You might know supermom. You might even be her. I am—well, I was Supermom until chronic illness forced me to take off my invisible cape.
Once upon a time, I had a secret that few people knew. Behind my perfect façade, I was sick and exhausted. I was losing sleep, setting highly ambitious schedules and goals, and overwhelming myself—all things that aren’t a good idea with rheumatoid arthritis (RA) and fibromyalgia.
The natural law of “something has to give” eventually took its toll on me. And I realized I didn’t have the ability to bend time or do things without effort. I was a just a mom with a chronic illness and no superpowers.
A different kind of super parent
Raising children when you are also living with a chronic illness makes you a different kind of supermom or superdad. Every day you deal with symptoms that impact your mood, energy, and physical well-being—all symptoms no one can see. It might be difficult to give up control of your super-parent duties, but something has to change or your world will come crashing down.
Let yourself off the hook and stop beating yourself up for not always being able to live up to the ideal you once established for yourself. You have to give up the super-parent narrative and the idea that you can do it all.
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?
When you live with chronic illness, some days are just harder to get through than others. The ups and downs are like a never ending rollercoaster of pain and emotions. These make living with chronic illness difficult and the lack of understanding amongst family, friends, co-workers and even strangers is a bitter pill to swallow. You often have to explain the physical and emotional aspects of your illness and often, it seems impossible to define the obstacles you face daily.
At times, you feel isolated and uncertain and you may feel hesitant to seek support. On days like these, it is important to remember you are not alone. There are people all over the world – even down the street – who are facing the same challenges you are. These people have their share of bad days and they understand your frustrations, fears and concerns.
Everyone has good days and bad ones. The good days are the days where you pain levels are controlled and you feel rested, productive and in charge of your body. The bad ones involve increased pain, fatigue, lack of focus, the inability to get things done, and feeling defined and controlled by your disease.
While all the days cannot be good ones, the goal is to have more good ones than bad ones. You can plan ahead and do all the right things – eat right, take you medications, rest, etc. – but the disease can still take over. Your symptoms flare up and you are just too tired and in too much pain to do anything. This happens from time to time. It is just part of living with chronic illness. Unfortunately, you cannot ever predict how many good days you will have and when they will show up. And if you overwork yourself or overdo things, the good days don’t seem to last.
Chronic illness is unpredictable. There is not much you can do except concede that there are ups and downs and good days and bad days. You must learn to adjust and adapt to the moments when your disease brings you down. And remember, just because chronic illness is part of your life, it doesn’t define you and you can be flexible in managing the ups and downs and have more good days than bad.
Learn how to tame your worries about your health with these coping techniques.
Most of us worry about our health because we have loved ones to care for, we don’t want to be dependent on anyone, and we don’t want to give up the things we love. But when you have a chronic illness, you have even more to be concerned about regarding your health. You might feel angry, helpless, and even afraid.
I consider myself an expert on the fear brought upon by rheumatoid arthritis and fibromyalgia because I have learned to overcome and manage my worries alongside my health challenges for the past eight years. I also know that being afraid is one of the most common reactions to forced changes, but it isn’t something you should let consume your life.
7 ways to overcome fears about your chronic illness
1. Do your research
People are afraid of what they don’t know. From the moment of diagnosis, invest time in understanding your symptoms and treatment options. Let your diagnosis be an opportunity for you to grow and learn more about your chronic illness, your body, and all the ways in which you can have a full and productive life despite your health issues.
2. Find the right doctor
When you have a chronic illness, the relationship with your doctor is one of the most important relationships you will ever have. A doctor who doesn’t take you seriously, doesn’t listen to you, isn’t knowledgeable about your disease, or gets easily frustrated with your questions will only worsen your fears and even your symptoms. The right doctor for you will act like your partner in your healthcare. Once you find that person, both your health and outlook on life will improve.
3. Know your life is not over
You are scared and might think your life cannot go on unless you can regain the health you had before chronic illness. Many things will change, but know that your life is not over. While it may be discouraging to see others do things you can’t, the ultimate goal of life is to be happy for ourselves and others. It is okay to grieve, but remember there is more out there. Know that ultimately you will be okay and won’t feel so overwhelmed by the challenges.
Do you know that the best medicine for chronic illness is laughter?
A giggle a day can help you to cope and even reduce your pain because it promotes relaxation. Further, laughter releases feel-good endorphins that people living with pain really need.
Recent research has found that laughter holds great benefits for people who live with pain and illness. But, as you know, living with illness and pain isn’t fun and finding reasons to laugh can be difficult.
Here are nine ways to laugh and be joyful despite chronic illness.
Don’t take life too seriously. Chronic illness can bring with it challenges that can get the better of you. When you start stressing about your challenges, it is hard to find solutions. If you focus on not taking life and challenges too seriously by laughing rather than stressing, you give yourself a confidence boost that can help you overcome hurdles. Smile, laugh and don’t be too critical of yourself.
Find humor during tough times. There will always be situations that are hard and are no laughing matter. But most situations are only as complex as you allow them to be. So, the next time you find your stress getting the best of you, allow yourself to laugh over the things you have no control over. By doing so, you give yourself the opportunity to see humor and blessings all around you.