Imagine this. You, your child or another family member have recently been very ill. To use an idiomatic expression, it has ‘knocked you for six’. The illness took you by surprise and changed your everyday routine maybe for months on end. It may feel like you don’t have much control anymore and things are so uncertain. You wonder if you will ever be able to get back to how things were before the illness or injury struck.
In the midst of it all, you don’t know anyone else going through this experience. People provide sympathy, well wishes and possibly even some practical help. You may even have a pretty good team of medical and healthcare professionals and a supportive family. This is all good; you are thankful for their contribution. Yet you feel alone, sometimes achingly alone.
Ach, this can hurt. Being the only person in your situation among the people you are with every day can be very isolating. Other than the medical professionals, you have no one to speak to double check what you are experiencing, to make sense of it, to find out if it is normal or not, and you have so many questions. This may be on top of feeling worried, scared, maybe tearful and just not yourself.
First off, let me reassure you that these feelings and the questions you have are normal. You are not crazy. Far from it. I come across people feeling like this all the time in coaching and my volunteer work at the Transverse Myelitis Society. You have a LOT on and it’s COMPLETELY NORMAL to feel the way that you do.
You may still be questioning that. So let me share the one thing you can do to help reduce the anxiety you are feeling and restore a sense of calm and control.
Reach out for support
The very real importance and value of reaching out for support was reinforced this past weekend where, after months of planning and organising, I hosted the Transverse Myelitis Society’s second ever Family Weekend. This event was for 15 families who have a child with a rare neurological inflammatory condition. These families, and their children, have been in your situation, feeling very alone in their experience. Yet they learned that reaching out and finding others like them is helping immensely in the recovery process, even if the onset of the disorder occurred some years ago.
This is what happens when you find people like you who have had a similar experience.
- You get the confirmation that your experience is normal. That is so reassuring.
- Reassurance calms our worries and anxiety. We feel relief.
- We can ask our questions. We learn the coping strategies other people use. We can get recommendations of good medical specialists. We find out about therapies that may help.
- The energy which was going towards worry and anxiety can now go towards implementing everything we have learned to help in our recovery.
- We now feel a greater sense of control. We now know we are not alone, that there are others like us. We feel we belong somewhere. We feel a bit more normal again.
This is such a positive virtuous cycle.
But does needing support mean I’m needy?
Worrying about being seen as needy in a not-so-great way, people saying no, feeling too dependent on others, or feeling guilty for imposing can be very real concerns when you are thinking of reaching out to others for support and help. Think of it this way. When we are going through something new and difficult, like a serious illness or injury, we do not have the answers. It can also be difficult or impossible to do everything ourselves. You don’t know what you don’t know. Reaching out for support is a way to obtain some answers and help in achieving what we want for ourselves. It is also a way of taking control, which is very empowering.
So what happened at the TM Society Family Weekend?
Children, young people and parents met others on the same journey. Families participated in challenging outdoor activities; working together and having fun as a family was reinforced. Parents asked questions of medical and healthcare professionals and learned the issues other families were experiencing and how they were handling them. Children rocked their wheelchairs (literally) to music during the disco. They played, swam, ran or rolled, and had fun together. Parents socialised and shared experiences. We all cheered when we learned Gordon Reid won the inaugural wheelchair tennis championship at Wimbledon. (He had Transverse Myelitis at the age of 12.)
A common theme in what the parents said about the weekend was, ‘It’s so good to know you are not alone.’
There is strength in numbers.
What’s it like for you?
What kind of support has aided your recovery? How did you learn about it? What would you recommend to someone who was hesitant about seeking support?
If this blog has sparked something inside you and you would like to explore how you can reinvent yourself, have a look at how we can work together and get in touch for a free no obligation consultation.
Pass it forward
Although these blogs are written in the context of living with serious illness or a chronic condition, the ideas contained within are applicable to everyone. So if you think a friend or family member would benefit from reading it, or you just want to share it with the world, share this post using the icons below.
I have started to research the concept of ‘acceptance’ within the context of long-term conditions and serious illness/injury. If you or a loved one experienced the onset of a long-term condition or serious illness/injury in the past 2 years and are struggling or wondering with what acceptance means for you, I would love to speak with you. Click here to find out more.
© Copyright Barbara Babcock 2016