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Invisible Illness: Type 1 Diabetes.

If you just snapped a quick picture, you wouldn't see it.  Not unless you were looking for the small signs, like my insulin pump.  Or my spotted fingertips.    

Type 1 diabetes isn't something you can see on me.  It's not an illness that, at this point in my life, comes with any constant external symptoms.  I am fortunate enough to not use a wheelchair or need vision assistance devices.  You can't see my disease, even though it's something I manage every day.

I seem "normal."  (Stop laughing.  Let me use the word normal for the sake of this blog post, at the very least!)  I seem like your average 30 year old professional woman (again, stop laughing), recently married, inspired to achieve, and happy.

And I am happy. 

But my good health is not without great effort.

Type 1 diabetes is a chronic illness, and one that has required daily maintenance and effort from me, and from my caregivers, for the last 23 years. Every morning starts with my meter.  Every meal I've eaten in the last two plus decades has been preceeded by a blood sugar check and an insulin dose.  And every night has my finger pricked by a lancet before my head hits the pillow.

This isn't a pity party.  Not by a long shot.  My life is healthy and I have a very fulfiling existance, even if days are bookended by diabetes and even if I'm now wearing medical devices 24 hours a day, every single day.  And back when I was a fresh-faced litttle kiddo, people seemed to want to cure my disease because they didn't like the idea of a small child dealing with this disease.  

Kids are fun to cure.  They're cute.  And their futures seem worth investing in.

What confuses me is how quickly people forget.  Type 1 diabetes became a part of my life a long time ago, and I don't remember even a snippet of "the before."  But even though I've lived very well with this disease and kept it from defining me in any way, it's still here.  And it's still something I deal with every day, regardless of how well or poorly controlled.  But just because I'm no longer a little kid with the bright, shining future, am I any less diabetic?  Any less deserving of that cure?  Just because you can't see my disease, and because I seem to have it under physical and emotional control, does not mean it's past the point of deserving a cure. 

Here is a vlog post that I did back in February about vlogging during a low blood sugar and how "diabetes can look so normal yet feel so rotten."   It's a video that shows how invisible diabetes can be, but how visible it feels from the perspective of those who live with it:

Children with diabetes grow up to be adults with diabetes.  And all the while, we're still ready for progress. And for hope.  And for a cure.

This week, September 14 - 20th, is Invisible Illness Awareness Week.  And today, I'm raising my voice for type 1 diabetes. 

Comments

Woot!

I've been raising my voice about that fact, diagnosed as a kid with Type 1, I Grew Up. I am an adult now.

Ok, that last part is debatable but still.

Diabetes is here to stay. No matter my age.

The first time I saw this I choked up because I could see it in your eyes. I could see that they were not the same. The way I know I look when I am low.

It is invisible to non-d's but it's like we have D-Ray vision. Great Post Kerri.

I'm sorry that you have to say it, but well said nonetheless.

Great post Kerri.

Great post Kerri!

Chronic, resilient & invisible w/D-ray vision...the DOC are my superheroes!

It saddens me that we have to be grown up and have people not care to "cure" us the way they used to. It's hard to raise money for a professional, "normal" adult....when kids are so much cuter.
Either way, we ALL deserve a cure. And sometimes being invisible is more of a hinderance than if it were something everyone could see...

How weird - as I was watching your vlog about your low, Aleksi started getting more and more 'irrational', well more than a 5 year old is normally! Checked his blood sugar - 4.2 mmol/l(75mg/dl).Now sorted!
He will grow up too, to be an adult with Diabetes - but who knows what may happen in the next 10-15 years. Here's to a cure for ALL those with Type 1 Diabetes. I can but wish and hope.

I think you are speaking with my voice with this post. Even though I raise money for certain foundations that fund research for a cure I have alway felt that the focus on the kids a little myopic. To be sure there are more adults with Type 1 than kids. At 18 all those cute little kids become adults who will live longer as adults with diabetes. They still deserve a cure.

'I seem "normal."'

Says who? I looked in the dictionary.

1. beyond what is usual, ordinary, regular, or established.

2. exceptional in character, amount, extent, degree, etc.; noteworthy; remarkable

It didn't say normal. The word defined was extraordinary.

Keep writing and I'll keep giving you grief. Consider this comment outside normal too.

At first i laughed with you at your low VLOG. But then the realization of the whole thing hit me and my emotions changed. I think only those who have been there can really appreciate how you felt. Keep us the great work and congrats on the A1C.

I must have missed that vlog first time around but I'm so glad to have seen it. It was so honest and real and familiar, I teared up. Sometimes I like the fact that I can hide things like diabetes and lows - but it's so important to show the invisible suffering, even if I might sometimes want to appear "normal." Thanks for posting this, it's important and helpful to read about the reality of anger that comes w/ diabetes as well as the optimism!

I can think of no other illness I treat in which doctors ask patients to do more.

Since sugar is a moving target and subject to so many variables we are asking you to constantly make complex disease management decisions every moment of every day for decades. We doctors get days off from medical decision making, but diabetic never do.

My hats off to Type I Diabetics! And good job on such an encouraging and informative blog!

I have fooled the best of people when my blood sugars have gone low. Although my brain is struggling for semblance, I put on the face of normalacy. I struggle, even when low, to be normal, which of course is impossible. We even can fool ourselves and that is when it is so dangerous. Thank goodness for meters, pumps and sensors. But with modern technology, it brings modern headaches also.

Good job Kerri.

Kerri.

Thanks so much for this post. My daughter was diagnosed at 16 months and is now three. It's hard to know what she is feeling when she is low, and it's even harder explaining to friends and family why my gorgeous and healthy girl needs so much constant care.

I'm sure that post was hard, and you struggled with publishing it, but I am SO glad you did. I will be forwarding it to everyone we know.

THANK YOU!

P.S. We live in Boston, you guys are going to love it here. Welcome!

Thank you for your vlog today. As a spouse of a PWD who cannot detect his low blood sugars anymore, it is refreshing to see somebody be pro-active about catching them and doing something about it.

Thanks for blogging Kerri, I click into your page most days. I am a mother of a Type 1 child of 11 and all I want is a cure. Would like to recommend a great site WOPG.org. It means Words of Peage Global and it is trully wondeful.

I've worked hard to raise money to help find a cure for ALL people with Type 1 Diabetes.

While, my cute little girl might be the one that melts hearts to help raise money today, the ADULTS with T1 are the ones who will be cured first.

We wait at the end of a long line of hard work, letter writing, and advocacy...but kids aren't the first ones approved for anything new. As a mother, I sit and watch as new stuff hits the market, but I have to wait for FDA approval for my CWD.

Does this stop me from trying...from doing anything I can to help raise money in this horrible economy?

No...it doesn't. I hope the adults with T1 don't give up either.

You don't have to be a kid to take a stand.

Thank you for raising your voice. If we all continue to raise our voices, somebody will have to eventually listen.

Kerri,

awesome blog! I totally relate and couldn't agree more with your feelings on the cure! I am still hopefull! Congrats on your A1c and your upcoming move!
Thanks again for all you do for us types 1s!

thank you so much kerri! i am passing this along to all my friends and family who have witnessed me low and commented on how 'normal' i seem. it's hard enough dealing with lows, but to be so practiced in 'managing' them that they seem like nothing to those around you, is incredibly frustrating and infuriating. thank you for speaking our truth.

It can look normal, but it does NOT feel normal. Like being drunk. Buzzy, and not quite able to finish that sentence. tHanks for sharing.

~Bethanne

Kids with diabetes grow up to be adults with diabetes. I think the adults get the shaft almost 100% of the time because they can take care of themselves. Kids with diabetes grow up to be adults who are well adjusted and happy despite diabetes, like Kerri seems to be, and I wish more people understood that not just kids need a cure. Adults may get more of the technology approved faster, but they usually have had diabetes longer. So wouldn't you want your grown up kid to finally get a break?

nice vlog post. I don't know how I missed it the first time you posted it but I'm glad I caught it this time.

thanks, kerri. your blog really helps me in dealing with this disease.

I have been a Type 1 for 42 years since the age of 8 and around the 6th grade my diabetes became very physically visible, so for me it has caused very low self esteem. I have suffered from Necrobiosis Lipoidica Diabeticorum. Here is a picture, though mine is not as severe it has caused me to not wear shorts or dresses and my life on the beach is a nightmare, but something that I have loved since childhood and do it anyway. So for me diabetes is very physically visible along with mental aspect of the disease.

http://www.aocd.org/skin/dermatologic_diseases/necrobiosis_lipoid.html

A. This made me cry.
B. This made me glad I am not the only one who feels exactly as you do.
xo

Your last sentence in your blog struck me. "Children with Diabetes grow up to be Adults with Diabetes . And all the while, were still ready for a progress. And for hope and a cure".

Feb 2010 will be my 37 D-Anniversary with Type 1. I am thankful that I have survived. I am frustrated that there is not a cure. It angers me I do not believe that there will be a cure in my lifetime and I will miss out on all the excitment. It excites me that there may be a cure in your lifetime and for children. I will have hope until the day that I die.

How many adult T1 teams are there walking with JDRF this year?

Like I said, I want a cure for ALL people with T1D.

Sure I will want my grown up kid to catch a break. In the meantime, I'd like to see ALL people with T1D who want a cure to be doing something to help the cause of funding one.

Wendy,

I've hosted a JDRF walk team for the last five years. And I'm doing one this year, too. And I am a - gulp - adult.

No one is calling your dedication to finding a cure into question. And I know that you aren't calling anyone else's dedication into question, either. And I also know that I wish kids with diabetes would be on the front line for new technologies and other developments, just as my mom wished that for me when I was growing up. Please don't forget that while I haven't been in your shoes as a parent, I have been in the shoes of your child.

There are some defensive comments spinning around in here. No need! For all of us living with type 1 diabetes, or taking care of someone who is diabetic, we're in this together.

The point of my post was to say that children with diabetes are deserving of a cure. I thought that when I myself was a young girl with diabetes. And I still think it now, as an adult. Nothing, for me, has changed. But the perception of people who look at adults and see the same need for a cure as they do in a child? That's what changes. Diabetes is an invisible disease, especially for adults who are self-managed and living out from under the care of their loving parents.

Wow Kerri,

Thanks for the post and video. I'm in tears because it is so hard and yet so "Invisible". You are so wise beyond your years! You amaze me!

Carolyn

Awesome post, Kerri! I don't know if you've ever felt this way, but I get REALLY pissed when I tell people I'm shaking/low and they a) look at me and say "Uhh, okay?" or b) pretend to convulse.

It's an invisible disease, but it doesn't make it any less serious. Here's to a cure in the hopefully near future!

If I'm not mistaken, it was a group of parents who took action and formed JDRF.

A bunch of the adults with T1 today were the cute kids that helped to get JDRF established yesterday.

I'm thrilled to know that there are millions of healthy adults who have grown up to live a normal life with T1.

It gives me the hope I need to face the long journey I have ahead of me.

As an adult with T1, you feel like it's invisible --thank goodness!!! Because if it wasn't invisible, it would proabably mean that you were facing a long strand of complications.

I live with diabetes every day of my life too.

Being the parent of a CWD is probably the most invisible feeling in the world.

Great post. And I agree with George's comment about D-Ray vision. I think of it as a "good complication" of diabetes - the ability to spot a pump tucked under a shirt or the little red dot on an overly tested finger. Invisible to most, but not to those of us on the "inside".

You. Go. Girl. Great post

WOW. I just caught this video about 4hrs to late. The reason I say this is that I, along with my sons diabetes nurse educator did a presentation at his school today. He was diagnosed 3yrs ago at age 9. I won't go into all the details about some of my struggles with the school system, I will however say that as a parent of a type 1 it is so hard to convey this exact message to other people.Of course the nurse and I went over all the basics, and I interjected how I know my son to respond to highs and lows, but this video hits it dead on. As his caregiver I see those signs you had, when no one else can. I wish I had seen this earlier I would have brought it and your post up on the computer. Anyway, I love your site. Keep blogging, it's not in vain

At that level there's no way I could even push a record button, let alone say what you did! Thanks for talking about what so many of us feel in varying degrees when we're low. Medical people often say 'you can live a normal life with diabetes'. That irks me to distraction. It's in no way, shape or form, normal. And yet, most of the time it's so invisible!

Thank you. As a mother of a 10-year old with type 1,I am very aware of when my son is "off." I appreciate your candor and applaud you.

I guess having D myself, I never thought to try to see what others see when I'm low - I only see the room spinning or going dark or feel the sickness or chest pain or sudden depression that comes with a low. I never really thought about what a low looks like to everyone else. I guess I do look normal. Diabetes truly is invisible.
I am very glad you posted the video of you while you were low. Don't be ashamed or fuss at yourself for making it. You are a wonderful lady and you did a wonderful job! I hope it can help raise some kind of awareness to others.

Wow...I feel the same way. It really does suck doesn't it. And professional say ohhh ur just depressed take this pill it will help...but the fact is...It won't help me because it can't make this horrible disease go away. And people really can't understand unless they have it...It Sucks. But I thought your blog was very good. We understand but other can not.

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