Being a parent with a chronic illness
Being a parent with a chronic illness is not easy, it is full of obstacles!
Being a parent is never easy, but it can be especially challenging when you have a chronic illness. With an increase in autoimmune diseases such as lupus and fibromyalgia and with Lyme disease spreading in near-epidemic proportions in certain areas of the world, it is rare that communities are not affected by the experience of parenting with chronic diseases.
Sick mothers and fathers are suffering, but they still do their best to be the best father or mother and to be up to date in raising their children … although sometimes they see it all uphill.
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IT’S HARDER WITH A CHRONIC ILLNESS
Parenting with chronic conditions is challenging for many reasons . Many of these illnesses come with profound exhaustion. Parenting is a 24/7 job, and all parents feel tired. When you add in the level of fatigue that can accompany a chronic illness, many parents feel like they are drowning.
Another problem that chronically ill parents may face is the fact that our physical challenges can often be described as an “invisible illness.” Living with an invisible disease means that we can appear perfectly healthy at first glance. Even our closest family and friends may not be aware of the daily struggles we face. We hold ourselves to the same standards as everyone else , and we do our best to keep up with parenting, work, and life without the understanding and offers of help that can accompany more visible illnesses or physical challenges. that manifest themselves more readily to the casual observer. .
Although it is often a constant and ongoing battle to cope with the physical aspects of having a chronic illness, there are small steps that you can take to help us along the parenting journey.
KNOW YOUR STORY
Along with the outside world unaware of our struggles, chronically ill women or men are often able to minimize the effects and challenges of being chronically ill parents because we do not feel in sight. It is important to recognize our limitations and difficulties because if we cannot name these things, how can we expect others to do so?
In addition to being honest with ourselves about what is difficult, we also have to be honest with our families. It can be difficult to talk to children about the disease. We don’t want to scare or worry them, but we also need them to understand that sometimes Mom can’t play because she doesn’t feel well, not because she doesn’t want to. We need to be honest about how a full schedule of doctor appointments can prevent us from doing everything we want to with our children.
Sharing the truths of the disease with our children at an appropriate level can also provide moments of teaching to develop more kindness and compassion in children. We can help them understand that we can never assume that we know what other people are going through and that everyone is going through more than they think. These life lessons can be invaluable.
ASK FOR HELP WHENEVER YOU NEED IT
It’s amazing how something so simple can feel so harsh. Asking for help triggers emotions for all of us. We set high and often impossible standards for ourselves as parents. We want to be able to do everything and that cannot always be. Even parents who are not living with a chronic illness need to ask for help regularly. We need to stop judging ourselves and take the time to build a community of trustworthy people, both with our own friends and with our families. It really takes a village to raise a family.
Having people in our lives that we know we can call at the last minute to pick up our kids from school when we are stuck at a doctor’s appointment or to drop off dinner when we have an especially difficult week is invaluable. Recognizing when it is a better parenting situation to organize a playdate for our children than trying to manage an afternoon of being with our children when we feel bad is not easy, but the more we put it into practice, the more reasonable it seems when we we need to do this. Caring and responsible parenting does not always mean that we are the best person to always be there or to complete a task for our family.
YOUR CHILDREN NEED YOU … AND YOU NEED THEM
We may hesitate to consult with our children about their emotions regarding our illnesses, especially if they seem fine . Unfortunately, just like we often do, children may hold back their feelings or even not realize what their emotions are until they are given the space to talk about and cope with them.
If we don’t take the time to talk about it, children can start to harbor feelings of resentment, sadness, or feelings of misunderstanding . While we may have the feeling of disturbing a sleeping bear when addressing these conversations, in the end we will always feel healthier sharing our emotions, both for the children and for ourselves.
The aging with a chronic disease can not match the vision we had for ourselves and our families, and take the time to mourn the loss of that vision so that we can accept our new normal is important.
Honesty is the main theme of how we can be better parents with our challenges. We need to be honest with ourselves, with our families, and with the outside world to be the best parents we can be. Although that sounds simple, basing ourselves in that place of honesty can often be more difficult than the physical challenges we face. However, if having a chronic illness has taught you anything, it is strength and emotional determination, and if we apply those gifts to our needs for honesty in the parenting process, we can be the parents we hope to be, no matter how different they may be. be with respect to the “normality” of other families who must not face chronic diseases.
Dr. Tabriella Perivolaris, Sara's mother and fan of fashion, beauty, motherhood, among others, about the female universe. Since 2018 she has been working as a copywriter, always bringing to her articles a little of her experience and experience as a mother and woman.