Lana Barhum lives and works in northeast Ohio. She is a legal assistant, patient advocate, freelance writer, and mother. Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Mango Health, and The Mighty. For more of her writing, visit her website at https://lbarhumwritingportfolio.wordpress.com.
Advice on Receiving a New Chronic Illness Diagnosis
When you are a kid, no one tells you how hard adulthood will be. They don’t point out the perfect life and tell you how to go out there and get it. No one tells you about the hurdles and curves, or the sadness and adversity. They sure don’t tell you that rheumatoid arthritis (RA) and fibromyalgia can strike when you are a young parent in your early thirties. They don’t tell you how tough being a single parent with illness is, or that you have to worry about your family’s income if you get seriously sick, and there is no one around to help you.
No one ever warned me about the obstacles life and chronic illness would throw, and maybe, that was a good thing. After all, despite all the challenges and stresses of life and chronic illness, I do know I am happy most of the time.
To be honest, I don’t have an articulate way to explain what it was like going from being an active young mother to being someone with two debilitating and crippling diseases. It was just downright awful and to make matters worse, my illnesses, in some part, contributed to the dissolution of my marriage and me becoming a single parent.
It might sound like I am feeling sorry for myself because there has got to be far worse things than parenting alone with chronic illness. But when you cannot do what want and need and your body doesn’t cooperate, it can be extremely devastating. And there are some pretty horrible days that leave me in a state of mourning for the person I used to be.
While it has now been over eight years, I do recall taking my diagnoses pretty hard and feeling a whole lot of guilt, anger, and resentment at myself and at others. I went from being someone who took care of everyone to, sometimes, needing a lot help, and it was a difficult blow. Today, however and for the most part, the emotional aspects have lessened and, mostly, I am in a good place. Moreover, both my conditions are well-managed and I am down to one or two major flares a year.
These are three pieces of advice I can offer to someone receiving a new chronic illness diagnosis, or just simply struggling due to a change in health.
Manage your emotional health. I cannot take care of my physical health if I am not managing my emotions, am depressed, or having sleep issues. In fact, all these things will worsen pain, fatigue, and other chronic illness symptoms. It is also a good idea to reach out to others dealing with similar health challenges. And if you are struggling with deep sadness, worsening anger, and other lingering depressed feelings, talk to a therapist who works with chronic illness patients.
Be Your Own Advocate. Question everything. Do your research. Speak up for yourself. No one else is going to do this for you so embrace being your own advocate as if it is your favorite passion. I had challenges with this one, because I wasn’t someone who generally spoke up, but I learned the hard way that my overall well-being depended on it.
Tell Your Story. I began blogging shortly after I was diagnosed and writing became a positive personal therapy for me. Not only has it helped me to release painful emotions and promote my peace of mind, it has also connected me with others struggling with similar health concerns. So, I tell my story – in writing and in person – to anyone who will listen because it is a reminder that none of us are alone in this experience and we are all capable of being better and stronger. Don’t be ashamed of your story and tell it proudly, whether in a formal setting or simply to a friend.
I was told I’d be disabled by now, but maybe by the grace of God, or by my own hard work and determination, I continue to surprise myself. I used to think I’d never be okay again, but, despite everything, I am. When life handed me lemons, in the form of chronic illness, I made a choice to make the best of my situation. And you can too!
Thank you Lana for sharing your inspiring story!
If you have a story to share with our readers about participating in a clinical trial, overcoming adversity, or living with a chronic condition, please let us know. We’d love to have you guest blog for us. Guest blogging helps others outside of your disease area learn about your struggles and discover your passions. We will help promote your website and social media accounts, as well as your favorite advocacy group. Contact us to get started sharing your story now!