Navigating Motherhood And Chronic Illness

I don’t think there is a mother out there who has not wondered at some point in their life if they were a good parent. I am no exception! I’m sure every mother at some point what I would like to refer to as parenting guilt….whether you have a chronic illness or not. This chronic condition, "parenting guilt," afflicts every Mother in the world, no matter what race, creed, religion, age or economic status you are, or what decade you were born in.

Now imagine this "parenting guilt" coupled with the guilt of bearing a chronic illness in addition to trying to be a good mom.

You see, I am a chronic illness patient. I have an autoimmune disease called systemic lupus erythematosus, in addition to several other overlapping illnesses, such as neuropathy, chronic atrial fib, costochondritis, tinnitus, and mild emphysema, to name a few. Then there is the cost of dealing with such an illness, the ongoing struggle to receive the proper care, understanding this illness is changing my life, both in the present and the future, as well as my future roles, as a friend, parent, sister, professional and member of the community. The struggle with the reality of the illness, the shifting roles and responsibilities, the reduced family income, and the frequent social isolation is exacerbated by the controversial nature of the illness. There is a daily struggle to maintain a somewhat normal family life and to continue to make plans in the face of continuing uncertainty.

Now, although the treatment for lupus has come a long way, it still has a long way to go, which adds to the uncertainty of health, relapses from flares and the uncertainty of longevity.

When you have lupus, taking care of yourself can be hard enough. If you're a parent, dealing with doctor appointments and school, on top of regular parenting concerns can make things seem quickly overwhelming for everyone.

Even in the best of situations, being a parent is an extremely demanding, yet rewarding, job. Although I had been sick on more than one occasion during the years that my children were growing up, it was not until I got sick with lupus that parenting became somewhat challenging. I was tired a lot of the time. The pain was unbearable, even though I consider my self to have a very high pain tolerance level.

My role as a parent has changed since I’ve become ill in many ways. Some good, some bad, but the fact is, chronically ill parents have a lot to face up to. Unfortunately for parents who are chronically ill, the task list is even more daunting than it would normally be. Not only must they deal with their own pain and illness, but they must take care of their children’s basic needs AND help their children to understand and deal with the realities of the illness.

The burning question that I ask myself each day is, “Am I the parent that they need and deserve? Am I good enough?” This can be daunting on your self-esteem both as a person and as a parent. We never expect our children to take on the task of helping their parent with certain tasks, at least not until they are old and in need of care, but as a mother in the late 40s, this became a reality.

As a mother, the most difficult part of dealing with my illness is seeing the way that it affects my children. The fact is that I don’t want it to. I don’t want their lives to be impacted. The fact is that this isn’t the life I wanted or planned for them. I wanted to be fully present and able to give them everything. I wanted to play outside with them and go on field trips with them and travel whenever we wanted. I did not expect to have to cancel outings at certain times. It did help to have a driver in the family in my oldest son so he sometimes was able to take everyone out to avoid having to cancel the outing.

Movies and TV shows have made illness look glamorous and romantic. The reality is that there is nothing glamorous about it. Being sick is really complicated. It makes you strong and it makes you weak. It makes you give up and it makes you persevere. It makes you wiser about what life is really about while it steals yours right out from under you. Being sick is the greatest curse and the greatest blessing. But it is never easy.

One of my greatest fears is that my children are going to grow up feeling like I wasn’t quite an adequate mother.I feel that I have let them down sometimes. I've only wanted what was best for them, and sometimes I felt that I was actually the one standing in the way of them actually having a wonderful life.

As a “sick mommy”, I struggle everyday to care for my children in the best possible way that I can. It is my responsibility to see that their needs are met, that they are safe, and that they are loved. Most days, even though it probably doesn’t feel like it, I am actually accomplishing all of these things. Still, I am in a constant state of second-guessing. I lay down at night and my mind is flooded with thoughts of things I should have done better and moments when the pain got the best of me and I lost my temper. I am constantly reminded of situations throughout the day that I reacted inappropriately to. I shouldn’t have yelled. I shouldn’t have snapped. I shouldn’t have gotten so frustrated. But the pain…I just couldn’t get on top of it.

I might be sick, but I am still their mommy. They still love me. They still need me. And this is really hard, but I’m not alone, and I’m not giving up on them.

When I was first diagnosed I felt like I had been given a death sentence. I felt like my life had been cut short. I was a very active person, very involved in my children's lives, amd looking forward to all the accomplishments that were coming. My oldest was about to graduate from High School, and start college. Just two years after that my daughter graduated from high school and went off to college in another state. It was very challenging drive back and forth for orientation meetings and finally to shop, prepare her dorm and drop her off in her dorm. The emotional turmoil was enough as it was. To top it off I was not feeling very well during the dorm preparations, and was so happy that I had some help with this part from a dear friend. I have learned how to graciously accept help when offered.

Although my oldest son is now starting his own family, and my daughter is off in college, one would think that it would get easier, and to a certain extent, it has. However, one child or three, the challenges of being ill do not get any easier. My daughter worries about me, even though I tell her not to. My oldest son worries about me. My youngest son is only 9, and is being home schooled, and that raises challenges all its own, but that will be addressed in another article. Even my youngest son worries about me. You see, he lost his father just over a year ago to cancer, so seeing his mother sick is also raising questions of whether he is going to lose his mother also.

I remember when I was struggling to find out what was making me so sick, I was constantly going from doctor to doctor for tests. After visiting a neurologist to determine why my feet were constantly tingling or burning, and why my hands were always on pins and needles, the recommendation was made to test me for lupus. The results were positive and so began a process of treating the diseases.

At the time I was a teacher, at the same school for almost 10 years. My life suddenly changed with this diagnosis. It was almost like a death sentence. That was how I saw it initially, anyway. Here I was a single mother of 3 kids….one getting ready to graduate from high school, another in high school, and one in elementary school, all still very dependent on their mother to be there to take them to school functions, to play games with them. Now I was hearing myself say, quite frequently I might add, that I couldn’t, that I was tired, or that I had to stop for frequent breaks as I tired easily.

When you are chronically ill you bear the extra burden of:

• Not being physically able to do everything that all the other mothers can
• Not being able to be spontaneous as I usually am
• Not being emotionally stable enough, due to pain, to handle very hectic days.
• Not being able to volunteer in the classroom, on trips or for school events, as I would like.
• Dealing with a very unpredictable disease, so planning and sometimes having to cancel at the last minute was normal
• Sometimes being physically unable to attend performances, plays, competitions or parties.
• Having others look at you and wonder if you are really as sick as you say, because I have what is known as an “invisible illness.”

I have been blessed in that I have found some marvelous ways of treating myself and not have to miss out on too much, although I have felt the pangs of guilt of having to cancel an invitation, or to leave an event early because I did not feel well.

Over the years, I have learnt quite a few lessons, being a parent, and a chronic illness parent that I would like to share with you.

1. Allow yourself to go through the stages of grief.

DENIAL Denial is the first of the five stages of grief. It helps us to survive the loss. In this stage, the world becomes meaningless and overwhelming. Life makes no sense. We are in a state of shock and denial. We go numb. We wonder how we can go on, if we can go on, why we should go on. We try to find a way to simply get through each day.

ANGER Anger is a necessary stage of the healing process. Be willing to feel your anger, even though it may seem endless. The more you truly feel it, the more it will begin to dissipate and the more you will heal. There are many other emotions under the anger and you will get to them in time, but anger is the emotion we are most used to managing. The truth is that anger has no limits. It can extend not only to your friends, the doctors, your family, yourself and your loved one who died, but also to God. You may ask, “Where is God in this?

BARGAINING Before a loss, it seems like you will do anything if only life could return to what is was. W start to bargain. We want to go back in time...the time before we got sick. We go through a period of "if only." We wonder if it was something we did to cause the illness... if there was something we could have done differently.

DEPRESSION After bargaining, our attention moves squarely into the present. Empty feelings present themselves, and grief enters our lives on a deeper level, deeper than we ever imagined. This depressive stage feels as though it will last forever. It’s important to understand that this depression is not a sign of mental illness. It is the appropriate response to a great loss. This was an important step for me. At this point I sought out a psychiatrist who was instrumental in getting me through the depression and onto the next stage.

ACCEPTANCE Acceptance is often confused with the notion of being “all right” or “OK” with what has happened. This is not the case. Most people don’t ever feel OK or all right about the loss of a loved one. This stage is about accepting the reality that our new reality is the permanent reality. We will never like this reality or make it OK, but eventually we accept it. We learn to live with it. It is the new norm with which we must learn to live. We must try to live now in a world where we deal with chronic illness on a daily basis. We can never replace what has been lost, but we can make new connections, new meaningful relationships, new inter-dependencies. Instead of denying our feelings, we listen to our needs; we move, we change, we grow, we evolve.

Stop pretending that everything is okay. This pretense can wear us down. As soon as I was diagnosed with lupus, I made sure to tell my children. Obviously they were a little young, and did not understand everything about the illness, but I wanted them to be aware of what was going on with me. So many times I believe we try to bury it, and pretend it doesn’t affect us or our kids. Family should talk about it openly…not because you want to increase the pain of what the kids are going through, but because you want to be open. The same thing goes with friends. Be open with your friends. If you have to cancel an event, explain why. Maybe plan another get-together where you don’t have to leave the house…a girls’ night in.

Understand that you are not the only that is suffering from the effects of your chronic illness. Your kids will have lots of questions. They will worry about the future. They will worry that mommy will die. The best I can offer them is my honesty and openness about the impact of chronic illness on all of our lives.

Being chronically ill changed me, but I believe that it has also changed my children. I know my children are kind and understand empathy more than most children their age. I know they value honesty and openness and are sensitive and caring. And, as they get older, I know they will be better prepared for life’s obstacles as a result of the lessons we have learned as a family, dealing with and managing the effects of chronic illness.

Don’t isolate yourself. It is so easy to feel so alone when you are struggling.

Recently this has been the toughest lesson I have had to learn. Sometimes I want to just hide away from people because I am feeling so horrible due to illness. I had to realize that I need people, that sometimes I need to be around people even when I am feeling crummy.

I have learned to appreciate the days where I feel healthy, strong and on top of my game, and I have learned to make those days count.

Chronic illness can have a massive impact on parental functioning and the ability to carry out normal activities of daily living. As a result, it is important, though understandably difficult, to try to remain cognizant of any clear differences in your own behaviors or actions. Upon noticing any changes, the first thing you must do is take care of yourself, getting whatever help you might need. Then, if you suspect that your parenting skills may be suffering from dealing with your disease, it is vital that you recognize this problem and then seek out help to correct the issue, whether that means getting extra rest, utilizing child care coverage from family and friends, and/or seeking professional counseling. Be creative — maybe your neighbor can watch your kids while you rest, and then you can return the favor with something that doesn’t require a lot of energy, like watering plants while they are on vacation.

Maintain normalcy, but expect adjustments Keeping things as normal and unchanged as possible will help children to continue their daily lives with as little problems or interruption as possible. However, with a parental chronic illness, this isn’t always possible, or at least not entirely so. For this reason, it is essential, in conjunction with keeping your family informed, to explain to your children and spouse that some things might change, and what to expect if and when these changes occur.

Changes might alter the way you spend time together, but not that you do. For example, high-energy activities can be replaced or pared back with creative at-home activities that may be even more fun, especially if it means you can fully participate. I have found that the kids enjoy when I can be the pitcher for an entire mini baseball game with a plastic ball and throw it at them to get them out. The arena is scaled down to the size of the front yard and I don't have to do any running.

Playing the Wii sports games are easy, as I can sit down and bowl on days that I don't have much energy. We can also do other activities such as paint small objects such as stones.

Transitions are difficult enough for many kids, so anything you can do to anticipate and explain these changes would be quite helpful. Having an idea of what’s to come — even if it’s that you aren’t sure how you’re going to feel when you wake up each day — and a plan in place for how to adjust when it does, can help children and the entire family better deal with what's happening with the parent who is ill.

Finally and most importantly, I know that being sick does not make me a bad parent. If anything, I try even harder to make my parenting count.

There are millions of parents living with chronic illnesses and trying to balance being sick and raising children. We are not alone and we are good parents. We are responsible for both our own health and for our children’s security. That means we continue to be parents despite chronic illness and we pay particular attention to how our children are affected. Sometimes that means parenting through the pain and fatigue in order to offer them a sense of normalcy, and other times it means leaving the channels of communication open between you and them.

Much has transpired since those first few months after my diagnosis. Since then, I have learned to better manage my disease with medication and good nutrition choices. While I am not asymptomatic, my chronic illnesses have not taken away my ability to be employed or to care for my children. Granted, I have had many moments in the past few years where I questioned my ability to balance my chronic illnesses and my parenting. Nonetheless, knowing that I am raising kind, caring, honest and prepared children allows me to question my parenting less.

Don't see your children's future through your past. Whether it’s your childhood or your previous dreams for your child’s childhood, don’t look back. See life through your children’s eyes, not your own. Adults tend to view life through the past. We can’t help it; it just comes naturally. But our children see life from here on out. They aren’t looking over their shoulders at what they are missing. They are looking forward to what’s coming. So don’t worry about what you experienced that they will lack. Look at what you can offer. And build expectation.

Look forward to build expectation. Look at all the possible ways you can bring joy, laughter, learning, and hope to your children. Create expectation for your children, even if it is as simple as “Next time Mommy has a doctor’s appointment, we’ll stop by the store and pick up a treat!” or “As soon as Mommy’s headache gets a little better, we’ll play dollbabies in my bed.”

Building expectation for positive experiences will help take your mind off the long-term expectations you had before your diagnosis and off the short-term plans you made before the current flare.

I’ve not nailed this one perfectly as a parent, but I did shoot for hitting the nailhead more often than not. We have had so many wonderful adventures together! And after hearing sweet words of unexpected encouragement from my children over the years, I think the love-nail sank deep into their hearts, too.

Clear communication is always important, but especially so with chronic illness. We talk about our expectations, so that there is no misunderstanding or resentment if they’re unmet. Other people in your life may not understand your suffering, and it helps to be upfront and honest about how you feel, especially if they can help you.

As a parent with lupus, one day I might feel terrible and the next day I might feel pretty good. It's hard for my kids to keep up with the constant changes in how I feel. When the kids were younger they couldn't understand how I was well one day and not feeling well the next, or from one minute to the next something might change. Now that they are older, they understand a little more, and are a little more understanding.

As a parent with lupus, I have not been able to do all the things I used to do with my kids. Although they're older now, I still like to travel with them. Recently my two younger ones and I connected on a trip to New Orleans. It was a first for them, but not for me, as I had lived in Mississippi, (gone to college there) and New Orleans was only two hours away. As they've gotten older, and I'm about to become a grandmother, I am now thinking of other traditions I can start with the grand-baby. When you're considering new family traditions, make them low-stress, so you can participate even when you're feeling crummy.

There will be times when you'll be too sick to do things that your kids want or expect. It will be hard to disappoint them and they might be angry. Acknowledge their feelings and tell them why you had to say no. This applies even to friends and other family members. Sometimes you have to urn down invitations to events. Maybe you have to cancel at the last minute. You will disappoint people. They will forgive. Try to make it up to everyone at some point or plan events where you can be at home and invite others over.

This is probably the hardest thing for me to do....ask for help. As a very strong, independent woman, I have always learned to depend on myself, even when sick. Don't be like me. As a parent with a chronic illness, you WILL need help on a regular basis. Schedule it. For you it could mean getting a nanny. Maybe it means asking your sister to take the kids grocery shopping once a week. Maybe it could be asking a friend to help with housework once a week. It could mean asking friends to watch the kids while you take a nap or some time to yourself. You need time to yourself.

I realized very early on that I needed emotional help after being diagnosed with lupus. This was hard for me to admit, but I decided that this was a sign of strength...NOT of weakness, admitting that I needed help. Being able to express my concerns to a psychiatrist about everyday hassles such as being a teacher and how my illness was affecting my ability to teach, to being a parent and how my illness was affecting that area, to just how being ill was affecting me as a person,.... as well as serious health anxieties...this helped me to feel better and more in control. I learned practical techniques to manage the day. Family therapy can be a good idea too. It will allow your whole family to express themselves freely in a safe, controlled environment.

Reaching out to other people via support groups who are going through similar struggles and even triumphs can provide the emotional support needed to get through the toughest of days and be a great source of encouragement and advice.

There are certain things, no matter what, I refuse to give up doing; things that matter. Hopefully my kids will remember me cheering them on at taekwondo tournaments and sporting events. Hopefully they will remember the amazing birthday cakes I create or had made for them. I hope they remember the memories we created on our various trips for holidays, the parties I had attempted to have for them, and just everyday moments special for them and the adventures I plan.

Throughout the rest of my years I will continue to enjoy my children, and now my grandchildren that will be coming. I will continue to create moments and special memories, new traditions, and a fabulous life with my children and the rest of my family....even in the face of chronic illness!

It is not a choice to be a parent living with chronic disease. You did not choose to be chronically ill, so get rid of any guilt you may be harboring that you are not the best parent, spouse, or friend. Remind those around you, especially the children in your life, that you love them and that you are there for them. It may not be in the ways that you had originally planned or hoped, but it is no less valuable or meaningful. Take each day as it comes and let the expectations of what you ‘should’ be doing fall by the wayside. Try to live in the present and find balance in your life, focusing on your blessings. This attitude will go a long way towards maintaining a positive outlook in the face of the adversity of living with and parenting with a chronic disease.