Monday, 26 October 2015

Wrestling with Wisdom: Lessons I Have Learned About Dealing With Medical Issues


As a parent who has spent, on average, a minimum of two days every week for the past 6 years going to hospitals, doctors and specialists, I have learned some harsh truths and had some amazing moments of pure serendipity. Somewhere along the way, I picked up a bit of wisdom, though it tends to get lost again pretty quickly. So while I wrestle wisdom to the ground in a head-lock, here are some hard-earned insights I have scraped together that I think are worth talking about.


  • Medical appointments eat time, so take snacks and toys. This isn't new, as anyone stuck in a waiting room knows. But if you know you're going to be stuck with crabby babies, boisterous toddlers or inquisitive preschoolers, take a lot of food, and water, and anything that will stop them climbing the walls.
  • Treat hand washing seriously. When you enter a hospital, before your kids eat, and when you leave. Also, never ever eat in a hospital cafe - those things are germ vectors. 
  • Watch the height of automatic hand-sanitizers - those things are the right height for adults, but not for curious toddlers who like pressing buttons at eye-level. Yes, it's a barrel of laughs washing it out of eyes.
  • Child clinics are a blessing, as are play therapists, and doctors who keep crates of toys handy.
  • Take notes and write everything down. Ask for copies of ALL documentation, including referrals. 
  • Keep a filing system in place. Keep all the records together. It doesn't have to be neat.
  • Don't assume the staff will tell you everything that you need to know. 
  • Don't assume that a specialist or a hospital has your address (or any details) right - double and triple check that sucker. 
  • It's almost impossible to fix medical records when a big medical practice writes the wrong doctor on a form - or creates a fictional one. 
  • You may have the right to access your own or your kids medical records, but you'll probably have to climb through a mountain of bureaucratic paperwork that would make a Vogon recite ecstatic poetry to get it. It's easier to get your GP to get the information - as long as they're 'real'.
  • Specialists are almost always going to say they are 100% certain. Even when they're not. Even when it's outside their specialty. Except for the really good ones - the kind that are doing medical research on their specialization.  
  • Public hospitals attached to medical teaching universities usually have the best specialists for tricky and extremely rare medical conditions. 
  • A condition being non-degenerate doesn't mean it's going to be easy to handle.
  • Just because you like what a doctor has to say, it doesn't mean they're right.
  • Just because you don't like what a doctor has to say or the way they say it, it doesn't mean they're wrong.
  • ... But it doesn't mean they are right either. It does mean you will need to take time to get passed any emotional reaction to either the diagnosis or the way it was handled and accept that what they say is a real possibility and that it's not a bad or a good thing - just a different thing.
  • Most neurological differences have large overlaps in symptoms. If your child has range of symptoms they can have a range of diagnoses, depending on the specialists they visit. If a specialist tells you that your child definitely has Y, but not Z, ask how they can tell. A thorough and honest medico will be able to point out the symptoms that mean diagnosis Y ... and the symptoms that show it can't be diagnosis Z (and that's the important bit right there).
  • Your child is the same child with or without a label. Their problems won't vanish if you avoid getting a diagnosis just to avoid a 'label'. They just won't get the right treatment.
  • There is usually funding out there to help with treatment ... but you're going to struggle to find out what it is and how to access it in time. Always. (Our GP once commented that I was very thorough, but worried about parents of kids who couldn't follow the bureaucratic rabbit-trails and mazes. I worry too, to be honest. It's not easy stuff, don't kid yourself that it is.)
  • Claiming medical expenses and filling out diagnostic questionnaires involves hours of detailed analysis of your child's symptoms in excruciating detail. It's a rare form that doesn't make you feel like a 'bad' parent. Don't let it get you down. You're a good parent, and your child is awesome.
  • When talking to doctors, secretaries or anyone in medical-land it is best to be polite, even when you really want to scream ...
  • ... But being firm with people who are giving you a run-around is a-OK. 
  • Don't ever be afraid to ask for more information. Doctors and specialist sometimes forget that not everyone has a post-doctorate in medicine.
  • Most medical people are going to talk around your children and ask you detailed questions in front of them, whether you are comfortable with that or not. 
  • You can tell that your child has the right diagnosis when the treatment / therapy is working and continues to work over time.
  • Other parents in waiting rooms are genuine and wonderful ... if a little sleep-deprived and stressed. 
  • There are a lot of people and organisations out there that can help. But you have to know where to look. Other parents and random brochures in waiting rooms are probably your bet bet in finding what exists and how to access it. Everyone else is going to assume you already know.
  • If a doctor or bureaucrat gives you information ... find yourself a reputable website to back up what they have said. Medical journals are the best sources. But government health websites are a good place to start, as are most (but not all) large organisations that are set up to help families who are dealing with those particular conditions.
  • You want to do this because ... you're not going to take it all in at the appointment. This is doubly true if there is more than one specialist examining your kids at the same time, which happens at the big clinics.
  • Take a deep breath and realise that you are in it for the long-haul. This is not a quick-fix 'one operation/treatment and they're cured' kind of deal. 
  • Your children will start to expect that anytime you leave the house you are going to a doctors appointment. They won't be far wrong.
  • Your children will learn to navigate their world based on where the specialists are located.
  • Regular medical appointments eat time that other people's children spend doing things like ballet or sports. Don't kick yourself about never having time to 'do all the things'.
  • There will never be enough time or money to do all the treatments that will be recommended, particularly if your child has more than one special need / diagnosis. 
  • You will often have the unpleasant task of deciding which of the 'urgent must be dealt with ASAPs' you can handle at a time. 
  • It's OK to take a day off from doing things - sometimes your family will need time to be a family, and not an extension of the medical establishment.
  • After a while you will start to think that what your family deals with is 'kind of normal'. And it will be - for your family. 
  • ... but don't confuse normal with easy and then beat yourself up about not having a pinterest-worthy house, or gourmet dinners, or piles of fun extra-curriculars for your kids 'just waiting to go'.  People who don't spend ridiculous amounts of their time on medical stuff don't do this either ... and that's OK. 
  • Sometimes you'll just want to go hide in the closet and have a good cry. And that's OK too.
  • ...and lastly, remember that you are human, that you are not just there to facilitate the recommended treatments for your children. You need time to be you, even if it's only for a moment or two. When it all gets too much - find a way to have a break. If there's no one who can look after your kids for an hour or two, tag-team with your spouse, or with caring relatives or friends, or call up the organisations that are there to give you carers leave. That's their job. Me-time keeps everyone healthier. 
What wisdom have you wrestled out of reality lately? Let me know in the comments! I'd love to hear about them (no, really, I really, really would. I'm happy to skip the school of hard-knocks method of gaining insights whenever I can).

4 comments:

  1. Great list! I have one to add:

    Not every quirky behavior or affect is related to your child's condition-- sometimes your kid is just being your kid.

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    1. Yes! That is a great point! And it can be so hard to remember sometimes. It is so easy for me to slip into viewing everything through a diagnostic lens. I know I have to shake myself out of thinking that way every now and again. Such a good point!

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  2. "and the symptoms that show it can't be diagnosis Z (and that's the important bit right there)."
    And if the doctor rules out a condition because you didn't mention a symptom, and then refuses to believe you when you say you have that and just forgot to mention it, he's probably wrong about his conclusions too. That's what happened the first time I suggested I might have hypermobility.

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    Replies
    1. <3. Yes, that happens a lot with me too. My DH now gets me to write a list before I go into an appointment, as inevitably, I will forget symptoms. That must have been very frustrating.

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