One of my children is going through the diagnosis process for a hidden medical condition ... something that would NOT be obvious in an emergency, but could affect the situation as it unfolds.
It’s tough to know what to do. We’re at the early stages of diagnosis (and it was a long road to get here), and it seems like a never-ending process. It’s really heart-breaking that it takes so long, and some days it gets me down. We want to do the best for our child and need to get plugged into the support and resources that are out there. Now. The diagnosis will probably come, but we need to get some tips on making life easier today ... tomorrow ... next week.
I have started reaching out to some of the national charities in this area. I knew I would get high-quality advice, but was dismayed when I received an email auto-response that said they would come back to me within 21 working days. 21 working days ... really? I am having a meltdown TODAY.
It was with a big sense of relief that I attended a workshop last week on this condition area. It was a practical session that talked about how to get things working better at home. Everyone shared examples of what they were finding a challenge, and they gave some useful advice to try in each situation.
It was two hours away, and after a long day, I cried all of the way home. (Apologies to anyone who passed me on the motorway. That must have been a sight!) I have been trying to figure out why I was upset, and I think it’s just that you carry the stress of a long diagnosis on your shoulders every day. It’s not that any one day is terrible. But all of your days are harder. And for once it felt like there was a way forward. Some people to share my thoughts with, and hear their stories that didn’t make us feel alone.
That night, my child came to me and asked if it would be relevant to have a medical alert bracelet during diagnosis. We had already talked about having one if we received a full diagnosis. But what about now ... during this wait & investigation?
We sat down and had a talk about all of the positive reasons (which relate to communication troubles in an emergency situation), and my child wanting a bit more understanding from others in a tricky situation ... but also the fact that we didn’t want to jump the gun. We didn’t want to over-communicate something that could still turn out a “no”.
The right answer for us was to go ahead with an ID bracelet during diagnosis. No specific medical details, but with a name, and emergency contact details for both my husband and I. As the issue in an emergency would be around communication skills instead of a tricky medical situation, this seemed like a good middle ground. It gives us the confidence to know that our child is better protected when walking the dog, going for a run, or the long walks from school.
What is right for you? Should you get a medical alert bracelet during diagnosis? I think it depends on the condition, the likelihood that you will receive a diagnosis and the emergency medical issues. It is helpful to read up on the reasons why a medical alert bracelet would help with your condition. If these are hidden dangers that could have a major impact on your airway, breathing or circulation, it is better to be safe than sorry.
But it’s also important to communicate that the diagnosis is not confirmed. This of course depends on whether you have the room on a bracelet or necklace for longer text ... but a dog tag or a silicone band would give you the space you need. You could say “Possible XXX”, or “Undergoing diagnosis for XXX”.
In closing, I wish you well. Talk with your loved ones about whether a medical alert bracelet during diagnosis would help. But most of all, be gentle with yourself and keep looking for the help you need ... for you, and those around you. Take care.
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February 09, 2016
My little guy has an physically obvious reason that may warrant a medical alert bracelet but it’s the fact that he has very little expressive speech besides toddler sign language that we choose to have a bracelet for him. I know how difficult a diagnosis journey can be. Hugs to you and yours.