I once again reiterate the story of Mitchell Jacobs and Britanny Gilleland, who has been living with type 1 diabetes for over 14 years. Even during their courtship Mitchell was able to see the frequent challenges Britanny had to undergo. He stood by her and undertook the responsibility of diabetes management along with her. Which is what any compassionate person would do. Since they did not have insurance, he went to the point of picking up discarded pieces of furniture, renovating them and selling them for extra income, and lived in a trailer with her because they were evicted as they had gone back on payments of their bills. Today they have three children and are in a better place in life.
For any committed relationship to work, qualities such as trust, respect, and understanding, working together as a team, cooperation, communication and adjustments are important. When a couple works as a unit, confronting challenges in unison , savoring the fruits of their labor together and thinking for each other, creating a family culture based on transparent communication, love, respect and kindness, no impediment will be able to stop them from achieving their dreams.
When one partner has T1D, the dynamics of the relationship changes because you are already starting your lives together with certain challenges. Not only does diabetes management demand time, money and attention, but there are challenges such as insecurities with regard to possibilities of hypoglycemic episodes, emotional upheavals, social implications, and in case the T1D person is a woman, changes associated with hormonal fluctuations on a monthly basis. Type 1 diabetes tends to become a big part of the couple’s life.
According to ‘Type 1 Diabetes and Committed Relationships’ published by JDRF there are key tools to improve relationship and diabetes management:
- Cooperation and Communication
Sometimes managing diabetes has to be a team effort and at other times, the T1D partner has to be given space to independently handle situations associated with diabetes. Clear communication and mutual understanding paves way for a stronger bond and makes diabetes management easier. The non-diabetic partner should be empathetic about mood swings due to sugar fluctuations. When sugars become low, and sometimes has been consistently high, the T1D partner may exhibit anger, disorientation, confusion and other emotional outbursts. The partner has to understand and both should evolve a mature way of handling misunderstandings and arguments.
As with all committed relationships, making adjustments and occasional compromises are important for both partners. It is important to dispel any feelings in the non-diabetic partner that they are the ones making more compromises than the T1D spouse/partner. Open channels of communication and constructive conversations with each other will be help the couple find a balance. It is important for the non-diabetic partner to make allowances for mood swings and sugar imbalance related behavior, because this is something the T1D partner cannot help.
- Putting It All Together
Acceptance of diabetes management as a part and parcel of the couple’s lives is important for a healthy relationship. Denial by any one partner will result in conflict situations. The partner should be always there for the T1D spouse/partner and must be willing to help the T1D person along the way. This is not always easy but when a couple is motivated enough to work on their relationship with an open mind, everything will fall in place.
- Note to Partners of Persons with Type 1 Diabetes
:Be supportive and be patient. Educate yourself by asking questions about things you don’t understand and consider getting involved in communities where others talk about and discuss type 1 diabetes. This is a very personal condition, but at the same time, it’s tough to live with it alone. Make sure you are there to help and support, not to become overly critical of your partner – even if they are facing difficulties with disease management.
The JDRF paper concludes with a message that a strong sense of self, combined with an honest and supportive relationship makes all facets of diabetes management easier.
The community in which the T1D child and the family live comprises chiefly all persons who are in close contact with the T1D child. That includes primarily, the school comprising teachers, counselors, other staff members, classmates and close friends at school apart from any medical professional who is associated with the school. It also includes those who take tuitions, or conduct classes such as dance, music, sports coaches, and all activities the T1D child is involved in.
It is the foremost duty of the parents of the T1D child to inform the school authorities about the condition of the child and educate the teachers who handle the child on how to help the child through school days, by allowing breaks for water and the loo from time to time, enlist the support of the school during exams, giving them breaks when necessary and extended time to accommodate the breaks. Parents must be in touch with the school counselors to handle the emotional needs of their T1D child and any emotional upheaval, not just due to sugar fluctuations but any instances of bullying or ridicule by children who don’t understand their child’s needs. It would be ideal if the school counselor is able to offer some time for the T1D child and also help in spreading awareness to the class teachers and others in the school.
During our daughter’s schooling she was constantly ridiculed by her class boys for eating frequently. She was not allowed to participate in games or go on trips. Such instances can be avoided if the teachers are educated about the condition. Also, if the child has good friends, they can also be educated about help when the child seems confused, disoriented or even becomes unconscious due to low sugar levels. It is also advisable to have the sibling also study in the same school if possible so that the T1D child has an ally and a person who is ready to help unconditionally, in times of need.
Every other person who is in touch with the T1D child through tuitions, coaching classes etc., must be informed about the condition and educated on how to handle episodes of hypoglycemia as well as allowances of time and effort necessary for the activity , based on the child’s needs.
Next to the parents and siblings, the most important persons in the T1D’s child are the doctors who play a major role in their diabetes management. Parents must create a culture of regular visits to the doctors and pay heed to their advice. It is important to maintain systematic records of blood sugar levels and present them to the doctor. The parents, the child and the doctor should together discuss and make adjustments in the insulin doses, food and activities of the child for maintaining near perfect sugar levels. The doctors should be updated about any new activity the child will be involved in, trips, stay-overs, parties etc. Regular, complete blood check-ups are important apart from an annual check-up of all other parameters, especially the eye, feet and teeth.
Hospitals like Dr. Mohan’s has a dedicated dieticians’ team who offer consultations on diet based on the child’s age, preferences and taste, activity level, sugar levels etc. They also have a dedicated counselor and support groups who offer additional support to improve the mental health of T1D children, inspiring them to lead their live with a positive outlook and focus on their health and happiness. Dr. Mohan’s Diabetes Specialities Centre has branches across over the country, following the same format and services that their main centre offers to patients across India and the world.
India needs more such dedicated centres, especially in rural and semi-urban areas where such facilities are woefully lacking.
Note: In this series, I will be putting down facts and events that have happened to me as a matter of fact. Anything I say in these articles is based on my own understanding and experiences and not on any scientific research. I would also like to mention here that I would be drawing upon those experiences of my eventful life, which I believe are relevant to the discussion of the emergence of autoimmune conditions in my child, who we think is different from many other children. I will be trying to make it as relevant to parents of T1D children as possible, but with a plea not to infer anything, compare or follow any of the practices we as a family followed. Simply because, every family is different, every child is different and so are circumstances. The takeaway should be confined to the existence of various possibilities, opportunities and a positive approach toward creating a fulfilling life for your child