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Posted on 25. February 2016

Living with CVID

By Jasmine Miller

It’s hard.

That’s what they don’t tell you when you get diagnosed. They tell you things like “It’s manageable.” Of course, that is what they’re supposed to do. They’re doctors. But nobody ever tells you that it’s hard. Not the doctors, not your family, not your friends. Nobody says it. Nobody wants to be the one to say it. And that’s sad. They want you to be strong; they want you to think that it’s not too bad. Because maybe if you believe it, they’ll believe it, too.

It’s lonely.

Nobody warns you how lonely it gets. Because, at first, everyone is supportive. Everyone. You post about the bad news, and everyone is swooping in, saying that they’ll be there for you, that you gotta look on the bright side, that they are thinking about you or praying for you. But once the novelty has worn off for them, you become someone that gets put on a shelf. Because you’re sick, you can’t go out as much. After you say no so many times, people stop inviting you. You have to cancel hangouts and meet-ups because you are too sick to go out. But when you invite people over for a night in, they don’t want to do that. You’re the one who is sick and trapped, not them. They want to be young, and be out there living life while they are still young enough to live it. So, your phone stops ringing, and people stop replying to you. And when you do get invited, you feel the need to thank the person who invited you. You feel like you gotta thank them for THINKING of you. You’re thanking them for making you feel like the space you take up in this world matters. That’s an ugly truth. But nobody wants to be the one to say it.

It’s halting.

Nobody wants you to know how this will hold you back. Being sick means that every damn day is a struggle. Being sick means you need to “push through it” all the time. And it’s common to be told “just push through it” or “just try a little harder” when others don’t see the everyday struggle. They don’t see how taxing it can be to take a shower, to brush your teeth, to get dressed. Nobody mentions how hard it is to admit that you can’t do things you loved to do. Nobody warns you that there are now foods you should avoid that you loved to eat. Nobody warns you about the inevitable day when you wake up and you can’t find a reason to get out of bed. Nobody tells you that you might not be able to keep working. Nobody tells you that you might have to drop out of college for a while. Your life literally grinds to a stop, and just when you think you’ve got momentum, you get sicker and need to stop again. It’s like driving a car while riding the brakes. All your peers, all of your friends will pass you. They will outstrip you by miles. But nobody wants to tell you that in a world where society is so fast-paced.

You have to go slower. You have to take longer. You have to put things aside and put your health first. And whenever you overdo it, your body punishes you for it. And you’re sick for days, weeks, trying to recover from something as innocent as a trip to the beach. And nobody wants to say a damn thing. Nobody wants to tell you that these things WILL happen because they don’t want to discourage you.

And you want to do your best, but you’re just so damn tired. You’re tired of being sick. You’re tired of not being able to keep up. You’re tired of cancelling plans. You’re tired of watching everyone else pass you. You’re tired of being so lonely that you just want to scream. You’re tired of having to just “push through it.” You’re tired of negative thoughts running through your mind as you wonder if life is worth living if you’re not getting to LIVE. Most of all, you’re tired of being tired.

And we, as a sick community, don’t talk about this. We don’t vocalize it. We don’t vocalize it because, if we do, people don’t want to be around us. We kill the mood; we bum everyone out. We can’t vocalize it. And because we can’t vocalize it, we are often heralded as being brave or being heroic. WE ARE NOT LIVING OUR LIVES TO BE HEROES. We are living our lives for the same reason healthy people are: We are living to LIVE.

I’ve been sick for almost four years now, diagnosed for about two. I can tell you from experience that there are days when I still feel as if I just got diagnosed. There are days when the reality of me being sick is just too much for me to handle. I still have bad days. Days when I can’t get out of bed because I don’t see a point. Days when I’m so sick of “pushing through it” that I just want to scream. I’m sick of being lonely, and I’m sick of being sick.

That’s OK.

That’s another thing nobody bothers to tell you. It’s OK to feel like this. It’s OK. Your feelings matter. Your feelings are valid. You matter. You are allowed to feel like this. You are allowed to be angry. You are allowed to be upset. Because, you’re human. You’re not a robot; you are a human being. You are going to have setbacks. You are going to fall. It’s gonna happen because you’re sick, and it is inevitable. When it happens, take a day. Take two days. Take a week, if you need to. But then, make a decision. Start back up again. Ease back into living. Start by taking a shower, and turning on the light. If you can do that, then I’m proud of you. If you can’t, and all you can do is get out of bed to get some water, then I’m proud of you. If you can’t do that, and all you can do is sit up in bed, then I am proud of you. And if you can’t do THAT, and all you can do is open your eyes and acknowledge the new day, then I am SO proud of you. There’s this stupid mentality that doing these things, taking things slow, is weak. And it’s not. Acknowledging that you are not OK and you need to start over is the strongest thing that you can do.

You are strong. You matter. You are allowed weakness because you are human. You can cry, you can laugh, you can live in your own way. You are allowed to live in your own way. Some days will be hard, some days will be lonely, some days will come to a halt.

And that’s OK

 

This article is printed with permission from Jasmine Miller.

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Comments (19) -

smallinn
6:58 AM on Friday, February 26, 2016

The article  by Jasmine Miller....Living with CVID.....is excellent.
One word sums it up: HONEST. She speaks the truth to those of us, like me, with a very serious case of CVID , who need to hear it from one of us. I am  fortunate. I found a Taoist school ,of the internal arts, and using those arts, after many years of training, have ben able to get my   health  mostly stable and have good  control over my health problems. I refused to take all but 3 of the many ( over 15 ) RXs MDs ordered me to  take.
But I live reclusive, and gave up most everything people value  most in life, job, own income, relationships, social life,  foods they enjoy , travel and most everything  else people do in a " normal life ".
Oddly enough I gained more in my efforts than this terrible CVID took from me, I am blessed.

So I hope jasmine keeps writing the honest  way she does and  keeps living her life in the honest way she does.

Well said, and well done.
Take care,
smallinn

John Boyle
7:05 AM on Friday, February 26, 2016

This is GREAT, Jasmine - thanks for sharing!

And thanks, IG Living, for posting!

Rochelle
7:07 AM on Friday, February 26, 2016

Thank you for your article! I read part of it to my husband and he said "that's depressing." I told him it always helps to know I'm not alone; I'm not the only one experiencing these things. It helps remind me to feel good about what I am able to do. I am fortunate that I have a husband who is very supportive, who does take care of me when I'm sick - though I know my illness frightens him.
Thank you again, for saying what I feel!

Lois Shepherd
8:00 AM on Friday, February 26, 2016

This article 'tells it like it is'.  My families do not live locally so on days that are not so good, it is just me, myself and I.  I feel fortunate to have caring friends and neighbors and I try to enjoy all the positive things that are present in our world.

Suzanne Colville
8:12 AM on Friday, February 26, 2016

Jasmine Miller, you have hit the nail right on its head in your essay.   I couldn't have stated CVID better.   I lived my entire life with this disorder, but wasn't diagnosed until age 61.  Being ill constantly does limit your lifestyle, chase away friends, family and even husbands.  Now at age 69, after being on IVIG with Gamunex for five years, I'm the healthiest I've ever been except for severe COPD (from lung damage from undiagnosed CVID), and very severe osteoarthritis (high pain level constantly), but no more constant bronchitis or sinus infections.   I'm very grateful for that bonus.  I do take prophylactic antibiotics daily and my infusion is every 3 weeks.   Praying for you and hoping things get easier.  The Immune Deficiency Foundation has a lot of things and people to help ease your way, keep in touch with them and their resources.  You won't feel quite as alone if you do.  Hugs.

Joanne
12:52 PM on Friday, February 26, 2016

This communicated everything I'm feeling. Thank you for saying it so well. People who aren't in the situation don't understand

Pamela Stants
1:56 PM on Friday, February 26, 2016

Wow, what a powerful article!  You hit the nail on the head, as some of the same comments can be applied to other disorders.  I don't have CVID, but another rare auto-immune disorder, so I can identify the feelings expressed, loneliness, having to cancel activities because you are ill.
You are Never alone, there're others who are in the same boat as you.  Most of all, Take care of yourself.

jacquie
3:05 PM on Friday, February 26, 2016

Jasmine, my wish is that you find 'peace' with this debilitating disease. I can't imagine dealing with it at your age. I had managed to finish grad school and get married in my thirties. In January of 1996, I spent a day in court, getting sole custody of my children (then 6 & 8), and at the doctors arranging for my mastectomy. Working in the public schools, it seemed I was constantly sick and out of sick days after that. By the time I hit 50, I began a roll of 12 bouts of pneumonia in 10 years. I felt like I was always 'in recovery'. My children had a mother who was always tired. I was 60 yrs old before I discovered an immunologist. She was getting the pneumonia under control when I was exposed to chemicals at work that put me in the hospital for 10 days and dropped my already low IG into the danger zone. I had to retire early. I look back on all the difficult undiagnosed years in frustration; especially at hearing 'your sick AGAIN'. But I am learning to let it go. As Suzanne mentioned the wear and tear has left me with ongoing lung issues, arthritis and recently diagnosed fybromyalgia. I'm so sick and tired of being sick and tired! Then there are the good days. I have been on an IVIG regiment every 28 days for over 2 years now. The first year was rough. It is getting better (especially when my veins cooperate). It isn't fun working my life around that schedule but there is a more predictable flow to my ups and downs. 'Motion is the lotion' for the fybro, so I attend arthritis water classes and swim several days a week. Some days I don't feel like going but I know that my breathing is improving and my pain is lessened so I persevere. I have discovered meditation and fortunately it helps for me. I miss hiking and traveling. My is constantly a mess. But I am ALIVE and my quality of life is improving thanks to the IVIG treatments and a willingness to go with the flow no matter what others expect of me. I never heard of CVID until the day a doctor said I had it. I can't expect those with typical immune systems to have a clue. Here is wishing you an 'attitude of gratitude' to over come your frustrations and loneliness.    

Fezzywig
2:29 PM on Saturday, February 27, 2016

Thank you Jasmine.  You have nicely covered the emotional toll that CVID,  with all of its array of physical burdens, takes on so many of us.  It is such a gift to listen to your validation of how I feel much of the time.  You make me wish I had the strength to put some real effort into finding Zebras geographically nearby and put together a support group.  I used to try, but with such unpredictable health I could never get too far.  Sometimes it amazes me that we ever get anything organized.  Yet, it just goes to show how differently we all are affected throughout this crazy CVID life.      Let me just say, Thank You again.  You have made me feel better simply by sharing so much of yourself.  You have given me that precious validation that we all need so much every so often.  That 'validation' means that I don't have to wonder so much if I really am turning into a hypochondriac, and it gives me the relief I need in knowing that I am not the only Zebra who seems to have lots of extra, inexplicable pain and suffering.  It really does help to know that I am not alone.

Kathy Armstrong
8:04 PM on Sunday, February 28, 2016

Thank you Abbie - I feel like I could have wrote this. Spot on

Kathy Armstrong
8:05 PM on Sunday, February 28, 2016

Thanks Abbie. I feel like you took the words right out of my head and heart.

Kim McCollough
12:13 PM on Saturday, March 05, 2016

I, too read part of this to my husband.  After 7 foot surgeries on my left foot, bones wouldn't heal and a broken leg/ankle on my other foot, I am treated mostly as though that is my problem, forgetting all about my cvid.  I've been treated for it every three weeks for 26 years.  Anyway, spot on with your article, you spoke for so many of us. Keep spreading the word for all of us with cvid!

Dolores Claesson
3:59 AM on Sunday, March 06, 2016

I think many of us with CVID have underlying pathogens that have taken down our immune system.  Many of those pathogens are vector borne.  In addition, to low IgA and IgG and NK cells etc.  I have many co infecting agents of LYME disease and think everyone with CVID should be tested for certain pathogens.  Once the immune system becomes compromised we are open season for many infecting agents.  Lyme patients build scant antibodies to 14 serotypes of strep pneumoniae as well.  In my family, two of us have CVID and we have Borrelia burgdorferi, Borrelia hermsii, Babesia duncani, Ehrlichia Chaffeensis, Bartonella, antibodies to Brucella, Chlamydia pneumoniae, Mycoplasma pneumoniae, Toxoplasma gondii and all sorts of viruses. One other family member is positive for Rocky Mountain Spotted Fever.  

Jan Bohinc
6:38 PM on Friday, March 25, 2016

Hi Abby,
You write extraordinarily well, which paired with your open vulnerability has allowed you to create a piece that touches everyone. I agree with another commenter that there are many others, beyond those with CVID who share our experience. I hope you will consider having this published elsewhere.

. As someone else said, I am very greatful that I had a late onset. I can't imagine what it would be like to be in your "productive years" and/or without an understanding partner. I appreciate your encouragement to accept myself, as I am and to try not to aspire to the life others have. Who knows how happy they are, anyhow??😀

Thank you for this gift.
Jan

Paula
3:07 PM on Wednesday, May 03, 2017

Jazmine,
Well said! It's strange to hear my life put into words by someone else.
The only other thing I would add, is a whole boatload of guilt, I feel it everyday, I can't be the wife husband deserves.

Jackie
6:01 AM on Monday, October 09, 2017

Your article describes my life exactly. It's so difficult when friends, family and coworkers don't understand.
Even my PCP has commented on several occasions that I "don't look sick"when I feel awful. Thank you for  validating what I've been going through all my life.

Paula
12:43 PM on Friday, November 03, 2017

Jasmine
This is great for me too, I'm unable to articulate, along with C.V.I.D. I have alexithemia and pretty sure other personality traits, Thank You so much for this essay! Paula

jeff hildebrand
7:27 AM on Tuesday, November 07, 2017

Thank you Jasmine, I have been diagnosed with CVID for nearly 15yrs. And EVERYTHING you said in your article is absolutely true!! I am 49yrs old, and I really never opened up about my illness because of when you tell people you have a immune defiency people automatically think " oh, you have aids"? And then I get offended and have to explain them the WHOLE story, esp. when children is present. I just wanted to say THANK YOU !!!!

jeff hildebrand
7:35 AM on Tuesday, November 07, 2017

I just wanted to also say that CVID has caused me to lose 3 jobs ( calling in sick, or in hospital ) now finally on disability. And it caused me several relationships. ( not believing I'm sick, or I'm just faking it, to many dr. visits, so on and so on.)

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