Chronic Illness- Changing Lives and the Relationships Around Them

Written by: Amanda Henderson, August 27, 2017

Lawrence and I just celebrated our 12th Anniversary this past Sunday. I was flipping through old photographs of our wedding and first anniversary, and couldn't help but compare the differences in what I thought our lives would resemble today, as compared to what it actually looks like. I was 30 years old, and so full of the hope and enlightenment marriage and family can bring. He was four years older and brought his two children into the relationship, and I was more than thrilled to include them. I was even eager to add our own kids. Unfortunately, our lives, as we had planned them, were simply not meant to be. There are many people in this boat, and I'd like to shed some light on some of the experiences that molded and shaped our lives while living on the outside of society's norms.

When we got married, I had a career in Graphic Design and he worked at the same company. We live in a small town outside of where we worked, so we commuted together, worked in the same building, and even ran errands and visited friends or family together. We shared most moments of the day, and we loved it. We bought a house, vacationed as a family to the 'happiest place on earth', and our dreams were coming true. Little did I know that the nagging pain and fatigue I was continually experiencing would be a game changer, as well as a life changer, instead of simply something I needed to get through.

I was seeking help and treatment from several doctors. I tried many different pills and plans- from western to eastern medicine and everything in between. Eventually, I began limping around on both feet, and my legs became so lax, it was difficult to pick them up at all. I'll never forget the day that I was laboriously walking down the hallway at work to the printer, when my legs became heavy as wet logs, and I knelt down in the aisle, and crawled back to my desk. My husband found an office chair with wheels on it to cart me out to the car, and we hoped I would wake up healed. My hopes were dashed, yet again, and I found that using a walker to get around, and an electric wheel chair at work, could get me where I needed to go for the time being. It sent us on another wild goose chase for answers, and more fruitless testing than I care to wish on my enemies. Seven years after the wedding, I was diagnosed with Ehlers-Danlos Syndrome, hypermobile type, and continue to add comorbidities and diagnoses as we go. There is no cure, only symptom management.

I lead a very different life from the one I had. My house was pristine, my meals were well planned, and I loved taking care of family, traveling regularly, and having a career. Now I simply manage heart rate, food intake, Dr. appointments, energy and muscle use to be efficient as possible. I do minor amounts of design work from home, and volunteer at church now and then. I feel myself deteriorating as this disease ages me even further, and find myself able to do less. My husband has learned that it's OK to go and hang out with his friends sometimes, since I don't expect him to stay at home with me while I'm busy recuperating.

He has always been my rock through all of this- his loyalty and faithfulness have never wavered. He doesn't treat me as less of a person, and his feelings towards me have not changed. Though times have been tough, and the burden of my body and medical situation have been relentless, he has never questioned our vows or threatened to leave me. I have mentioned I should leave him a time or two, because it isn't fair to him (either of us, really) and I disdain the idea of holding him back or messing up our finances any further. The toll taken on ones' mind trying to wrap around the differences that occur with chronic illness can be daunting. It's just impossible to keep moving forward merrily charging through challenges on this grand of a scale, at times. But, we've stuck it out, and we're both glad for it. No one said life would be easy, and Lord knows I've never expected that, but when the choices you are making seem congruent with that of an onward and upward lifestyle, it's all the more harsh to have the rug pulled out from under you.

I've read several instances of chronically ill survivors whose family life falls apart in times of trouble, and I can relate to how it is possible. I feel for them, I really do. While there are times I've felt alone, misunderstood, or that my better half or other family members are apathetic to my needs, they are still here- ever present. For that, I am grateful. Even during those times that I may feel it would be easier to get through it on my own, who am I kidding? To where would I float and end up if I didn't have a rock to cling to?

Though life's difficulties can wash out our current path, and send us scrambling down darkened alley ways and grown-over tracks, it truly is those moments

that having warm bodies and fresh ideas or perspectives can be the buoyancy required to struggle back to the surface and breathe deep breaths... and keep on... breathing, together...