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Family: "what Health Problem."

1desperateladysaved

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1desperateladysaved Proficient
1desperateladysaved
Posted

I had 30+ years of celiac disease symptoms.  My symptoms are mostly neurological.  Namely brain fog, fatigue, and numbness.

 

Now, I have been gluten free for 10 months.  My family is complying with most of my pleas for my diet to be right.  They have seen me eat in the car when they go to restaurants.  I have brought my own food when going to relatives. I am taking many supplements daily.   IS this just for fun?

 

Yesterday, my husband came up with the idea of having a prayer meeting for someone's health in our family.  None of my children 8-20 knew who in the family we would pray for.  They didn't see us having any problem so severe as to require one.  We had just attended a prayer meeting for someone with an Auto-Immune disease.  Now, that is severe enough to warrant it.

 

 

We have experienced this denial for quite a while.  My doctor wrote a letter to my family last summer.  She said that I had an illness (5 years back) that was severe enough to cause death or severe disability.  She also stated that I had been making progress, but still had a ways to go. 

 

All of the while (and still) my family doesn't know?!  I have a great family; I don't know how I got them.  But I just can't understand how come my severe illness is not acknowledged.  Do I hide it that well? Or do I just look like a complete jerk?

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shadowicewolf Proficient
shadowicewolf
Posted

Because people have the inability to see it. It is not like, say, loosing a limb. They can see that. Something like celiac disease doesn't fall into it. They just do not see it regardless of how cruddy you are feeling.

nvsmom Community Regular
nvsmom
Posted

You probably do hide it well. Most of my family had no clue that I had it...hang in there.

((Hug))

kristenloeh Community Regular
kristenloeh
Posted

Since it's not something they can "see", most people just don't get it. It's along the same lines as PTSD or any other mental illness. If a person isn't "visibly" ill, like coughing, bleeding, or anything like that, people just assume that it's not that big of a deal. Most people lack the ability to empathize already, but when it comes to something they don't even understand or see, it's even worse. I have been accused of over exaggerating my Celiac and my pituitary tumor. It sucks, but unfortunately that's  how most people work. They are even worse when they have never been ill themselves, so they don't understand the daily struggle of someone who is ill.

cavernio Enthusiast
cavernio
Posted

Did you tell them that celiac disease IS an auto-immune disease?

1desperateladysaved Proficient
1desperateladysaved
Posted
  • Author

Did you tell them that celiac disease IS an auto-immune disease?

Yes, that is exactly what I said before I was shusshed.  We do have younger children that we do not want to upset.

notme Experienced
notme
Posted

i think that we do hide it so well, we don't look sick.  i was glutened recently and it takes TWO WEEKS to recover from a hit for me.  after about 3 or 4 days, everybody forgets that my body is still so sore and sick and out of whack.  "what's the matter?  why are you so tired?  why don't you eat ______??  it's gluten-free.... "  PEOPLE.  IT TAKES TWO WEEKS FOR ME TO RECOVER.  seriously, i should wear a countdown clock on my head or something.  and i hate to keep saying, "remember TEN DAYS AGO when i told you i got gluten.  well, it's the gift that keeps on-a-giving  :(  even if *you* forgot about it, doesn't make me 'better' any faster.  

 

honestly, repeating myself about stupid gluten makes me feel/sound like a hypochondriac sometimes.  but here it is, day 15, and i am out of bed, dishes done, laundry put away, etc.  what a difference from even 2 days ago.  i am loading up on protein today, can't get enough of it :)  today.

 

don't feel alone, ((hugs)), and thank you GOD for this forum.  y'all have a blessed day!!

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notme Experienced
notme
Posted

Yes, that is exactly what I said before I was shusshed.  We do have younger children that we do not want to upset.

i call b.s. - my grandbabies all know meemo has celiac disease and has to eat gluten-free.  even when they pretend to cook with their play dishes, they make mine gluten-free.  ("don't worry, meemo, it's not on regular (pretend) bread - we make your samwiches from your freezer bread") and they are FOUR. they could care less about auto-immune and they pray for me anyway.  i never lied to my children about something like that - how will they ever learn coping skills?  eventually they have to go out into the harsh world.  i would rather have them learn things like that at home.  

1desperateladysaved Proficient
1desperateladysaved
Posted
  • Author

i call b.s. - my grandbabies all know meemo has celiac disease and has to eat gluten-free.  even when they pretend to cook with their play dishes, they make mine gluten-free.  ("don't worry, meemo, it's not on regular (pretend) bread - we make your samwiches from your freezer bread") and they are FOUR. they could care less about auto-immune and they pray for me anyway.  i never lied to my children about something like that - how will they ever learn coping skills?  eventually they have to go out into the harsh world.  i would rather have them learn things like that at home.  

Oh, the friend we were praying for has been in the spot of obvious coming death and did end up with what is thought to be permanent impairment.  His kidneys fail.  I have problems, but so far I can go on.  The children may have been confused if I kept up my comparison.  I am sure the older ones did catch it. 

 

I wasn't shusshed for what I said, but for what I might say next.

 

I wouldn't advocate lying either, they know I have celiac and the little ones are great helpers for me.  Yes, I have had pretend hamburgers on lettuce!  But they don't need to know yet, if the situation might not come to the resolution we desire:   Namely Life and energy restored in this world.  There would perhaps be a time to explain that when and if the situation gets worse.  I am hoping I can serve (better than now) as I heal.

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    • trents
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      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
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