A Lonely journey
Last updated: May 2023
For all the caregivers
This article is for caregivers who sometimes feel lonely or sad. I've thought about it for a long time if it's smart to write about emotions when I'm a bit stuck as a mother myself.
As caregivers, we are expected to be the strong positive parents. And I try to be that very often. But it is quite challenging to always be strong and positive when your child is in pain, and you can't help her. In the past months, I have often felt that there are no more resources to help my princess. Simply because the pain in her back continues. We faithfully go to the physical therapist every week; we regularly do all the tests, and we ensure that we live according to the rules and reduce the risk of a crisis.
Chronic pain is unfortunately a different story, and it seems like the pain is always lurking when it can strike. Over the past period I have felt extremely powerless as a mother, I didn't feel like doing anything and especially had no energy for extra things. I feel it's hard for me to get out of the house and do something fun. In addition, I always have to cry when someone asks me how my child is doing.
When I started to cry the last time, I realized that something is really wrong. I had to confront myself with the question “Why do you keep crying?” "Why are you so emotional?" So much came to my mind. I talked to a therapist and from the conversation I could tell that I feel guilty and powerless that I can't help my princess when she is in pain, and I also feel guilty when she asks why she has sickle cell disease. It is a combination of guilt and powerlessness.
And yes... of course, I try to give her a very nice life, let her enjoy the beautiful things, and she laughs, dances, and is a happy child. But when pain knocks on the door, reality hits us in the face.
At times like this it's so hard to find someone who understands what you're going through, and in fact it's even harder to find someone who knows how to react/response when you feel this way. I have a lot of lovely people around me who love us, but few people realize how challenging it is. I appreciate all the positive words, and motivational sessions, but sometimes you just need someone to listen to you, make you feel understood, and be careful about giving advice.
Because it is so challenging, this journey can be quite lonely when there is a crisis going on. Because I prefer to choose to be quiet and alone with my child. Without explaining too much, and without seeming unkind or frustrated.
I am very curious about how other caregivers deal with their emotions, sadness, guilt, and frustrations. I have received some tools from the therapist, and I think it is important to share it with you as well.
- Journaling: write in your journal how you feel so you have an outlet
- Confidant: it is important to have a confidant with whom you can express your feelings in a safe way
- Meditate: at times when you don't like it or feel alone, try to meditate and focus on your breathing
- Affirmation: try to use positive affirmation as much as possible
Moving forward together
There are so many other things we as parents could do to make the whole situation less lonely. I always say to my princess: we are in this journey together! And I have to keep telling myself that too. "We are in this journey together!"
Are you interested in connecting with other sickle cell warriors?