If anyone would have told me in my 20s that I’d be writing about living with multiple chronic illnesses in my 40s I would have laughed. I’ve been experiencing various symptoms since the age of 10, but my flare ups were rare and never long in duration. Soon after my 30th birthday, I started feeling pain in my bones, muscles, and nerves, along with extreme fatigue almost every day. It was like someone had flipped a switch and then stuck it in the ON position permanently.
I received all of my diagnoses: psoriasis, fibromyalgia, psoriatic arthritis, ovarian cysts, and reoccurring abdominal adhesions right after the other within a 5-year period. It was like riding a never ending roller coaster with many sharp turns, loops, and life-threatening dips. No matter how well my doctors and I thought the ride would get, new twists returned with a vengeance. Dealing with so many conditions and symptoms at one time was frustrating, but I had to press on.
In the beginning of my chronic life, I believed I would get better, or at the very least manage my symptoms to function like I used to. My doctors and I were both to blame for this foolish belief.
Instead of researching my conditions, I believed my doctors when they said that pharmaceutical medications would restore my life. But one of my physicians confirmed what I didn’t want to believe to be true. I will never forget when my doctor told me, “This is as good as it gets.”
Hearing those words and accepting them are two different things. While I understood what he was saying, it would be many years before I could accept them and learn how to live a life that would always include some type of physical pain.
As time went on, my pain and depression continued to grow. My husband and children were able to sympathize with how I was feeling the best that they could, but I didn’t have anyone else who truly knew what it was like to live with a painful chronic illness. And the fatigue made it difficult to make and nurture friendships with other chronically ill people.
But one day I realized that the reason I had failed wasn’t for a lack of trying, it was that I was going about it in the same manner I would have before becoming chronically ill. Once I accepted that planned outings and phone calls were not the only ways to get to know someone else, I began to think differently.
That’s when I met other chronically ill folk on Twitter. This opened up a whole new world for me! The other chronically ill people and I could reply or ask questions at times when we were physically and mentally up for the task instead of feeling pressured to push through a social outing. The only downside to talking with others on Twitter was being confined to 140 characters per tweet. Wanting to express myself with more than a few short tweets, I began blogging.
When I first began blogging, I chose not to use my real name as I wasn’t comfortable talking about my struggles with friends and family. This was because my friends and family wanted to heal me. They weren’t ready to accept that this was my life and that nothing was going to change. I just couldn’t take one more conversation that was focused on how they thought I could heal.
I needed people who understood what it was like to live with chronic pain and could offer advice on coping, so coming up with a name was actually pretty easy. “Disabled” describes what my conditions have done to my body. As for “Diva,” I chose it because most people think disabled or ill people should look a certain way. The presumption is that we are frumpy, don’t wear makeup, or don’t care about stylish clothing.
Well, I love makeup, I love clothing and accessories (especially my Minnie Mouse ears), and I refuse to allow my illnesses to take that away from me. Just the other day, I arrived at the hospital for a colonoscopy with bright red lipstick on for no other reason than it made me feel pretty. Referring to myself as a disabled diva has helped take away the stigma that being chronically ill has a “look.”
Blogging as The Disabled Diva has helped me more than I could have ever imagined. I now have the opportunity to sort through my feelings and share my fears, joys, failures, and wins and I can encourage, sympathize, inspire, and motivate not just my readers, but myself to live the best life possible.
I’ve also been able to strengthen relationships with my friends and family. I no longer feel like I have to answer the same questions about my conditions over and over while trying to enjoy a social outing. Instead, I refer those people to my blog. It allows me to stay focused on having some much deserved fun instead of being reminded of my pain. I know blogging isn’t for everyone, but I would encourage every chronically ill person to find some kind of outlet to express how they are feeling. A creative outlet can help you process your feelings and may even help you better explain those feelings when talking with friends and family. The longer I held my feelings inside, the deeper my depression grew. By processing my thoughts and feelings through writing, I found it easier to express how I really feel or how I am doing to my friends and family. Now everyone I know knows me as The Disabled Diva!
Check out Cynthia’s blog to read more about her experiences living with chronic illness.