Invisible Illness Week (A snapshot of CVID)

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So we’ve seen the little meme’s floating around Facebook about “Invisible Illness Week”. Bloggers are blogging, Tweeters are tweeting. Shouters are shouting. Heralds are heralding.

I happen to be a blogger who lives with chronic illness, so guess what I’m going to do? Yep. I’m going to start shouting in 3, 2, 1….

Okay, I’m kidding. I’m not a shouter except when people recommend Echincacea to me as a cure for CVID. So here I am, far past my bedtime but the only time my house is quiet, blogging about something I never imagined I would have to learn to live with: Invisible Illness. I tend to think it’s an odd term, “Invisible Illness”. I mean, ANY illness is going to have symptoms, something about it that stands out, or makes life different for the person living it. Chronic illness isn’t really invisible. It’s just that people who don’t live it don’t catch those little things that stand out.

They don’t pick up on the visible symptoms….like missed school and work days. Like foods avoided and medication refills. Like excessive weight loss or gain. Like limited activities or long sleeves on a hot day to hide a rash.

They don’t pick up on the visible symptoms, because we hide them. And that’s what makes many chronic illnesses invisible.

For a long time, I thought these things were hidden because of shame. I thought those that went out of their way to hide the flare-ups, the pill bottles, the medication side-effects and the daily pain were ashamed of living with an illness they hadn’t asked for, and I couldn’t understand it.

But after over a decade of raising 3 children with Common Variable Immunodeficiency (CVID), I’ve met a lot of people who live with “Invisible Illnesses” (and been diagnosed with a few myself) and I think I’ve started to understand that it isn’t “shame” that keeps them invisible.

It’s just that we get tired.

We get tired of answering the questions. You know why? Because the people who ask them don’t listen to the answers. And they just keep asking.

We get tired of explaining why their particular herbal remedy/supplement/vitamin/fancy juice won’t work to fix our problems.

We get tired of justifying our choices of treatment, because the people who condemn them don’t understand the options available (but they judge our decisions anyway).

We get tired.

We get tired of explaining the ins and outs of insurance coverage, and of allergic reactions, and that yes, we understand that your Uncle’s Cousin’s Neighbors Great-Aunt-Twice-Removed once talked to a veterinarian who treated a dog whose owner thought she might have had SOMETHING LIKE THAT, and healed it with Echinacea. Just like that! But really, people, if we could cure our chronic illness with a $5 bottle of an herbal supplement bought at the local Wally World….don’t you think we would?

Do they REALLY think we want life to be this difficult? This painful?

Let me tell you something, Healthy People of the World: When you talk down to us like that, as if we are too dim-witted to research and investigate and make logical decisions based on our personal diseases, hours of discussions with our physicians, and research, research, research….well, Healthy People, that’s the kind of thing that causes those living with an Invisible Illness to feel guilt. And shame.

It’s the kind of thing that makes us want to hide.

It’s the kind of thing that negates the confidence we have achieved (hard-won), through days and weeks and months and years, yes, YEARS, of struggling with pain and fatigue and illness, of drug trial and error, and of learning to accept that we will never again be one of YOU, Healthy People of the World.

And at first when we get diagnosed, we want to inform everyone else, expand their mindsets, pour the knowledge we have gained directly into their brains, so they can understand when we have to cancel plans at the last minute (NO, it’s not because I suddenly don’t like you) or bring our own food to the party (NO, it’s not because we think you’re a terrible cook) or we begin to weep at the sight of another person, a Healthy Person, engaged in an activity we will quite likely never be able to participate in (NO, for crying out loud, please don’t ask me if it’s PMS).

But these other people, it seems like they don’t want to hear us. We talk and talk and show articles and read research studies and learn and learn and learn so we can be ready for those questions.

And when finally the questions come, they sound a lot like, “Have you tried a cold washcloth in a dark room?”, or “Do you eat enough fruits and vegetables?” or “Have you tried *insert any form of unproven, unhelpful, pseudoscience here* “?

We answer the questions, we answer the questions, we answer the questions. We answer them again.

And yet, we continue to hear the SAME. EXACT. THINGS.

Many people simply DON’T. WANT. TO. LEARN.

And so, we stop talking. We stop informing. We stop shouting.

We kind of just give up, and we quiet down. We begin to just smile at the suggestions and nod at the offers of help from people who think they know somebody who knows somebody who knows a little whisper, a teensy fragment of the pain we live with EVERY. SINGLE. DAY.

These are the things that make us so tired. And we are exhausted enough already.

These are the things that keep us invisible.

So in honor of Invisible Illness week, I’m listing 5 things I wish you knew about Common Variable Immunodeficiency:

1. No, My Dear God, NO, Echinacea won’t boost a dysfunctional or deficient immune system. Think about this: If your immune system is dysfunctional, WHY would you want to “boost” it? You’d only succeed in boosting more abnormality.

2. No, Primary Immunodeficiency is NOT AIDS. NO, it isn’t. I know you hear the part of the name that says “immunodeficiency” and that’s what you automatically think of. I know that. But a primary immunodeficiency is a glitch in the system that is present from birth. It’s not caused by sex, drug needles, or licking a nasty seat on a subway.

3. Yes, we know we need a lot of antibiotics and steroids. Yes, we know that isn’t great for most people. Yes, we have to take them anyway. Why do you want to keep arguing that point?

4. No, living with this disease is not a death sentence; there is currently no cure, but there are some great treatments out there. Respect the ones we choose.

5. No, we are not mean parents because we treat our CVID kids with infusions or subcutaneous injections. You say, “I couldn’t do that to MY child!” But I guarantee you could. You’d do it because you would know it was the best thing for your child, and you’d buck up and get’r done. You’d feel bad, and you’d wish you didn’t have to, but you’d do it anyway.

WARNING: Hey Person Who is Interested in asking me to try giving my kids Echinacea instead of “letting them be stabbed with a needle” every month, please enjoy the feeling of the great big grill on the front of my great big diesel truck against your head. (My neighbor had a sister whose across-the-road neighbor knew somebody at the barber shop who said that was a great, all natural cure for fat-headeded-ness).

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27 responses to “Invisible Illness Week (A snapshot of CVID)

  1. What a brilliant post, I agree with everything. People will never understand because their minds are closed, they do not want to. I have had M E for a number of years, got well enough to go back to work once but it’s a struggle. I don’t tell people now and just live how I want to live and if that means being in bed for a while then ok, I know my own body. I like to write but even that is hard sometimes. I know if I have a day out I will feel awful afterwards but sometimes you have to go with it. I miss doing things with the grandchildren and just living normally. I’m happy though, I have accepted, I don’t listen to stupid remarks. I have compassion for myself I don’t need anyone else’s. xx

  2. so very sorry for all that you are experiencing and yet I do understand. This was a beautiful post and I have shared it on our Invisible Illness Awareness Week Facebook page just now and our pinboard. (this is Lisa, the founder of #iiwk) Blessing to you…

  3. especially smiled when reading this one because I have tried to explain this a million and one times ๐Ÿ™‚ . “No, My Dear God, NO, Echinacea wonโ€™t boost a dysfunctional or deficient immune system. Think about this: If your immune system is dysfunctional, WHY would you want to โ€œboostโ€ it? Youโ€™d only succeed in boosting more abnormality.”

  4. “We get tired of answering the questions. You know why? Because the people who ask them donโ€™t listen to the answers. And they just keep asking.”

    A-MEN.

  5. My 5 year old was just diagnosed with CVID .. I’m having trouble finding any info other than just the basics online .. Could you please email me as I think you may have a wealth of info I could use .. Thank You Amy

  6. My daughter has ITP (Ideopathic Thrombocytopenia Purpua- I am probably spelling it wrong) which also stems from a dysfunctioning immune system. Her immune system attacks her platelets. People really don’t get that her immune system just doesn’t work right. It is NOT that it is too strong or too week.

  7. I have CVID and IC and Fibro. and Multiply Chemical Sensitivity (MCS) and IBS and Hypothyroid and high cholesterol (I think that is all) anyway….I loved, loved, loved your blog and laughed out loud! (have not done much of that lately). I had a lady at my church who asked if she could pray for me…long story goes “and Lord help her to just suck it up….” need I say more? I would rather she had offered the Echinacea! lol

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