In a recent post, I blogged about Parenting and Chronic Pain. After that post, I came across an article by Dr. Gary about Chronic Illness and Parenting that I would like to share.
When Mommy or Daddy Gets Sick
Gary R. McClain, PhD
“Mommy doesn’t feel good.”
Hearing these words can have a profound impact on a child. Whether the parent’s illness is chronic or catastrophic, or even a temporary condition like a cold or the flu, children may feel as if their well-being is at risk. Household routines change. The ill parent may look or behave differently. Treatment may include the involvement of unfamiliar faces, like healthcare professionals, or hospitalization. All of this can leave children feeling confused and scared, even if they appear to be taking it all in stride.
Here are some ways to help children cope with the illness of a parent:
Give age-appropriate information coupled with lots of reassurance. When children don’t have any information to go on, they make up their own stories. These stories aren’t grounded in reality, and can greatly increase their fears about the future, and can even leave them wondering if they are somehow responsible for their parent’s illness. Stay optimistic when talking to your child – beginning with reassurance that the doctor is working hard to help you feel better. Talk with a therapist or other child specialist if you aren’t sure what your child is ready to hear and when your child is ready to hear it.
Encourage your child to express his/her feelings. Just because children don’t appear to be worried, doesn’t mean that they aren’t. Children learn to stay positive out of fear that they will cause their parents additional worry. They may also interpret your own insistence in maintaining a positive attitude as a signal that they aren’t supposed to express their own feelings. Start the conversation by simply asking your child is feeling, along with reassurance that you want to hear whatever it is they want to tell you, even the ‘scary stuff.’ Give a few extra hugs and reassuring words.
Maintain family routines. Day-to-day routines provide children with a sense of comfort and safety, so even the most simple shifts in what’s normal at your house can leave them feeling scared or confused. When you aren’t feeling well, or are preoccupied with your own concerns, you may have days when you are tempted to overlook the details, like making sure you are stocked up on their favorite breakfast cereal, or sitting with them to watch Saturday morning cartoons together. Stay on top of the little details of daily life, and get some help here if you can’t.
Don’t be afraid to ask for help. Make a list of everything that has to get done and then do some cherry-picking in terms of what you want to handle yourself and where you will need someone else to jump in. Relatives and neighbors can be enlisted to give you a hand with housework, grocery shopping, or providing transportation to extra-curricular activities. If you are partnered, or have teens, they may be able to help out with the younger children. Save your best energy for the tasks that bring the most quality of life for you and your children – having lunch together, going to the park, doing homework together. This may also be a good time to invite the grandparents for a visit if they can give you some temporary back-up.
Accept help from your child. It is human nature to feel helpless when a loved one is not feeling well, and when we feel helpless, we want to do anything possible to feel like we are doing something – anything – to make things better. Give your child the opportunity to do you a favor, something as simple as helping you make dinner or perform other household chores. Better yet, find projects that you can work on together.
Don’t neglect your own well-being. Remember that you can’t take care of others if you aren’t also taking care of yourself. Listen to your doctor’s recommendations, and listen to your own body. Make sure you are following your treatment plan and getting adequate rest. If you find that you aren’t able to get the rest that you need, review that list or priorities and see where you need some additional assistance. Don’t try to be Super Mom or Super Dad (even if that means the house isn’t quite as spotless as usual, or if the dishes stay in the sink a little longer).
Find a safe place to express your own feelings. What’s going on with you emotionally? Children are very perceptive, and they can sense when their parents are worried or scared or otherwise trying to keep their feelings bottled up. Feelings don’t go away by themselves. Talk with someone you trust – a friend, family member, a member of the clergy, or a therapist. If you’re clear on how you’re feeling about your illness, you’ll be better able to help your children with their own emotions.
While stressful, illness can also provide an opportunity for growth. Children can learn to be more independent, and you can develop a deeper relationship with your children that includes sharing of emotions and joint problem-solving.
When I check the searches to my site, this one stands out: How Can I be a Good Mother When I Suffer from Chronic Pain? This is a question that I ask myself almost daily but I realize that I am not alone here. There are thousands and even millions of young mothers trying to make sense of motherhood and chronic pain and while they shouldn’t really go together, they often do. I used to believe that we were a minority group but it turns out that there are millions who parents out there who live with the reality of chronic pain on a daily basis.
Parenting is hard but parenting with you live with chronic pain is really hard. Parenting means you draw attention from yourself and give it to your children because they need you. That is really hard when you are in pain daily but the sad reality is that you are not the only one suffering from the affects of your pain. Children whose parents suffer from chronic pain have many questions and are often insecure about the future. The best thing a parent can do is be open with children about pain and while this is difficult, it is a necessity to make your child feel at ease.
I am a mother to a toddler and a preteen. My toddler understands that mommy hurts and I find that on the days that I am most stressed out with pain, he knows because he starts to act out. For example, the other night, I had an ice pack under neck because I was having excruciating pain in my neck and shoulder muscles. The pain was so bad that I was near tears. My toddler looked at me with the saddest eyes, laid down next to me and wanted to be held. I did not know how to respond but I knew he understood and one of the things I have learned is that I can’t hide my pain from my kids. I hugged my toddler, told him that mommy’s ouchie would go away soon and that I would play when him when the ouchie was gone.
My ten year old has questions about how the future and whether things will get worse for me. I tell him that I am doing everything I can so that I do not get worse. He worries about our schedules and routines and often asks what he can do to help. He wants to know who will take care of his brother and him and wants to know that someone will. For me, my honesty holds more clout than my telling him that “I don’t know” or that “I will be better tomorrow” when he knows that may not be true.
I don’t know what my response will be when they get older and if my condition worsens. I just know that life for them isn’t easy because I am not healthy. I also know that they understand empathy and a lot of their peers don’t and never will. I know that they know honesty and openness and they know how to be caring and sensitive. The best a parent can do is share their good days with their children because those are days that help them get through when bad pain days come. It is also important that parents stay on top of their children’s moods and behaviors because children are equally affected when a parent suffers from chronic pain.
I have dealt with chronic pain for a number of years now and I know how challenging it makes parenting. I often find myself irritable and crabby and it does not make me a pleasant person. That is why I have learned the importance of being honest with my children and not making promises that I cannot keep. Hiding my pain is not good for any of us. I also see my ten year old trying to turn into my caregiver and that is where I have to draw the line and I think that is where every parent has to draw the line. As parents, we need to be the responsible parties for our health and for our children’s security. That means we have to continue to be parents with chronic pain who pay particular attention to how our children are affected.
Dictionary.com defines “weakness” as a “state or quality of being weak; lack of strength, firmness or vigor, or the like; feebleness.” It also refers to weakness as “inadequate or defective,” in terms of “a person’s character.” The definition of “strength,” by contrast, can be defined in nearly fifteen different ways, as presented by Dictionary.com. It is the “the quality or state of being strong.” It also has to do with “mental power, force or vigor” and “moral power, firmness or courage.” There are many other definitions but my favorite comes from Collins English Dictionary, which defines strength as “the ability to withstand or exert great force, stress, or pressure.”
All of us, at some point in our lives, see ourselves as weak and other times, as strong. Living with two chronic pain conditions means my strength is tested on a daily basis. I am not always strong and I have been known to be weak to the point of tears. Those who struggle with the disease have learned what strength is and we have also showed others what it means to be strong. Because we show our strength to the rest of the world, and hide our weakness, we are often underestimated when we show weaknesses. It is kind of like a paradox (a situation that contradicts itself).
On my worst and most painful days, I cannot hide how much I am hurting. I do not necessarily say it or how much I am hurting but it is reflected in my mood, my conversations, my ability to get up in the morning and to work on time, and my work product. I want to tell my employers that I need to be accommodated but I fear the outcome of such a decision. I don’t want to them to see me as incapable, because once I ask for an accommodation, then I will be seen as weak. This morning, as I made in late barely able to move, I contemplated whether it was time to ask for an accommodation or just simply a little understanding. Often times, I wonder whether asking makes me better than those hundreds of people who have other chronic conditions such as diabetes or high blood pressure. Do I deserve an accommodation and they don’t? The fact that I fully understand that I am not better than anyone else keeps me from admitting that I am weak.
My kids think I am strong and that I am capable of everything from hanging the moon to curing a boo-boo or a tummy ache. My ten year old often tells me he wants to be strong just like me when he grows up. To him, I am strong even I feel weak because I won’t show my children my weaknesses. Nevertheless, it is not easy to feel strong when you feel like the disease is winning. Within the last few weeks, I went from having few symptoms to have this disease hitting full force. The swelling that I did not miss from a year ago has returned and along with it has come the sadness and the feelings of being weak.
I know the changes in the weather play a part but last year at this time, I was in a dark place and I do not want to go back there. My kids need me to be strong even I am so weak that I am down on my knees. I guess I can take it as an opportunity to pray for guidance and strength. I know that I am only human and to be human is to show weakness. None of us possess the ability to be strong all the time. As for me, I have to learn to come to terms with the reality of this disease because fighting with it means that I do not always win. I have learned, if anything that my conditions taught me to be strong and I have learned the hard way how to prioritize and what is most important in my life. Admitting that I am not always strong and that I can be weak means that I am ready to come to amicable terms with RA and to live with it and not against it. Feel free to wish me luck (wink-wink).
I recently received a “Let’s Talk RA” communication kit from the Arthritis Foundation. First, I would like to point out the importance of communication with your doctor towards managing your rheumatoid arthritis. Let’s Talk RA offers an opportunity to the take the first step in learning to discuss your healthcare options with your doctor. The kit is free and it provides a lot of great important information essential for successful management of RA.
The communication kit offers four great resources: (1) a communication guide that offers advice on how to make the most of your appointment with your doctor; (2) a healthcare assessment so that you can share your responses with your doctor at your next appointment; (3) a survey that allows the Arthritis Foundation an opportunity to see the helpfulness of this kit and so that they work towards other successful resources to help patients in RA management; and (4) information from the Arthritis Foundation and Bristol Myers Squibb about other resources and information they provide.
Personally, I think that this a great tool essentially for those who have a hard time communicating with their doctors on they are feeling and the concerns they may have about their treatment and healthcare. My favorite piece of this kit was the patient notebook, because it allows you a small, handy place to all your questions and your doctor’s responses to those so that you can look at that in preparation for your next appointment. These is so much information out there and it really helps and makes sense to have to break all that information down and to just look at the most vital information that you need to better manage your care.
When I asked to discuss this topic, I was a bit hesitant because I was not sure how the readers of this blog would respond. Moreover, I generally offer my personal experience when asked to write about a particular topic, and I was not prepared to do so in this instance. I did eventually decide that this was a topic worth discussing because there is so many people who feel like arthritis and chronic pain have no place in the bedroom, in particular those of us who suffer.
I debated the subject and decided to forget the taboo and go ahead to discuss the effect that arthritis and chronic pain have on sexuality. After all, what do I have to lose?
In addition to the requirements of intimacy, we can also look at why intimacy fails and why breakups and divorces occur. In looking at the reasons for failure, we see that there are challenges to successful relationships and that once successful relationships can fail. Moreover, when we consider the reasons for failure, we often forget that, in addition to emotional factors, physical factors can play a part in the success or failure of a relationship. Emotional factors are a given, as are intimate issues. Physical factors can include arthritis and chronic pain conditions.
The problems faced by arthritis sufferers are both emotional and physical. Emotional factors include self-doubt and poor body image. Physical factors include joint pain and other symptoms that are characteristic of a person’s specific arthritis condition. These concerns not only affect the patient, but they also affect that person’s partner as well. Barriers include physical pain, the ability to perform because of joint pain or other symptoms, expectations and personal needs- both sexual and emotional. This complete consensus can result into strong complications in a relationship.
The effects of arthritis pain, stiffness, fatigue, lack of mobility, and swelled joints can make sex difficult, painful, and unappealing. When arthritis affects your back, your knees, your hips, ankles, etc., sex cannot possibly be enjoyable. In addition, side effects of medications can diminish sexual desire and cause other problems such as vaginal dryness, erectile dysfunction, inability to orgasm, and fatigue that also lessen the desire to be intimate. Then, as the sufferer, you feel sexually unattractive and, as a result, you cannot feel relaxed enough to enjoy the actual act. These feelings bring with them anxiety and stress and further worsen our symptoms.
Sexual intimacy is not just about achieving an orgasm or the act itself. If we can change this perception, we can change our expectations. Taking a slower approach to intimacy works best for partners when they share mutual respect, care, trust and love for each other. Moreover, barriers can be approached through communication on what is comfortable and what is not. Arthritis does not necessarily affect sexual organs but the physical effects of the disease can make intercourse painful. Moreover, emotions come into play because of those physical aspects. Therefore, couples must address the emotional aspects, as well as the physical, openly and honestly.
Expressing fears and concerns allows the partner without arthritis to support and reassure. In addition, talking about fears will allow the arthritis sufferer to let go. What the arthritis sufferer must take in mind is that his or her fears can be viewed as rejection and vice versa applies. Rejection turns into distance and emotional breakdown of the relationship.
If these topics are sensitive initially, writing a letter to a partner to express fears and concerns can be another approach, but the next step would be to talk openly about what has been written down.
Sexual Wellbeing and Getting Creative
Psychological wellbeing and social support can contribute to a fulfilling sexual life. By learning to separate the emotional aspects of arthritis and working creatively to deal with the physical aspects, couples can take a more practical approach in dealing with changes brought about by arthritis and in turn, make accommodations for one another when dealing sexual intimacy.
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