Chronic Illness and Financial Guilt

When I am asked if a glass is half empty or half full, I say, “At least we have water.” I see positives in most situations. Each setback can be a redirection. Frustration can lead to inspiration. Life is neither good or bad.

Most people like uplifting disability stories. They want hope. Positivity in the face of overwhelming odds.

And I support all that.

I feel the pressure to be happy, to wear a brave face and smile despite circumstances. After all , isn’t it best to be happy? And our thoughts define our world, so I should think happy thoughts. I get that.

I also support discussing the very real challenges that come with disabilities. I want to give our stories the dimension that we are warriors in many ways.

Health can be the beginning of our stressors. Movies and popular culture may focus on overcoming physical limitations, running marathons or climbing mountains. However, our challenges may be much more mundane. People may believe that most of our energy goes into doctor appointments, wellness, nutrition, self-care. Sprinkle in doctor appointments, braces, surgery, and recovery. Then a little fundraising, awareness, fighting towards a cure… Basically, life centered around care.

However, my life has so many more dimensions. Many days, my health becomes a distant priority after caring for children, chores, running my photography business.

Chronic health challenges cause fallout in all areas of life. Relationships, friendships, finances.

Financial fallout is enormous. We just finished taxes. My husband is anxious because we made “less money than ever.” I went from full time teaching to part time, to teaching enrichment classes, to no teaching at all. I’ve lost work every year for the past three years. I had to ‘retire’ ten years ago. I’m trying to build another business, but running a business is also hard work.

People may think that disability benefits solve financial hardships. I am so very grateful for my disability benefits. However, they are nowhere near what I could earn with full time salary. They help. But they’re a small portion of what I earned prior to my health challenges.

Meanwhile, the guilt overwhelms me. I feel responsible for this difficulty. If I could work, if I could reach my potential, if I didn’t have these crazy limitations… If only.

I know these thoughts are useless. We can all cast blame for our circumstances outside ourselves.

With disabilities, though, it’s frustrating to know that I went to school. I planned a career. I worked hard. I didn't plan to be sick for my entire life. I wanted meaningful occupation.

Well intentioned friends suggest that I get a “regular part time job.” I have a Master's degree and teaching credential. I should be able to find a job, right? One that works around a school schedule since I’m the primary childcare provider, that can accommodate flares, that doesn’t create the “burn and crash” cycle where I accomplish tasks, yet recover for days afterwards… Not as easy as it sounds.

I start feeling like an anchor that drags down my family right alongside me. It’s hard not to think, if only I were healthy…

And I see how being unable to work impacts my family. I have to tell my kids that we don’t need to go to the movies. We don’t need new clothes. After all, t-shirts make wonderful pajamas. I don’t plan trips or adventures. I cook small portions of fish or meat for the kids and say I feel like cereal for dinner. I slowly suffocate under the weight of never spending money…

Pretty grim, actually. Fighting the undercurrents today, fighting to stay up in the sunshine where everything can turn around so quickly, where I can build a community that values my art and supports my creativity.

The limitations are not limited to health issues.

The world shrinks. The guilt compounds. And then the future looks dark.

At least we have water.

Always I come back to appreciation for important things. We are here. We have a safe, beautiful home (even if it’s messy). We have supportive family and friends. We have so much.

And the fears and anxiety are real. The guilt is real. The limits are real. The stress. Very real.

But sinking into the darkness won’t help.

I need to build. Believe. Hope. Yes, limits are frustrating. The guilt is huge. I also get to show my kids that stuff isn’t what matters. Being together matters. Time matters.

We get to share this story. With all the challenges. And I won’t fuss about that at all. That bring infinite gratitude.

We have plenty of water after all.

Though I want to share the message with the world- having a disability is more than healthcare and accommodations. It impacts our lives in so many ways. Quality of life can be improved when we care for the whole experience of living well with a disability. I don’t have answers. I do believe in discussing ideas. Change is possible.

*my experiences and chronic illness and CMT (Charcot Marie Tooth) are mine and mine alone. They are not meant to represent everyone’s path. Wishing everyone wellness and prosperity!