Even Saksham people need support.

The idea of a support group for diabetes started while I was working in Noida, I had my first group meeting there. Then after moving to Medanta, I have been struggling with executing the idea of group counseling in OPD, but lack of space and lots of patients in OPD, it becomes unmanageable. I have tried it many times, but has not been successful. The only way to do this was to dissociate it in space and time. So I started doing sessions on Sundays for type 1 diabetes and Thursdays for type 2 diabetes once a month. Type 2 diabetes group sessions were very effort intensive but I had given myself a year before I leave behind the idea which ultimately I did. I stopped trying to form groups to counsel.
There is so much ignorance, patients blame doctors don’t give time. But the paradox is my patients were not available when I wanted to have these workshops.
Anyways type 1 diabetes is a different issue, the impact of not understanding disease is life threatening. So whatever the response, we never gave ourselves the option of not doing it. And with time it was fun, there were many periods of disappointments. We still carried the meetings at regular intervals with sometimes 20 patients, sometimes 2.
Each time a patient sits in OPD with me, the problems are way beyond I can handle on my own. A 3 year old needs to start play school, a play school teacher needs to adapt to the workplace.
A young girl from small town with two broken engagements, complains of headaches. The diagnosis by the neurologist is depression. The first guy she was engaged to, convinced her to stop insulin, and she ended up in emergency weighing 10 kg less and gasping for life. Only if you were her you would understand why it was not difficult to convince her, marriage being the only redemption for being a girl that too with type 1 diabetes. I never happen to meet her parents, they never seem to have time to come with her to OPD. But this young girl has struggled through all these ups and downs, tried many vocational courses like dress designing and make up. It isn’t easy to get jobs, so she is back with her family and extended family in neighbourhood who never stop asking when she is getting married.
Another small town diffident girl with a beautiful smile always on her face, fortunate enough to get married. Family ensured that they stay very close to her because as soon as she is ill, she comes to her mayka. They take care of her treatment. An obedient wife and daughter in law, who works and cooks and waits for everyone to eat even if she is feeling a hypoglycaemic episode. She feels very obliged to her in laws to even complain. Complaints are not allowed in our culture, not from a good wife and daughter in law.
A brilliant young chartered accountant, confident and smart is doing very well in her job. I asked how is it that others face stigma while she doesn’t. She says because she doesn’t disclose! Simple. As per her, there is no way that you disclose and people will understand. They won’t! Clear hai like sprite!
I know these are issues which do not have easy solutions.
Then there is a father and son who walk in everytime with a dismissive look. The HbA1c is always 11%, while he is trying his best to do his best. Father puts all the onus of high HbA1c on his adolescent son, who is indisciplined in his diet. I do not know whom to counsel first father or son, but dreading the time when he starts kidney dysfunction.
I still can’t get out of mind a young boy with kidney failure, who was just too depressed to follow any treatment advise. Haven’t heard for many years from him, which I hope is not a bad news.
There’s a young boy whose father left the family, maybe the financial and psychological pressure of his son’s diabetes was too much to handle. The mother is now without any financial resources with two young school going lovely kids. I give them money. No this is not I say with pride but with some shame, because I try to ease my conscience by doing the easier thing- giving money.
There are few more whom we give insulins and glucostrips. But they disappear for months again to appear in a bad shape after stopping therapy. As I said giving money is the easy part. There are some really difficult issues we deal with here and that has to do with human psychology. The despair, loss of hope are deterrents to the rigorous discipline that is needed to manage type 1 diabetes. It’s easy to blame the patient for that and they become used to it, accumulating that blame within them for years.

Yesterday I saw another well managed patient, totally in control. I explained about Saksham and asked him if he wants to join the support group. His answer was- “Please clarify, if you are asking for my support or you are saying I need support!” I replied-“No its me who needs support!”

I NEED SUPPORT. Help me in my vision and dream.

(P.S. While going through my diary, discovered these notes and realized that I have been struggling but without giving up for a long time now.

31/12/14-
Last week I happened to see 5 patients with type 1 diabetes, of course all young 13 years to 30 years age group, unfortunately all poorly managed. As my wish for controlling them dominates me, my desperation to teach them, motivate them grows, also increases my frustration if they fail to monitor their blood glucose levels and do not turn up for their follow up visits. Only 2 of last 10 new patients turned up for a review! Have they given up on me? Worse still have I given up on myself? Probably not… The problem is not me, the problem is well I need to define the problem clearly before I try and find a solution!
23/01/14
Why do I depend on other people’s response to assess my ideas and beliefs? I believed so strongly in the cause of improving care in type 1 diabetes and find myself confused again. This is more to do with the happenings around me that changes attitudes within me. I do not know to what end these activities take me. I know I need to think long term, but without the milestones I am lost. There’s no one around to ask for direction, this path is not too often treaded upon and therefore I do not know whom to ask directions. But I cannot go back, I instead wait and watch for any sign on the way which might suggest I am taking the right way.
24/01/14-
When you have no enthusiasm left, borrow it.
When others have none left, lend it!)