Battling the biggest monster

Imagine your child has an incurable disease and to keep themselves alive they need to inject medication at least four times a day.  Now imagine their need for the medication changes each time according to how much they eat or run around; according to the weather, if they are coming down with a bug, excitement, amount of sleep.  And a little bit too much of that medication could kill them.  Your child pricks their finger to bleed a little at least 10 times a day to keep on track: you wake them at 3 am every night as it’s the time they’re most likely to need urgent treatment.  You do this everyday because the condition won’t improve or stabilise.  This micromanagement is for life, and coma or death could result from you relaxing for a day.

You are imagining the life of a Type 1 Diabetic and their carer.

Now imagine their condition – an autoimmune disease with no known cause – has the same name as a different disease, connected to obesity.  Imagine everyday headlines say obesity and sugar consumption are causing their disease and the burden it places on the NHS.  Imagine sugary drinks and sweets are part of the medication your child needs to prevent themselves from going into a coma or dying.

You are imagining the life of a Type 1 Diabetic and their carer.

Imagine even GPs and dentists confuse the two conditions and that you regularly have to fight with them for the kit your child requires to stay alive.  That media attention on obesity and Type 2 Diabetes not only stigmatises your child, but diverts attention away from the cure that you so hope for.

You are imagining the life of a Type 1 Diabetic and their carer.

Now imagine your child can expect to live until beyond pension age, can do most jobs, can go to university, have a family, play professional sports, drive a car.  Your job as a parent is to get them ready for a full and rewarding life.  You just have to prepare them to take on the hourly challenges of keeping themselves alive alongside this.

This is our life and the life of around 30,000 other families in the UK.  Other families deal with other health problems, some more serious.  We don’t have the monopoly on stigma, misunderstanding and intensive self-management. But we do have to contend with some of the worst media misrepresentation, day in, day out.  We have to arm our T1 warriors to deal with the effect of headlines, even as we arm them to take on the world saving their own lives day to day, hour to hour.

11807521_10153960212468973_5704700981744209976_oI imagine a world where our voices are heard.  Where it’s not too complicated or difficult to distinguish between two different conditions.  Where our amazing children can be allowed to get on with the business of living their lives and managing their conditions without battling the biggest monster of all.  Ignorance.

Thank you to Ed Damiano in his Ted Talk who inspired the first paragraph of this post.

2 thoughts on “Battling the biggest monster

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  1. Reblogged this on FranciscanMom and commented:
    It’s Diabetes Awareness Month, and here’s a don’t-miss post from a mom of a newly-diagnosed child in the UK. Learn the signs. Learn why Type 1 Diabetes is different from Type 2. And keep us all in your prayers.

    Liked by 1 person

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