When Moms Get Ill — and Life Goes On

“Maybe later, mommy isn’t feeling well right now.”  I can’t count the number of times I’ve said this to my kids, especially when they were younger. 

Raising children today can be exhausting for anyone who’s balancing schedules, schoolwork, a household, career, relationships and extracurricular activities.  Managing all of these responsibilities can be both physically and mentally draining. 

For healthy parents this can be difficult, but for a parent living with a serious or chronic illness this is even more challenging.  This is an issue close to my heart because I live with this struggle every day as my body fights two chronic diseases:  rheumatoid arthritis and ulcerative colitis.  

Living with a long-term illness can affect the entire family dynamic. Both of my afflictions are autoimmune and inflammatory diseases caused from an over-active immune system.  As a result, my body is in constant fight mode, often leaving me fatigued and in pain as my insides wage a war.  

I’ve lived with both diseases since my early 20’s and have been hospitalized several times over the years. I’ve been the recipient of three blood transfusions.  My last hospitalization was in 2009, and I will never forget how much it upset my son to see me so weak and ill. I know he was really scared for me and as a parent I felt helpless. All I could was tell him that I was there to get better and I would be home soon.

I am now 37-years-old and I have never been in full remission.  Treatments have included infusion therapy, self- injections, chemotherapy and more pill prescriptions than I can count.  Side effects from medications can be harsh, so for me it’s about finding the balance between living with symptoms of the disease or those caused by the treatment.

Some days are better than others and I do experience periods of time when my flare-ups calm down. But it’s never long term and never without compromise.   I honestly don’t remember what it is like to feel “good”.  For me, the daily symptoms I live with have become my “normal.” I learned to accept that for now this is my body and my life and I’m not going to let it get in the way of being a mother or achieving my personal goals.

However, there are times when my illnesses affect the way I interact with my kids or how much I can do, and that is a very frustrating realization to accept. 

There have been many times when we’ve been late for events because I wasn’t able to leave the house due to my ulcerative colitis, which causes a severe upset stomach and abdominal pain. It’s not unusual for me to go somewhere with my kids and spend most of the time running back and forth to the restroom. 

When my rheumatoid arthritis rears its ugly head, there are days I can barely walk because my knees fill up with fluid. This leaves me pretty much home bound until I get it drained. My kids understand my circumstance, but I know at times they compromise doing things they want to do.  

I feel tremendous guilt when I just can’t do something with them or for them. It feels like I am cheating them somehow.  For the most part, I suffer through my symptoms so they don’t have to miss out.  But it may result in me being more irritable and less patient with them. 

When I’m having a few good days, I tend to overdo it trying to make up for the days when I can’t do much.  When a parent has a chronic illness, it’s important to try to manage the illness, cope with the effects, and learn to ask for support.

Oftentimes family and friends are willing to help out if you are willing to accept the assistance.  I tend to be stubborn when it comes to this, but I’m learning that it’s not just about me, it’s about what is best for my kids too.  When my mom offers to pick up the kids after school and take them to her house for dinner so I can rest or when my dad suggests taking my son for an afternoon, I need to put my independent guard down and accept their help. Taking care of myself enables me to take better care of my kids and sometimes as parents we forget that.

Over the years, I’ve learned that stress management, eating healthy, and not over extending myself are the keys to managing my diseases. Everyday life does not stop for a parent when they are ill, so I do the best I can and take each day as it comes. I get through some days hour by hour.

My kids, now ages 14 and 11, are learning to become more independent when I’m going through my rough patches and they will even go out of their way to do things for me.  I know there are families out there living with much more serious conditions, so I am aware of that and thankful for the blessings I do have in my life.

If you are a parent living with a chronic or serious illness, there are resources out there to help. Search the Brandon Patch directory for community resources or  contact one of these great organizations:

American Red Cross

Care.com  (find resources in your area to help your family such as tutors, nannies, babysitters, housekeepers, etc.)

Big Brothers Big Sisters