In the Parents Magazine article, “Mommy Isn’t Feeling Well Today,” Sarah Mahoney interviews many experts: professionals, parents who have chronic illness and sometimes, as in my case, people who are both. The article is impressive in how it covers many of the challenges parents face every day rearing their kids while their health is seriously compromised.
Below I summarize the article’s most salient points and add my comments:
1) “Handling chronic illness is about learning to live in balance,” said Rosalind Doran, Psy.D.
Many of us learn the hard way that if we don’t pay attention to what and how much we do in all spheres of our lives we can quickly over-do. The result is the same as when the tires on our car are out of balance. We’re in for a very bumpy ride.
2) “You can’t dwell on questions like. ‘Why is this happening to me?’ or ‘What if it gets worse?’ It’s important to focus on feeling well and to maintain a positive outlook.”
Yes, this is more easily said than done but this is an important point and one I’ve made before. If you have a chronic illness, and I do, there is a danger that we will over-identify with being a sick person. We are not our illness and it really does matter that we make the effort to see the cup half full.
3) The first hurdle is revising expectations of family life. “Of course, you can still be a loving parent, but some adjustments will have to be made. Your family will not look the way you imagined it would. That’s a loss, and it hurts a lot.”
In order to move on, down a new path, we need to let go of what may have happened if we had gone down another. If we hold on to, “What would my life have been like if I wasn’t sick?” we deny ourselves the opportunity to create a real and satisfying present.
4) A chronic illness may change your plans about having more children.
That may mean imagining a life with fewer kids, considering adoption or even remaining childless. I had to accept the very real possibility that I would not be able to have kids. As anyone who has been through such an agonizing reality, there is a mourning process, a grieving that takes place. For many women there is also a feeling of guilt (could I have done something to avoid this?) that must be let go.
5) Fighting fatigue and dealing with the cycle of ‘good days’ and ‘bad days’.
For many, this is one of the most difficult stresses when coping with chronic illness. When my illness was active, I woke up thinking, “What kind of day will this be?” Simultaneously, I mentally did a full body check. If everything ached so much I didn’t want to move, I moved anyway, knowing that, like the Tin Man in the Wizard of Oz, if I didn’t move I would be stuck there forever.
6) Learning to put your needs ahead of your child and husband.
Another tough one but absolutely necessary. We are here, committed to the long haul, therefore we need to be cognizant of how we care and maintain ourselves to last.
7) Ask for help. Re-create a sense of extended family. Support groups.
There’s a man in the article who developed a group of Dad substitutes for his children in case he died before they were grown. That took guts and true friends.
8) Talk about your feelings with a mental health professional who gets it.
Yup. Consulting with a professional can really help you, not only with your own adjustments but also those of your spouse, helping him or her appreciate what’s going on.
9) Figure out how to navigate your new normal.
Allowing yourself to make needed adjustments when it comes to what you can do now takes a lot of love, kindness and patience. It can also mean trials and errors, experiments until the right formula presents itself and then that will need tweaking as circumstances change. It helps a great deal to have a team mate. My husband and I, married over 25 years now, check in regularly. Is our system still working?
10) Be open to the possibility that there is something actually positive in experiencing life with a chronic illness.
There is something to that old saying, ‘That which does not kill us makes us stronger.’ If it weren’t for having to deal with a chronic illness from early adulthood, would I have fully appreciated the great miracle life is? Would I have paced myself everyday to take the time to rest, to ‘smell the flowers’ as well as work? Those of us who are veterans in living with a chronic illness try not to sweat the small stuff, value the gift of the moment and tend to catch ourselves early should ambition gallop ahead of what is healthy.
Speaking for myself, I know that coping with chronic illness has made me a better person; more empathic, more patient, more open to happiness. It may sound crazy to some, but I truly believe I am blessed.
Read the whole article “Mommy Isn’t Feeling Well Today”, Parent’s Magazine, September 2010, page 96