Type 1 Diabetes NOW

Recently, we had several young people with type 1 diabetes in a row, who came from a long distance to make their first visit to our Diabetes Center in Tokyo for consultation.
They seemed to be at a loss about what to do as well as about blood glucose control. They know how to inject insulin and measure blood glucose levels. However, they do not know what it means to them or how they can lower glucose levels. They do not know what “blood glucose control” means in the first place. They seemed to be confused by all of these things.
Once patients go past the age of 20 or so, even when they try to share with their parents what they are facing, the parents may not be too enthusiastic about listening to them saying something like “That is what you have to deal with”. They also feel embarrassed about sharing their inner feelings with their parents and are reluctant to tell parents that they are having a hard time.
“While in hospital, nurses and all other people did understand what I was going through….” There are many patients spending their days feeling this way.

Anticipate somewhat and ask questions?
As I see such patients at our outpatient clinic, I feel that they are choosing their words for some reason when speaking. They are having a difficult time controlling their blood glucose levels. If I ask the name of insulin or blood glucose meter they use, they can only answer “That, that one.” All of these tell me that they are at a loss as to how to position “their self with diabetes.”
In these cases, I anticipate somewhat and ask questions such as “Aren’t you experiencing something like …?” and “Don’t you feel …?” Then, they give me surprised look, and oftentimes a lively conversation is triggered.
To female patients, I may ask “You end up eating even if you don’t want to eat, don’t you? Don’t you have such experience?” They may not answer but give me a nod. Then, I tell them,”I am going to speak for your feelings. If you find it different from your feelings, please tell me so.” And I carry on talking. When I ask them, “Did I say anything not right?” at the end, they shake their head, which tells me that what I anticipated and spoke for them agreed with their feelings.
Where there is a huge rock right in front of our eyes blocking our way, we tend to think “There is no way. I am helpless.” We do not even try to find if there is a way out somewhere and simply give up right away. Then, in order to calm our feelings, we eat our fill even if we do not want to. Things like this could often happen. We may sometimes turn to other things too.

Why can I do this?
How come can I speak for our patients as described above? It is because there are many patients who face such internal struggle and we at Tokyo Women’s Medical University Diabetes Center have many opportunities to hear their stories at their first visit.
Yes, not only you but many others like you suffer from similar problems. They are all worried about what will happen to them while being on insulin as they do not have anyone with more experience around who they can turn to.
Whether you have a role model around or not makes a big difference. A role model is a person you wan to be like. For example, let’s suppose that there is a senior worker at your company who is charming, high-powered, fluent in English and cool. You aspire to become like her and start making efforts to achieve that goal. In this case, this senior worker at your company is your role model.

Step before finding a role model
Those who have a role model are in good hands. However, for patients who cannot bring themselves to try to find a role model or are completely in the dark about how to live with diabetes, Tokyo Women’s Medical University Diabetes Center has held group meetings led by Dr. Saito for as many as 16 years.
Even those who are not patients of our Diabetes Center or who live far away have come to attend the group meetings. Yet, it has been probably difficult for some people to participate since we held them only on the second Saturday of the month. We were, however, able to plan such group meetings on Sundays though only several times a year thanks to support of people from various areas.

Have health care providers also attend group meetings
As I go to various places to give lectures, I often meet health care providers who say that they do not know what young diabetes patients are thinking or what they feel since they have no such young patients at the clinic or hospital they work for.
This is probably true. As I mentioned earlier, I can anticipate and ask my patients questions because I get to see many patients who experience similar problems. I can do that not because of theory or better understanding but only because of the experience.
Therefore, I am planning to have health care providers also attend our group meetings we are trying to start. If the meetings give them a chance to realize “These are what young patients with diabetes are thinking!” I would be very happy.
Those who have lived long enough are able to consider consequences of poor blood glucose control such as development of complications and impact on their families or job. However, young patients, even if they can think the same way, are not able to go far enough to think that they should lower blood glucose levels.
Through the group meetings, we want to learn more about young patients who tend to be swayed by emotions and want to wrack our brains with them about how they can handle their problems.

Recruiting attendees for
the 1st Group Meeting with Young Diabetes Patients
Date & Time: 11:00 am to 15:00 pm on Sunday, November 23, 2008 (already finished)

the 2nd Group Meeting with Young Diabetes Patients
Date & Time: 11:00 am to 15:00 pm on Friday(holiday), March 20, 2009 (already finished)

the 3rd Group Meeting with Young Diabetes Patients
Date & Time: 11:00 am to 15:00 pm on Sunday, June 21, 2009 (already finished)

the 4th Group Meeting with Young Diabetes Patients
Date & Time: 11:00 am to 15:00 pm on Wednesday (holiday), September 23, 2009 (already finished)

the 5th Group Meeting with Young Diabetes Patients
Date & Time: 11:00 am to 15:00 pm on Sunday, November 22, 2009 (already finished)

the 6th Group Meeting with Young Diabetes Patients
Date & Time: 11:00 am to 15:00 pm on Monday (holiday), March 22, 2010(already finished)

the 7th Group Meeting with Young Diabetes Patients
Date & Time: 11:00 am to 15:00 pm on Sunday, June 20, 2010(already finished)

the 8th Group Meeting with Young Diabetes Patients
Date & Time: 11:00 am to 15:00 pm on Sunday, September 12, 2010(already finished)

the 9th Group Meeting with Young Diabetes Patients
Date & Time: 11:00 am to 15:00 pm on Tuesday (holiday), November 23, 2010(already finished)

the 10th Group Meeting with Young Diabetes Patients
Date & Time: 11:00 am to 15:00 pm on Monday (holiday), March 21, 2011
(stoped by theEast Japan great earthquake)

the 11th Group Meeting with Young Diabetes Patients
Date & Time: 11:00 am to 15:00 pm on Sunday, June 19, 2011(already finished)

the 12th Group Meeting with Young Diabetes Patients
Date & Time: 11:00 am to 15:00 pm on Sunday, October 2, 2011(already finished)

the 13th Group Meeting with Young Diabetes Patients
Date & Time: 11:00 am to 15:00 pm on Wednesday(holiday), November 23, 2011(already finished)

the 14th Group Meeting with Young Diabetes Patients
Date & Time: 11:00 am to 15:00 pm on Sunday, March 18, 2012(already finished)

the 15th Group Meeting with Young Diabetes Patients
Date & Time: 11:00 am to 15:00 pm on Sunday, June 16, 2012

the 16th Group Meeting with Young Diabetes Patients
Date & Time: 11:00 am to 15:00 pm on Sunday, September 16, 2012

the 17th Group Meeting with Young Diabetes Patients
Date & Time: 11:00 am to 15:00 pm on Sunday, November 11, 2012

Venue: Johnson & Johnson Diabetes Institute
Sumitomo Fudosan Kudan Building 15th floor,
1-8-10 Kudan Kita, Chiyoda-ku Tokyo 102-0073

Recruiting: 20 young diabetes patients (teens or older)
15 health care providers involved in treatment of type 1 diabetes

>> For more details, visit http://www.dm-net.co.jp/gm/02/

©2008 Yasuko Uchigata

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悩んでいる自分はおかしい？

　最近も、遠方から東京の私どもの糖尿病センターに、初診の若い1型糖尿病の方が数名たてつづけに来られ診察を受けました。
　血糖コントロールもさることながら、なにをどうしていいのか、分からなくなっているというのが本音のようでした。注射は打てる、血糖値も測定できる、しかし、それがどういうことなのか、どういうふうにすれば血糖値を下げることができるのか、そもそも「血糖コントロール」と言うけれどそれはどういう意味なのか、なにもかにも、ゴチャゴチャになっているという感じでした。

　20歳も過ぎれば、親に話しても「自分のことなんだから」といってノッテこないし、親に自分の心の中まで話すことにはもうテレがある。「うまくいっていない」ということを親に言うことすら嫌だし・・・。
　「入院中は、看護師さんをはじめ、皆分かってくれていたのに」と心の晴れない日々を送っていたという方が多いのです。 　外来の診察室で、なんとなく言葉を選んで話す様子に加え、血糖コントロールがうまくいっていないことや、自分の使っているインスリン製剤の名前や血糖自己測定器の名前などを聞いても「あれです、あれ」という答えしかできないなどなどから、「糖尿病のある自分」の身の置き場所に困っている様子が分かります。

　そういうときはすこし先走って、「こんなことがあるのでは？」「・・・な気持ちにならない？」と聞いてみます。すると、「ええっ」という顔とともに、それをきっかけに話しがはずんでくることがよくあります。
　女性だったら「食べたくないのに食べてしまうのよね。そういうことがあったりする？」と聞いてみます。返事はなくても、うなずいてくれます。それなら、「これからあなたの気持ちを代弁して話すから、違っていたら、違うといってね」と、どんどん私は話していきます。「どう間違いがあった？」と最後に聞くと、頭を横に振ってくれます。こちらが先走って話したことが合っていたようですね。
　自分の正面に大きな岩があると、「もうだめだ、自分はだめなんだ」と思ってしまう。どこかに細い道でもないかと探すこともせずにすぐあきらめてしまう。そして、自分の気持ちを静めるために、欲しくもないのにお腹いっぱい食べてしまう。よくあることです。ほかのことに走ることもあります。 　どうしてこんな代弁をできるのでしょうか。それは、このような気持ちで悩んでいる方がとても多く、東京女子医科大学糖尿病センターの初診で、私どもがお話しを聞く機会が多いからです。
　そうなんです。あなただけでなく、たくさんのお友達が同じことで悩んでいるのです。インスリン注射している自分はこれからどうなるのか、身近に先輩もいないし。

　近くに、ロールモデルになる方がいるのといないのでは、とても違いますね。ロールモデルというのは、あなたがあの人のようになりたい！！と思う方です。会社の先輩に素敵な方がいて、仕事がバリバリできて、英語もできて、カッコいいとします。あなたは、その方に憧れて、あんなふうになりたいと思って、努力し始めるとしましょう。この先輩はあなたのロールモデルなのですね。 　ロールモデルをもっている方はもう大丈夫なのですね。そこまでも気持ちが行かない、糖尿病とどうやって暮らしていけばいいのか、まったくかいもく分からないという方に、グループミーティングを、東京女子医科大学糖尿病センターでは、長らく16年もの間、チャプレン斉藤先生を中心に行ってきました。

　東京女子医科大学糖尿病センターに受診していない方も、たとえ遠方であっても、グループミーティングに参加してくれていました。しかし、第2土曜日にしか行っていないために、なかなか参加しにくい方がいらっしゃったのではないかと考え、このたび、年に数回ではありますが、日曜日にグループミーティングを始めてみようと各方面の方々のご尽力を得て、企画することができました。 　いろいろなところに講演に行きますと、若い糖尿病患者さんが勤務先のクリニックや病院にいなくて、若い患者さんの気持ちやなにを考えているのかよく分からない、という医療従事者の方々の声をよく耳にします。
　これはほんとうでしょう。さきほど書きましたように、先走って「こうでしょう？」と私が言えるのは、多くの同じ悩みをかかえた患者さんにお会いしているからなのです。リクツ、理解ではありません。経験のみ。

　そこで、今度始めてみようとしていますグループミーティングには、医療従事者の皆さんにも参加いただこうと考えております。「糖尿病をもつ若者はこんなことを考えているのか！」と知っていただくだけでも幸甚です。
　人生半ばまで生きてきた方なら、こんな悪い血糖コントロールをしていたら合併症になる、なったら家族が！仕事が！とその先のことをすぐ考えることができるのですが、若い方はたとえそのように考えることができても、そうなら血糖を下げよう！というふうには、考えが結びついていきません。
　考えが感情で揺り動かされている若者を知り、そしてどうやっていったらいいのか、を一緒に悩んでみたいと思います。