How I Balance Parenting with an Autoimmune Disease
I have a husband, two young children (ages 7 and 3), a job, volunteer activities and an autoimmune condition (Ankylosing Spondylitis) and secondary fibromyalgia. While I prefer not to let me autoimmune disease get in the way of my life, unfortunately, they do sometimes (OK, more than sometimes). I wasn’t sure if I should share what it is like to parent with a chronic illness, but then I remember that when I am in a particularly difficult phase, I like to read how others cope.
Twenty percent of the population has an autoimmune disease. There are so many different forms of autoimmune diseases that it can be difficult to pinpoint a diagnosis. In many cases, once you have one autoimmune disease, you are predisposed to others. The medication to treat many autoimmune diseases suppresses your immune system, making you prone to illness and infection and can increase your risk of cancer. Autoimmune diseases are difficult to live with, yet there is little focus on them.
I was an extremely healthy person before having a child. I ate well and exercised regularly, despite working long hours and traveling frequently for work. I only went to my general practitioner every year or so for allergy issues. I had a healthy pregnancy and a relatively normal delivery (long, but not terrible).
A few months after my oldest son was born, I started experience terrible pain in my lower back and hips. My general practitioner sent me to physical therapy since it can be common for new moms to experience back pain with young children. Two months later, the pain was getting progressively worse and I noticed an almost two inch bald spot on the side of my head. My amazing doctor immediately tested for autoimmune disease and I came up with markers for an autoimmune disease.
Shortly afterwards, I saw a rheumatologist and he diagnosed me with Ankylosing Spondylitis. I am really fortunate to have amazing doctors. Many people go years before getting an autoimmune diagnosis, particularly women. Many of the symptoms of autoimmune conditions are similar to what new moms go through – extreme exhaustion, pain, headaches, etc. Some doctors dismiss them as stress-related issues and don’t dig deeper.
I am now almost eight years into having an autoimmune disease. I have gone through terrible flares. I have seen various specialists since my condition is systemic (affects multiple parts of the body) and according to my rheumatologist, I have an “aggressive form” of my autoimmune disease. I have endured an un-medicated pregnancy and am a parent to two children.
I have had four x-rays, five MRIs, a nerve function test, lung function testing, an EKG and echocardiogram, three minor surgical procedures and have had to give myself injections weekly and biweekly, as well as had medication administered via IV infusion. I have also learned my limitations. I appreciate the healthy days I have now and realize that the future is unpredictable – it is for everybody! But best of all, I continue to survive and I think I’m a better mom for it.
Lessons From A Mom with an Autoimmune Disease
I used to think I wasn’t “sick enough” to share what it’s like to live with a chronic illness. I don’t spend my days in bed. I power through my days and for the most part, keep my illness invisible. Most of my acquaintances don’t know I’m ill. Only my true friends know how bad my days can get.
Some acquaintances may think I’m lazy or not “committed enough.” That’s OK. I’m a recovering type A people pleaser and the one thing I have had to adjust to is not caring what other people think of me. They don’t know me or know what I live with.
My favorite quote:
It has taken me a lot of time, but I have finally gotten to the point where I stick to my priorities. I used to work crazy hours and give my energy to extended family and try to live like I was healthy. The result? My kids got the leftovers. I was too tired to engage with them at the end of the day and just counted the minutes until bedtime.
I have gotten much better about saying no and putting the bulk of my energy towards my own little family, rather than everyone else. I volunteer less. I attend less functions that aren’t critical. I do what it takes to give my own kids the best of me.
I Let Things Go:
Along with prioritizing my family, I have learned to let unimportant things go. My house is a mess a lot of the time and our meals are very simple. I hate clutter and want my house to be super neat. Clutter stresses me out. The challenge is, I have two kids with lots of toys who aren’t the best at cleaning up.
I do the best I can to pick up and keep things neat, but I don’t let it make me crazy. It can be difficult for me to pick things up off the floor – the bending is tough on my back and I take medication that makes me dizzy and nauseous. When I’m having a good day, you can tell by my home. You can also tell when I’m having a bad day or week.
I Make Memories:
While no one knows what the future holds, I am intimately aware that my health is a bit out of my hands. Since I don’t know what my body can handle in 5 or 10 years, I work really hard to create memories with my kids that they can look back on later.
It may be really difficult for me to take the boys to the zoo, but I do it now because I am able to walk upright, right now. I may be in a ton of pain afterwards, max out on pain medication and have a rough few days afterwards, but I can walk and I want my boys to remember going to the zoo with mom.
I definitely push myself farther than I should on many occasions and suffer the consequences for days afterwards, but for the benefit of my kids, I power through whenever I can.
I Promote Independence:
When I was pregnant with my youngest, a mom from preschool asked if I was struggling with carrying my four year old. I looked at her like she had two heads. I hadn’t carried my four year old since he was two. In fact, I taught him how to climb into the car and his car seat when he was tall enough to do so.
This doesn’t mean I don’t snuggle my boys. I do, all the time. However, I snuggle them on the couch. They climb on my lap when we sit together on the couch. I give millions of hugs. I just don’t carry them. I teach them to do things for themselves as soon as they are physically capable to relieve myself of the job.
I Appreciate and Focus on Health:
Until I got sick, health was a given. I never appreciated my good health because I only knew health. My grandmother lived to be 94 and was healthy until the last year. My parents are both in good health. Outside of a few colds, I was healthy…until I wasn’t. I can’t express enough how important good health is to your wellbeing.
I know appreciate my health and do whatever I can to maintain good health. I eat well and feed my family a mostly healthy diet. We don’t go crazy, we eat our share of restaurant meals and pizza, but when we’re home, if I’m cooking, there are lots of veggies incorporated in our meal. We also snack on fruit for the most part.
Whenever I can, I try to move my body. The fibromyalgia makes it extra difficult to exercise, but I try to walk whenever I can. There are days where I can barely move. I accept those days and honor my body. However, whenever I feel well, I try my best to move my body. The fact of the matter is, with two young children, I move quite a bit, even if I don’t feel well enough to do so.
I Use Hacks:
I don’t let my limitations stop me. I just find different ways to do what I want. I used to do my makeup sitting on the floor in front of a mirror. It has become increasingly difficult for me to get off the floor so I just bought a vanity. I now sit at my vanity to do my makeup and put my shoes on.
I enjoy doing puzzles and playing with trains on the floor with my three year old. To accommodate, I bought a floor pillow so that it’s easier to get up. I’m currently in the market for an affordable, yet stylish, bar stool because it is difficult for me to stand for long periods of time when I’m cooking. Just because something gets hard, doesn’t mean I have to give it up. I find hacks to make things work for me
I also ask and accept help when I need it. I used to think I can do it all but now I know that I’d rather do what I can well and get help with the rest.
While I wouldn’t wish a chronic illness on anyone, and I’d much prefer being healthy, I have learned to live better with my limitations. It has taken me a long time to learn and I have had some difficult flares resulting from an unhealthy, high stress lifestyle, but I have finally come to terms with living with Ankylosing Spondylitis.
It takes some things away from me and the kids, but it doesn’t take away everything. I hope that my positive way of dealing with my illness will teach my boys resilience and strength. If nothing else, they currently think their mama is a rock star.