Life can be unpredictable at a moment’s notice.
I was 35 years old and at the height of my 13-year career in banking. I finally reached a point where my work schedule was flexible enough to permit more time with my kids. I was even able to work on publishing my third novel.
That summer, I had planned family fun for my three kids, ages 15, 8, and 7, filled with visits to our favorite swimming places, amusement parks, aquariums, and endless movie theater dates. We were living our best lives — until I woke up one day with a new reality. It was a new reality that was foreign and frightening for myself and my loved ones.
It was July 29, 2012. We were supposed to celebrate the birthday of my then 9-year-old son, with a day of go-kart racing, arcade games, and cake. Instead, when I woke up that morning I couldn’t sit up or stand unassisted, and I had severe head pain, nausea, and dizziness. I landed in the emergency room.
My Chronic Illness Journey
The hospital staff suspected a stroke but quickly became baffled by the negative test results. No one understood why I was unable to move around without difficulties and why I needed assistance to walk. They referred me to an ENT (Ears, Nose and Throat) specialist, who began to delve deeper into what was causing my debilitating symptoms.
This was the beginning of seeing specialist after specialist and one diagnosis after another — a decade that would challenge my family’s resilience and bonds with one another.
In 2012, three months after I began experiencing my first of many symptoms, I received a diagnosis of chronic migraine. I explained to my children that my motor skills decreased to the point where I now needed help getting out of bed to move from one room to another and even assistance with feeding myself. I also had to explain that my neurologist advised me not to drive to keep me safe.
Next came my cluster headache diagnosis in 2014. I remember locking myself in the bedroom, bathroom, or basement to avoid terrifying my kids when I needed to cry or scream during my excruciating cluster cycles. They would happen around the same time every day — 11:15 am, 5:45 pm, and 11:20 pm — and would last for about 20 to 30 minutes for months at a time. I explained to my kids that it was another neurological disorder and that I needed to isolate myself until I felt well enough to play video games or help with homework.
Then came my fibromyalgia diagnosis in 2016. I told my kids, who were 19, 13, and 12 at the time, that my body was experiencing severe fatigue and pain. At that time, I was also doing physical therapy and taking a new medication that could help decrease the frequency of my migraine attacks and possibly allow me to feel well enough to work a few hours a week. It had been five year since I was able to work.
For the first time in years, my kids and I had hope. My kids were excited to see parts of their mom from before becoming chronically ill coming back to them.
A year later, I received my rheumatoid arthritis diagnosis. I wasn’t surprised with the news; a long line of family members have RA, including my sister and mom. I allowed myself an entire day to process everything and then spoke with my kids about my new diagnosis and treatment plan. The fact that we knew several family members who were successfully managing RA gave us peace of mind.
In 2019, I experienced heart failure, which occurs when the heart muscle doesn’t pump blood as well as it should — and, for the first time, I feared for my wellbeing and the wellbeing of my kids. It was so much harder to figure out how I could help my children understand the severity of my health — without frightening them to the point that they would want to camp out next to my door every night to make sure I was okay.
With each diagnosis, I knew my kids counted on me to be transparent. They deserved to know what was happening — and they looked to me for guidance, comfort, and reassurance. They deserved to understand why and how we were going to be a stronger team, even if I wasn’t entirely sure how things would change our day-to-day activities.
A New Reality
Being chronically ill is an unjust parallel realm of a life you once existed in. Your body is imprisoned inside an unrecognizable version of you while the old counterpart of yourself hangs by a thread hoping to return back to normal.
When things don’t return back to what they once were, the choice of how to navigate in a new world with so many uncertainties take center stage. For me, this has meant learning how to find acceptance, cancel plans, accept help from loved ones, and navigate mood swings — all while being open and honest with my children as we adjust to a new life together as a single mom with chronic illness.
Accepting Your Diagnosis
In order for your children to understand the state of your medical condition, it’s important that you have accepted your diagnosis first.
I admit it wasn’t easy to accept the information I received from my neurologist about chronic migraine. I didn’t comprehend how migraine disease could entirely alter my motor skills or ability to walk unassisted, but my vestibular physical therapist pointed out the brain is affected differently by each attack, which could make normal day-to-day activities more difficult.
It was those details I chose to share with my children to help them understand I was dealing with a health situation that was a little scary for me but that I’d find a way to deal with the changes to my body.
I always found it best to openly discuss any changes to my medical situation, no matter how hindering they may be. This allowed my children to see that I had not given up on living a good quality of life. It also built their confidence and reassured them that I would try to be the best possible parent for them regardless of the bad health days.
The first of many canceled plans happened on my son’s 9th birthday. I disappointed more than the birthday boy that day — my other kids (plus my nieces and nephews) were also excited about the fun festivities I had planned for them.
It’s never a good feeling knowing you are letting down multiple people — and, yet, it’s an unfortunate reality of being chronically ill. On most days, I’m wrestling with my body that wants me to stay bed bound.
Between my rheumatoid arthritis flare-ups, migraine attacks, and difficulty breathing because of heart disease, I need to prepare for those times when my chronic illness causes me to cancel plans.
For example, if I have to miss an event, my kids know that I’ll find someone else to go in my place, or they can wait until my health allows outings. Over the years, cancelling one plan after another has made my kids more resilient to unexpected changes.
Letting Your Kids Care for You
When people asked how I managed to take care of the kids while being chronically ill, I simply told them I have the support of an amazing team at home. My kids and I became stronger and even closer along my health journey. We were great teammates who watched out for one another by working together to find solutions that were best for our family life.
As a parent, it’s natural to want to take care of everyone all of the time — and to not expect the same in return. However, I’ve had to depend on my kids to help care for me. When my daughter was 2 years old, she would use a step stool to reach the freezer to get me ice packs for my migraine attacks. My teen daughter would drive me to some of my doctor’s appointments. My boys would help around the house, making sure we had clean dishes or bringing me a drink to take my medications.
Dealing with Mood Swings While Parenting
Pain has a way of setting off an array of emotions, including mood swings. The littlest sound or touch can irritate you. The medications can also cause mental insatiability. Regardless of what may be causing your emotions to be out sorts, it’s vital to let your kids know that you may be dealing with an unusual occurrence of moodiness.
I admit to snapping at my kids for turning the television louder during times when my head felt like it was about to explode during a migraine attack. But I also made a point to later explain and apologize for my actions. I want them to feel loved and appreciated for everything they do to help me and our household stay afloat.
10 Years After I Became Chronically Ill
Our decade-long journey has proven that our family can endure anything. There have been tears and frustrations. But despite the ups and downs and constant changes in my health, my close relationship with my kids has remained the same. I am truly fortunate to have three wonderful children who have grown into remarkable young adults who are empathetic. They continue to help take care of their mom, so I can live my best quality of life.
As for what we will be doing to celebrate my now 19 year old’s birthday? We plan to go to dinner at one of his favorite restaurants with cake for dessert followed by a trip to the movie theater. If for some reason plans need to be altered due to me not feeling well, we’ve decided there is the entire weekend to have birthday fun.
Be a More Proactive Patient with ArthritisPower
Join CreakyJoints’ patient-centered research registry to track your symptoms, disease activity, and medications — and share with your doctor. Sign up.