all the time. Yet, even though I had been diagnosed, I hid my condition. I didn’t want pity. Then, in 2004, I was elected to the Nebraska state legislature. It was at that time that my immunologist convinced me to become active as a patient advocate. He made me realize how fortunate I was.  

I still struggle with admitting I am sick. For me, even writing this was difficult. I don’t enjoy the sidelong glances when I explain I have an immune deficiency. The only real comparison I can give is a reference to the 1970s movie, “The Boy in the Plastic Bubble,” but with access to modern medicine. I have friends and family who have known me for years, and who still don’t understand my illness. When they ask me for the umpteenth time what exactly is wrong with me, I take a deep breath and remind myself that their questions are a sign that they care. Where before I would hide it, now I take the time to try and explain. Sometimes, I have to repeat it over and over to the same people. Everyone “understands” cancer and chemo, or diabetes and insulin. No one understands the side effects of receiving an infusion of IVIG once a month. There aren't enough of us with CVID for many people to have heard of it. 

When I explain I have to receive monthly infusions, people act like it’s my choice. I’m asked: “If you feel that bad afterward, why do you keep doing it?” I want to say because I have children who I want to see grow up. Without monthly infusions, I don’t know if I would. I don’t know if I would get to watch them graduate from high school and college, to be married, or to one day hold my grandchildren. When I get asked: “Aren’t you used to it by now?” I want to ask them if they had the flu every month for the rest of their life if they think they would get used to the headache, muscle aches and other even less-pleasant side effects.

But, when I think about saying these things, I stop myself and remember how lucky I am. I have people in my life who care enough to ask. Many people go through life without people caring about them or trying to understand. So far, I don’t have any serious co-diagnoses like so many patients do. I get my “go juice” every four weeks and live a normal life. If you met me today, you wouldn’t even know I was sick, and to be honest, I still don’t routinely admit it (even to myself).

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Comments (5) -

Susan Cater
6:26 AM on Friday, June 13, 2014

Abbie, your article is so true! Family members who know my illnesses & living my life around the infusion center & doctor appointments are very supportive & can see when I have pushed myself to my limit. Others who know I am sick always say you don't look sick or in pain. I just smile & tell them thank God for makeup & coverup. But when they see how many pokes & vein blows from my ivg treatments they believe me. I also use the boy in the plastic bubble to explain my illness. CVID is not the only chronic illness I have but I wake up every morning with a positive attitude & practice daily affirmations. For once in my life I have had to put myself & well being ahead of others. It was & still is very hard to do. Thank you for sharing your story!

EBeth
6:27 AM on Friday, June 13, 2014

Abbie, thank you for this post. It resonates with me, and I am sure with many, many others, on so many levels. When and how to tell people about our immune deficiency and what it means for us can be really tough. Thank you for being one of spokespeople and helping pave the way for others. Much appreciated.

Gail
1:51 PM on Friday, June 13, 2014

Sometimes I think it's not worth the effort to explain, but then I give in, or try to. I have CVID, and it's a complicated disease, and sometimes I see far-away looks when I try to explain. When I told one person that I have an immune deficiency, I was asked if that means AIDS. We need all the advocates we can get, so thank you for standing up for us. Most of us don't have the luxury of being in your position, relying instead on one-on-one encounters to tell people about immune deficiencies. I think we need a primer to give us a "script" for how tell others and answer their questions. Even people I've known a long time and family members probably still don't get it. Plus, I think it is a natural instinct for people to not to want to seem stupid by asking questions. So they just nod their heads, and we think we've gotten through. But, chances are, we haven't. I've been at this for several years, and I can't blame others for not understanding when it took me a long time to understand the intricacies of my disease.  

Debbie
8:20 PM on Friday, June 13, 2014

Your post provides further insight into how we can explain our disease without sounding "whiney".  I like the term "go juice" - I usually refer to my treatment as getting "juiced up"  I do believe we need to explain our disease - but also believe we need to explain in a way that reflects the positive results of our treatment and living with modern medicine today.  It truly helps to hear other's stories and how they work through these everyday issues.  Thanks!

Shanna
10:56 AM on Tuesday, July 22, 2014

Hi!
I just stumbled on this blog as I sit here dealing with my second ivig treatment. I have relapsing/permitting multiple sclerosis and have had sensitivity/allergic reactions to all current first line treatments. My neurologist said IVIG would be "better than nothing" for me as I'm progressing with the MS. Little did I know a couple of years ago, when my diagnosis was confirmed, that I would be faced with a treatment that is off-label for a disease that can usually be treated with interferons or newer oral treatments. Lucky me. I was the first patient to report an allergic reaction to the newest MS drug. All these ups and downs have left my family and friends confused and frustrated and reaching for advice to give me, solicited or not. I try not to think of myself as sick so much as battling a relatively rare and very unpredictable disease. It's not easy being the atypical patient. Even others with MS don't quite know how to relate. What I do cling to is a tenacious insistence on looking for things daily to be grateful for and doing the best I can to accept that there are relatives and friends who can't handle all these changes very well. And accept and even celebrate that I'm living this with as much strength and humor and honesty as I can.

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