As a parent, you know full well when there’s ‘something going on’ for your child or teenager. You may not really know what you are dealing with, but you can tell that something just isn’t quite right (beyond the usual concerns that parents have about a whole array of issues that often just come and go). Waiting for a diagnosis, if one ever comes, can be agnonising.
Limboland
In the ‘Time for You’ groups that I help to run, we call this place Limboland. There seems to be lots of going round in circles, hospital appointments, having conversations with the school, filling in extremely long, extremely complex forms that don’t seem to have space for the bit that really needs to be said. Is anyone listening to what you say? Hello? Anyone out there?!
And some days it’s just too much. It can feel like you’re running on empty, flailing around with your head just above the water. The washing up is piling up at the sink and you can’t get to the sink anyway because there are 3 baskets of laundry waiting to go into the machine. And it’s raining so the washing won’t dry. And the other Mums seem to have it wrapped – they’re going off to the gym! Having a coffee with friends afterwards! No washing up in their sinks.
Being in the place in between, the limboland of trying to get support for your child, can be absolutely overwhelming and exhausting. Waiting for a diagnosis can be one of the most difficult things for parents to cope with. The uncertainty can make you feel like you don’t have an anchor. The prolonged wait can lead to worsening symptoms for your child, which can be agonising to watch. You might even suspect a life-changing diagnosis that will radically affect the future for the whole family.
The kind of emotions you might feel
Of course, no two situations are the same, and there will be so many nuances to your situation. But these are some common emotions that others have felt whilst waiting for a diagnosis.
- Frustration – frustration is a feeling of being blocked or held back. Whilst waiting for appointments with professionals, you may well start to feel frustrated with all sorts of other things in your life. Small irritations over things like forgetting to buy the milk can quickly send you over the edge.
- Anger – The frustration and impatience with being in Limboland, can lead to bubbling up of anger towards health professionals or day to day family interactions. Sometimes anger can be channeled into advocacy, but that can be tough when day-to-day life is so challenging.
- Anxiety – when there is uncertainty, our brain likes to ‘close the loops’ and makes up all kinds of scenarios. Anxiety is a normal response to the feeling of being threatened. It is part of the fight or flight reaction designed to protect us from danger. Here the anxiety is coming from our thoughts yet we can also feel anxiety in our bodies. It can be hard to make simple decisions such as what to have for tea when we are preoccupied in this way.
- Sadness – It can be very hard sometimes to tell if you are dealing with normal sadness in response to being in a very difficult situation or if you are depressed. You may find you are more tearful than usual, or you might feel hopeless about your situation. Never be afraid to ask for help. So many people feel this way when the wait for a diagnosis is so long.
- Overwhelm – Feeling like you have no control over the situation can lead to a sense of being overwhelmed.
What can help?
We cannot control what happens to us but we can control how we react to the situations by how we treat ourselves in the moments when things don’t go to plan. Start to recognise when the emotions outlined above crop up. Don’t ignore them. Ask yourself ‘how can I care for myself in this moment?’
Looking for ways to connect with others who may be going through similar things can be helpful. Often, just being able to hear from someone who has felt the same things can remind you that even though you are waiting alone, you are not alone.
Emotional Support
When my son was born we had a few years of Limboland, I have been in this place and still sometimes have one foot there. We experienced many waits for tests, various diagnoses, and a huge amount of uncertainty. This is why I retrained to be a Counsellor to work with other parents in this type of situation.
I am working to put in some support for people in similar situations – support that I couldn’t find when I needed it. As a Counsellor I can’t give you a diagnosis for your child or fix your situation. However, if you feel ready to share your story with me, I will hold your words tenderly. Together we will find ways to help you navigate your new pathway, and find ways to support yourself in this ‘place in between’.
