“I Do Not Need to Help Those with Diabetes”……A Conversation with an Interesting Takeaway.

whoaI had a great conversation with someone recently, during my travels, that was incredibly enlightening.  “Ed” was diagnosed when he was 22, he is now around 35.  He told me that his diabetes is in very good control and he wears an insulin pump and a cgm.

When speaking of my kids and my involvement, he stated that it was commendable at the level of our involvement and he stated that he really did not see the need to be involved with any diabetes charitable organization.  I saw this as an opportunity for me to learn.

I asked him why.

He stated that there was enough people out there doing what needed to get done.  His little push would not accelerate the research for a cure and the pharma companies will continue research and development as long as THEY THINK they can capture a bigger piece of the diabetes financial pie.

I asked him if he would allow me to ask a few blunt questions.  I made it clear that my tone would not be to challenge but to learn.  He said, “fire away”.

I stated if we all felt that way that nothing would get done to which he replied that someone would always feel the need to ‘do something’.   Life gave him a curve ball of which he was not very happy.  He shared that he spent his ‘diabetes time’ on how to best take care of himself which was a full-time job in itself.  If he learned, and learned enough to keep him healthy, he stated that should be enough to ask of one person.  It is a different perspective if you have it than if you have a loved one with it, he explained.

He was older when he was diagnosed.  He stated that if he was younger and watched as his parents did as many of us ‘did with the diabetes Charites’ we supported, he might feel differently.  But he didn’t and the focus, for him, has always been to take care of himself.   I asked him about ‘giving back’. 

(Here is where I listened very carefully)

He stated that he gives his money to (he named the) charity.  And he supports the same charity with time as well.  And a good deal of time.  He had a loved one with whom he was very close who was taken by that disease.  It had nothing to do with diabetes.

“I’ll be fine (with diabetes), they need more help than I do so I help them.”

I thanked him for his answers and I truly did not see the need to convince him otherwise.  He took care of himself, he gave to a cause that interest him, and he gave of himself.  When I asked him again about diabetes causes, he said that having the disease means he has to deal with it 24/7—-that was how he supported it.

Cure? Technology? Camps? Those less fortunate?  He stated that he would leave that for others who had/have a loved one with diabetes.  His emotions were only tied in diabetes to care for it in himself.  Which he does.

The discussion was enlightening.  The man took care of his diabetes; gave to the philanthropic cause of his choice and also gave time to the same charity.

As we parted ways, a voice inside told me that I had a problem with what I heard; but another voice stated that I don’t have a problem with what I heard. 

I ask you; as I do often, what do you think?  Please answer here by ‘replying-at-this-site’ so all can see (this gets posted in many different places).

I am a diabetes dad.

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29 replies on ““I Do Not Need to Help Those with Diabetes”……A Conversation with an Interesting Takeaway.”

We all give and help in different ways. For this gentleman he does not participate directly be donating his time or money to Diabetes organizations. But indirectly he does, we all do. By speaking with you and you blogging about the experience, indirectly he is giving back.
It doesn’t always have to be about giving money, raising money for a “cure” or volunteering at a camp. We give and help by sharing, education, support and encouragement and that may be with loved ones or total strangers.
This man may be helping many without even knowing.

Thanks for your take on the conversation Laura. It was a lesson for me……as I asked the question; ‘Why does it always have to be about diabetes?” For me (and others), perhaps it does; for others not so much. Thanks for taking the time to write.

Though diabetes is my “cause of choice” I completely see his side and applaud him for supporting something he believes in. Both of my parents died from hormonal cancers. Before my son was dx’d that was where my time and money went. Then my child, the one I carried, birthed, cared for, stayed up with all night, etc was diagnosed. THAT became my focus because losing my parents had not hurt as badly as having my child in the PICU with an incurable disease. I made my choice. I feel like (and this is a hypothetical) if *I* was the one with diabetes I would still be giving my time and money to cancer charities, because that would hurt me worse than anything that could happen to me. We all have our priorities based on how things affect our lives.

It is his choice and anyone else’s to pick the charity they support. Good for him. I also hope when a cure is found that all of the individuals who didn’t support financially or time wise (even if it was merely to advocate or raise awareness) are among the last to receive it. Sorry… it is my brutal and honest opinion.

I, like you Tom, originally felt that if you have diabetes in your life, whether yourself, in your household or be it a loved one, that diabetes is the area that you are supposed to support. But after his enlightening look on his “giving” of himself and his health, I, too, listened. I might not agree the full 100% but I respect his choice and his reasons. I do agree that he IS doing something even though he doesn’t think so directly. His good care is adding to statistics somewhere along the line, which is also assisting in documentation for future research. I still want a cure for my child, for friend’s children, for parents. But who am I to judge what someone else is choosing for their method of giving or giving back.

I did some fundraising a few years ago for the local JDRF walk and most of the donations came from people who already had a direct connection to diabetes. I found it uncomfortable to take money from people who already give so much for their loved ones.

I don’t believe anyone, even celebrities, “should” advocate. It is a very personal choice and should be made out of an honest desire to help in some way

I feel like with any person, advocacy begins with a personal connection. This man obviously feels a stronger personal connection to the charity he supports. I also agree with him that the donations and support will come whether or not he is personally involved. I started supporting JDRF when I met and became friends with a Type 1 Diabetic. We walked and volunteered together. Years passed and my son was diagnosed. BIGGER personal connection. In the meantime, I supported various charities that connected me to friends and relatives. Finally we went to Diabetes family camp! We connected with the counselors and their hard work and dedication to kids with Diabetes. Now we support camp. This Diabetic cares for himself and has the right to choose where and how to spend his time and money. I respect his honesty and openness. He isn’t denying his condition. He is in good Diabetes control. Good for him. Respect him, respect his choices. Don’t expect everyone to think alike! Thanks!

I can see it. While I do not have alot of time and money, I try to educate people around me about diabetes. It’s something that needs to be pushed. However, I do see this mans side too. He was not diagnosed as a child and was ‘that kid’ at school. He was diagnosed as an adult, where he already had his own life. I have lost a friend to CF and one of my closes friends lost her son to cancer. Diabetes (while very hard) is manageable, nobody is given a life expectancy. Yes, we do need to push for a cure, better treatment, better health care, but we (T1Ds) can do anything you can do.
I watched my friend gasp for breath, take so much medication, engage in a long therapy 3 times a day and tote around an air tank. All before she was 20. The Doctors gave her 2 years to live when she was 19, she was put on a transplant list for a double lung (which is near impossible to get) and just kept waiting. The steroids she was taking for her lungs ruined her pancreas, and she had to take insulin for the last year of her life (she was excited that we could do that together!). She dropped out of college, because it was too hard to walk around campus and she eventually could not take visitors, because of the germ risk. Through all this, she was so happy. Never down, always positive. And in the end, she left us, having only 20 years here.
I see both sides. I am a person with diabetes, so I see it different than a parent of a child with diabetes. But I think in order to understand, you sometimes have to see it all happening.

I think this is awesome. My T1 is my 10 year old daughter. We are rookies as she was just diagnosed this year in Feb. I donate what I can, every month to JDRF, I feel that organization is phenomenal and I want to support in finding a cure. Along with doing that my daughter is in the beginning stages in being am advocate for the American Diabetes Association, I felt it would be in her best interest to take something potentially negative and turn it into something positive, education is key. I feel hearing her story is way more powerful than mine, she is the one living with it, I can support her, but I am not diabetic. I hope there is a cure one day, I also hope that she can go forth in her life, even with it (and I know she will) I hope the skills she learns being an advocate, she takes with her, and utilizes them throughout her life. But I love what ‘Ed’ is doing, and I hope my daughter can take the same attitude. I don’t want her whole life revolving around this diagnosis, I think it’s important now, I think it’s helping her understand and deal with her diabetes, emotionally and physically, but I love thinking one day she’ll take this attitude. Let me and all those that love her worry about a cure, while she takes care of herself. It’s genius!!

Your words truly resonated with me. I give every waking hour to this cause and THAT IS MY choice. We all have choices and as I stated before that the most important decision is to just “Don’t Do Nothing”. It is up to each individual to define that the best way they can. Thanks for writing Tarren.

There are only so many hours in a day and so many dollars in our pocket. How we spend those resources requires us to make judgement calls. It sounds like he has decided he can live a good life WITH diabetes and has chosen to give of his time and money to help others with a condition he had judged to be worse. We could say it is a very non-selfish decision, himself to something that won’t benefit him directly. That’s not to say I believe anyone is selfishly working for a cure for diabetes—quite the opposite! It does seem like much of the support in the diabetes community comes from those who love a diabetic, instead of the diabetics themselves. Think about it; each walk team is a whole group (that represents even more people who donated funds and aren’t walking) that is there to support (usually) a single person with diabetes. It’s Love that makes the world go round and it’ll be love that funds the cure.

The people I’ve met, and the bonds i’ve formed while raising money for diabetes are priceless.
Although occasionally I wonder if it’s a bit selfish to raise funds for myself when i’m living a full life with this disease, yet there are other causes in which people aren’t as fortunate as us.

It is his choice, of course, but I think it’s a shame. I also ponder the question whether his view would ever change if, in the future, one of his children or grandchildren were diagnosed with T1?

Before our daughter was diagnosed, I’m sorry to say I knew next-to-nothing about Diabetes; T1 or T2, other than the stereo-typical “overweight & lazy / poor lifestyle choices / just take a couple of pills & it’s all sorted” kind of thing, so I did not consider giving time or money to any related cause (not that I actually remember seeing that many anyway). I supported a variety of charities, predominantly cancer related, because (probably like most other people) that is what had touched my life.

Now I live with, and understand T1, I would do anything to take it away from my beautiful baby girl, but I can’t, so I have to do what I can in the hope that others won’t have to go through the same experience. I feel guilty that I knew nothing about it (and if I had, our daughter would have been diagnosed much sooner), and am saddened by the lack of education, publicity and, consequently, support for it.

Because – with the exception of pre-diagnosis – our kids all look healthy / normal and appear to be just like any other kid, and are leading happy, active lives, those people not connected to it don’t appreciate just how challenging it is. They don’t look sick, so it can’t be too bad, right? It’s not a terminal disease, but it’s a life sentence of fighting an internal battle. Another post mentioned not being given a life expectancy. Maybe not in the form of “you only have a year to live”, but the moment my daughter’s diagnosis was made, her life expectancy dropped by 15 years. And not much is ever heard about the daily possibility of hypoglycaemia which could have fatal consequences…. You all know this, but others do not.

I have since become a strong advocate and fundraiser for T1, in addition to the other charities, which I still support (albeit less financially at times, as there are only so many $$ to go around!).

On one occasion, I had a table at our local shopping centre during JDRF’s Jelly Baby month. I stood and watched many people see my display and alter their path past the table, in order that they could give it as wide a berth as possible. They walked by, looking sideways at the big jelly babies pinned to the tablecloth and the beautiful, smiling picture of the young child who was the face of that year’s campaign. I believe (and I am making a big assumption here, but it is based on my perception of D, prior to dx), that they saw the word Diabetes and did not consider it worthy of their support. I spoke to each and every person who came up to my table to buy jelly babies or merchandise and every single one of them, EXCEPT 2 individuals, had a personal connection to Diabetes! Two people, who did not know what it is like to live with T1, were willing to help. Everyone else, just walked by.

So, it is down to those of us who know, and who live with it, to be the driving force of the fundraising for the research, because not many others know and understand and are therefore not willing to help.

I sense much thought went into what you wrote and I thank you for sharing a ‘voice from the trenches’. It is the two edged sword that we all deal with so often. They ‘look fine’ and how to share the story so our kids are not scared to death to live. I thank you for taking the time to write. Regards always.

I’m glad that he is managing his condition well but question the humanity of a person who can turn his back on the children diagnosed today. I view this as most likely a defense mechanism Ed uses to to maintain tight grip on his emotions. Advocacy to something so close to your heart is very emotional. I feel Ed likely avoids diabetes advocacy because it is simply to hard for him to deal with. I don’t fault him for not being strong enough to advocate for a cure. I do feel since he handles his condition “so well” Ed should be the very last person to receive the cure when it hits the market. In truth I have to question why Ed feels his cavalier attitude needs to be spread? Its certainly not helping the cause.

Well he did not know I was going to write about it. It was a conversation and the more I thought about it, the more I grappled with different outcomes in my own thought process which IS WHY I wrote about it. Seeing the various responses, including yours, is as eye opening as the original conversation itself.

Thanks for writing.

Mark… I agree!! I am thankful that anyone has put T 1 on their priority list or we wouldn’t have the pump or cgm. Thank goodness everyone didnt just sit around saying eh it’s not so bad. Let’s find a cure already!!!

I have read your blog on this topic and the replies, I must say that I am amazed at what some have said. I am type 2 diabetic, my mother and brother also are plus I had 2 aunts that were Type 1. Having said that, I would like to reply to the blog and replies. There are many worthy causes in this world of medical problems. Heart disease, CF, lung disease, MS, cancers and diabetes to name a few. Many people are afflicted by one or more of these. It is sad to think that if you do not give time or money to a charity that you should be at the end of the line for a possible cure. If everyone gave to only one charity or cause, then what happens to those who have other diseases? And what of the people who have more than one condition. I believe as long as you give or support something to the best of your ability, should be all that is needed. Not all of us can give money, not all of us have time to give. Should those who give more get more consideration when a new treatment or cure comes along? Ed should be commended for giving even if it was not to a diabetic cause. It is the people who are passionate about what they are fighter for, that will create the answers needed to destroy disease. I thank God for all those fighters that make my life better and easier.

It may be hard (especially for diabetes fanatics) to understand, but when you break it down it is sure easy to accept. I do a lot with diabetes because it hits home the hardest. But I also engage in other awareness and fundraising causes that do not support diabetes because of individuals I care about who are affected by them.

I think what he’s doing is commendable. He selected his charity of choice, it didn’t select him (as is the case with many of us). To me, that indicates an even stronger passion toward what he does, and the wish to benefit the “greater good” – those who need it more than he does.

Everyone can’t be a champion for every cause. He picked one which he feels can really benefit from his contributions. Good for him.

I can see where he is coming from because my son feels that 24/7 is in fact often too much for him to deal with. Where I disagree is that there is enough going on to raise money for diabetes charities and that his bit would make no difference. Any $1 could be THE $1 that pays for the cure. So I gather as many of those as I can and give them where I hope will do the most good. It is entirely possible that there are many charities that do not have the same goals for diabetes but I am not so jaded to believe that most are not altruistic enough to want the cure and better treatments until it gets to us. Just because some bad comes with much good is no reason to give up on the good. I wonder if he would feel the same if he couldn’t afford the diabetic supplies, insulin and cgm he has to help him with his diabetes and had to rely on charity to get them.

JIC people are curious I have other health conditions as do my son with type 1 and my husband. I do what I can but chose to concentrate on one so that I am not completely overwhelmed. Once the cure for type 1 is here, no doubt I will switch to the next relate-able condition. I’m glad that anyone cares enough to find a cause and do what they can for it.

Tom, we are all different and handle situations differently. It was nice that you took time to here him out. I would have taken the opportunity to introduce him the BioHub as well as the DRI because many are not aware or know what amazing work is being done there.

My parents always told me “The squeaky wheel gets the oil.” I greatly appreciate his willingness to help for that is enough for if we all do that the government is going to find it very difficult to ignore 3.5 million “squeaky wheels”.

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