The demands of parenting
Focus on what you can achieve
Caring for a baby can be very demanding at times, especially if you have a lot of symptoms from your rheumatic disease such as joint pain, stiffness or generalised fatigue. Some mothers may find it frustrating to have to cope with ups and downs in their strength and energy from one day to the next.
Others have to deal with disease flares within the first six months of having their baby. If this happens to you, it’s important to bear in mind that for the vast majority the exacerbation is temporary and will resolve within the first 12 months.
By focusing on what you can manage, rather than what you can’t, you may find your new life as a parent easier. If pain means that you’re unable to move as quickly, or participate in as much physical activity, as other people, there are a lot of other things you can enjoy with your little ones to make up for this, like building with lego, drawing, doing puzzles, reading books, playing games or baking and cooking.
Empowering for your children
Chronic illness in one parent affects children, but if you as parents deal with challenges appropriately you can actually build up your child’s resourcefulness. Being encouraged to help out at home such as by getting themselves dressed and completing other tasks is a positive challenge for young children.
Nevertheless, many parents with a rheumatic disease worry that they may be burdening their children with too much responsibility. In fact, studies show that children who have one parent with a rheumatic disease grow up to be responsible and independent adults, and that showing consideration for other people becomes second nature to them. From early childhood, they become accustomed to what is reasonable for them to do for themselves, which gives them a sense of achievement.
Despite the challenges faced by parents with a rheumatic disease, the general consensus from them is that becoming a parent is the best thing that has happened to them, and that they’re glad they didn’t miss out on having a child.
Practical advice for parents with rheumatic disease
This article offers advice on practical adaptations, what you should be aware of when buying baby equipment, and on assistive products you can use.
In a busy life of parenting, keeping house, leisure activities and perhaps professional life, it’s easy at times to forget that you were a couple before you became parents.
For many women, disease flares are an additional strain on their romantic relationship. Chronic pain, aching joints and constant fatigue may take their toll on your energy and mood. At times when caresses and cuddles cause physical pain, sexual intimacy may not have much appeal. Try to bear in mind that very few new parents, whether or not they have a rheumatic disease, feel they can engage in a passionate and spontaneous sex life.
Advice for preserving sexual intimacy
There are all kinds of ways of showing each other love and affection. Sexual intimacy needn’t result in sexual intercourse. Tender caresses, gentle massage, kisses and cuddles may sometimes be enough. The main thing is to try to find the time to give each other priority.
- Take a painkiller about an hour before having sex
- Take a hot shower to relax your joints and relieve pain, on your own or with your partner
- Consider having sex during the day when both of you might be more in the mood
- Planning when to have sex may make it easier to make time for it
It’s important to bear in mind that sexuality is also affected by other factors like stress and illness or different life phases such as early childhood or menopause. This is why it is perfectly normal to experience variation in sexual desire, your sense of personal attractiveness, satisfaction with your sex life, whether or not you are in the best of health or have a chronic medical condition.
Being a partner of someone with rheumatic disease
When one family member has a chronic medical condition, it affects the whole family. The partner of someone with a rheumatic disease won’t feel the symptoms physically, but will be affected emotionally by worries and the uncertainty of the situation.
As a couple, changes in your respective roles may be challenging to deal with. Many of the aspirations and plans you once had for your future together may need to be reconsidered.
Living with a loved-one’s distress over a medical condition may be as upsetting as having that condition yourself. Many people tend to neglect their own needs when they have to show constant consideration towards a partner with a chronic disease .
Good communication is key
As a partner, it may be difficult to know how to help and when. The keyword here is communication. It is important to create a space where both sides can have their say, so that you can touch base together on what you expect of each other and of your relationship.
As a partner, it can be difficult to relate to the ups and downs of the disease that come without warning. This is also where information and openness can make a big difference.