Lana Barhum is a legal assistant, patient advocate, freelance writer, blogger, and single parent. She has lived with rheumatoid arthritis and fibromyalgia since 2008 and uses her experiences to share expert advice on living successfully with chronic illness.
Chronic illness poses a variety of limitations and challenges because being sick physically makes you emotionally sick as well. How can you achieve balance to take care of yourself? How do you balance your emotional needs against your physical ones?
Helen, Carl, and Michael are three amazing individuals who share what they have learned about taking care of themselves and managing the needs related to their chronic illnesses.
Helen is a 34-year-old mother, wife and teacher, who went from being healthy one day to having to navigate life with chronic illness when she was diagnosed with rheumatoid arthritis (RA), a chronic inflammatory disorder, often affecting the small joints of the hands and feet. Helen’s husband, Eric, a truck driver, is often away from home for long periods.
“I suddenly was one of millions of Americans battling chronic illness. Even the days and weeks that I am symptom free, I must live with the threat of flare-ups, as well as how I will care for my children when my life is suddenly interrupted by the demands of RA. And with Eric away all the time, I don’t have much help.” -Helen
According to Helen, handling chronic illness is all about learning to strike a balance between taking care of yourself and the people that you love.
“You can’t keep asking ‘why me’ or ‘what if things get worse?’ You have to live your life continuously aware of your health and what things you need to do to rest, work and have fun. It is also vital to focus on feeling and living well while maintaining a positive attitude.” –Helen
An important hurdle to overcome when diagnosed with a chronic disease is living with and managing the changes imposed on your life. Maybe you were a hardworking and successful employee and a busy parent, before chronic illness. And while these things are still part of your life, chronic illness changes the rules and requires you to adhere to a new reality where these tasks are even more difficult.
Carl, age 42, from Syracuse, New York, is a widower and single father to seven-year-old twins, Joey and Katie, and is holding a full-time job in the IT field.
“A year after the twins were born, my wife, Maggie, became depressed and it was not long after that she took her own life, leaving me to raise our children alone. A few weeks after the twins turned five, I was dealt another blow when I was diagnosed with ankylosing spondylitis.” –Carl.
Ankylosing Spondylitis, or AS, is an autoimmune form of arthritis that affects the spine. And for Carl, living with AS means attempting to make life as normal as possible for his children.
“My family life no longer resembled anything normal and that was especially hard for me considering what I had already been through with my wife’s death. But here I was, finding a new normal all over again. I used to be active and athletic and coached both hockey and football and now, I can barely play with my kids. At home, it’s either the pain or the lack of energy or both that keeps me from being able to manage the simplest tasks. Making dinner can seem like a lot. And managing AS, that is a lot of work, but I am learning to put my needs first. Fortunately, I have been blessed with an amazing family willing to help at a moment’s notice. Having them around has made acceptance of AS much easier to bear.” -Carl
Have a Support Team
Just a year into his marriage to his high school sweetheart, Maggie, 23-year-old Michael, an auto mechanic, started experiencing extreme fatigue, joint pain, shortness of breath, facial rashes, and headaches. He was soon diagnosed with Lupus, a chronic inflammatory disease where the body’s immune systems attacks its own tissues and organs. Lupus is characterized by a facial rash, resembling the wings of a butterfly across both cheeks.
Upon being diagnosed, Michael worried about his newly pregnant wife and turned to a Lupus support group. For so many, like Michael, disease specific groups are a great outlet to discuss their conditions freely.
“I started to ask some hard questions. If I became disabled, who would take care of my family? What if my family lost me to Lupus complications? At the advice of a co-worker, I joined a local support group for men living with Lupus and I found I wasn’t alone in my anxieties and fears. Especially in the early days after my diagnosis, my support group helped me to see perspective and gratitude instead of anger.” –Michael
A mental health professional can also help since depression is one of the most common complications of living with chronic illness. Patients with chronic illness have to adjust their lives, aspirations and careers. At least 25% of people living with chronic illness also suffer from some kind of affective disorder, such as depression, bipolar disease or anxiety according to a research study out of the Department of Psychiatry University of Queensland, Australia.
Michael shares that most of the time he is upbeat and happy but sometimes, he feels a cloud of fear around him. “I go through days and weeks symptom-free but the minute I feel a flare coming on, I panic and struggle to fight the darkness. But I have a great therapist and I take medication to keep my moods stable.”
Michael also often feels guilty about what his illness means for Maggie and their two-year-old daughter, Grace. “I am the one that might live with this disease and the medications and infusions that go with it but my family has to watch me go through all this. Maggie works long hours as a nurse in addition to taking care of our daughter, and when I have flare-ups, I can barely care for myself.” Despite his guilt, Michael explains that Lupus has only made his marriage stronger. “We have learned what unconditional love is and how to navigate a life that isn’t necessarily ordinary. Maggie and Grace are my biggest supporters and I am so lucky to have to them.”
Part of Everyday Life
Despite the many problems that chronic illness brings with it, Helen, Carl, and Michael believe their experiences have bettered their lives and allowed them to embrace life to the fullest.
Helen shares that her needing to be there for her family helps her to be proactive about health. “It is amazing how much my symptoms are improved because I focus on eating healthy and preparing healthy meals for my family,” she says.
Carl says being sick has helped him to understand how important managing stress is in all aspects of his life. “I find that stress management is the single most important gift I offer my children. By managing stress through relaxation, rest and breathing techniques, I set an example for my twins and I can be the parent they need and deserve.”
Michael shares that he is happier than he has been in a long time. “I thought being sick was the worst thing that ever happened to me but it has actually been a blessing. It is makes me strive to make each day the greatest with my family.”
Helen, Carl and Michael have made chronic illness and adjusting a part of everyday life. No matter how hard life gets, they have figured out how to make things work and living with chronic illness has become second nature. The flare-ups come and go but they appreciate life, especially when their bodies aren’t attacking themselves. And being sick has become a process that they don’t think about—it’s not necessarily a negative or positive experience, it’s just a way of life.