Being a good parent means taking care of yourself too. These tips can help you do both.
It only takes one Google search to realize that not very many people are writing articles or books on single parenting with chronic illness. And when you are looking for answers and can’t find them, parenting alone with chronic illness could be confusing and scary.
Whether you are a single parent by choice or by circumstance, you know that single parenting brings with it many unique challenges and joys. Many of us feel as if we are just muddling along day-to-day and getting it wrong. Add chronic illness to that scenario and single parenting suddenly becomes even more complicated.
Doing it alone
In 2008, shortly after my youngest child was born, I was diagnosed with rheumatoid arthritis, an autoimmune disease in which the body’s immune system attacks the joints and organs. Not…
I was in the waiting room dreading yet another appointment with my rheumatologist. It was nine months prior that I was diagnosed by my primary physician with rheumatoid arthritis (RA) and I didn’t know what my doctor-patient relationship should look like. At that third appointment with Dr. “A,” I determined it was time for me to find a new doctor to treat my RA and fibromyalgia.
The Red Flags
How did I know when the time was right to find a new doctor? Here are the seven red flags that helped to make that decision.
My doctor did not listen to me. Often times, it felt like Dr. A was not listening to my concerns. She would interrupt me or even repeat the same questions she previously asked. Moreover, at each visit, she seemed uninformed about my health and why I was there. It was as if I was seeing a new doctor at each appointment. Moreover, she refused to change my medications despite the side effects I endured. For example, I brought to her attention that my vision had worsened since I started on Plaquenil and she refused to acknowledge that this was a side effect of the medication and insisted that I continue taking it.
I felt that she did not believe I was sick. My doctor was a rheumatologist and she still would not attribute some of my symptoms to RA. She would suggest things like stress and hormones. Further, even though she had diagnosed my fibromyalgia, she refused to prescribe anything for it. She told me to lose weight and change my diet. I could not understand the reasoning behind her thinking and it made me skeptical to share with her how I was feeling. Under her care, I was not getting better; I was getting worse.
The American Academy of Pain Medicine reports that more than half of Americans live with chronic pain. Furthermore, at least 40% report that pain interferes with their ability to work and enjoy everyday life. So how do you stay productive when pain is a regular part of your routine? Patient advocate Lana Barhum shares five tried-and-true tips.
Don’t put it off. Putting projects off until the last minute is often tempting for everyone. But procrastinating is an easy way to find yourself overwhelmed. Break down major projects into smaller, discrete tasks, then approach each task one at a time. Finishing a task – no matter how small – not only helps you feel successful, but also generates momentum toward the next task.
Life with chronic illness is unpredictable, and I never quite know how I’ll feel the next day. Doing a little bit of work each day makes it easier to smooth over any interruptions that chronic illness might cause. When possible, getting started well before deadlines is generally wise, too.
Anger is a natural response to dealing with chronic illness frustrations. But it’s important not to let anger to prevent you from living your best possible life. Speaking from experience, rheumatoid arthritis and fibromyalgia advocate Lana Barhum shares four healthy ways to manage chronic illness anger.
Chronic illness came into my life when I thought I had my life in order. I was 32 years old, mother of a nine year old and a newborn, and looking at law schools. When my life was altered by rheumatoid arthritis (RA) and fibromyalgia one day, I became angry at a life that no longer resembled mine.
I was angry because I was suddenly sick with health limitations. Because of the loved ones who I felt would never understand. Mostly, because I felt like there was unfairness.
You are allowed to be angry sometimes. What is important, however, is that you don’t allow anger to take over and negatively impact how you live with your disease. If you experience anger toward chronic illness on a regular basis, here are four ways to be proactive about keeping it to a minimum.
It was 1998 when I first started having panic attacks. Back then, I didn’t know what they were. But considering how difficult my life was at the time, they were expected. I recall having a feeling that something was about to go wrong and then the sweating, heart palpitations and shaking would start. It felt like I was having some kind of health episode – maybe a heart attack or stroke. It was ridiculous because I was only in my 20s!
While the episodes would always pass, they often left me shaken trying to grasp what had happened and what was happening to me. Back then, I had not yet been diagnosed with RA and fibromyalgia. It would take another ten years for that to happen. The panic attacks got more and more frequent and they continued for years.
I got treatment but nothing helped. I remember having to go outside in the dead of winter because I was struggling to breathe and sweating like crazy. Emergency room visits involved lots of testing and no answers. One day, they just stopped. I don’t know when or why but they did. Maybe, it was because of the medications I was taking to treat RA and fibromyalgia or maybe, it was the years of therapy, but they stopped and they stopped for years.
The anxiety and panic attacks have recently started up again and have been happening for a few months now. It seems like there is no end in sight. I know what they are but it doesn’t make them any less difficult. In the past, stressful events in my life triggered them and that is why I am struggling to understand them now. I am not dealing with anything stressful. Granted, I don’t do well in crowded or tight places and struggle with fears of lack of acceptance and failure, but I have learned to avoid these things or manage them appropriately.
I am frustrated that I trade one ailment for another. I just found out the pre-cancer cells are gone and that they won’t probably won’t return and that should be cause for celebration but I am struggling to deal with something else. I have accepted RA and fibromyalgia and outside from a few flare-up episodes throughout the year, I consider myself doing well. My worries as single mother are not new. Any other ongoing difficulties that I have endured are the norm. I accept them. But why this? Why now?
I always told myself asking why didn’t give me any solutions. The best I can do right now is to work with my doctor to look for solutions and to manage each panic attack as it comes. What other options do I have?
What’s your diagnosis journey? Our patient advocate Lana describes hers.
If you were reading a book or watching a movie about a person with a disease, the main character’s chronic illness would have some dramatic beginning: a fall, an accident, a lump, or a call from the doctor about a test result.
But in real life, chronic illness doesn’t always work that way. In fact, most of us got sick gradually and then suddenly. We usually can’t pinpoint an event in our lives when the onset of symptoms started.
What do you do when life hands you a life-altering diagnosis?
You redefine everything you know.
You have to if you want to improve your physical health and emotional well-being. Along the way to your new normal, you will find out how to make new choices and learn from past ones. Most importantly, you will come out stronger and more in control of your medical outcome than you ever thought possible.
Normal isn’t going to return even if you find a successful treatment plan and even if your pain levels are managed. Normal stopped when you weren’t looking.
You have been through a lot pain-wise, diagnosis-wise, and life-wise. The people you expected to be there for you weren’t. You had to change careers or life plans, or you gave up your favorite activities. Life has changed and nothing remains the same, and your life will continue to change.
Are you prepared to redefine normal if your health worsens or if a major health event happens?