themighty logo

3 Things I Need as I Live Life Undiagnosed


In between pregnancies I have continued my chronic illness treatment journey. Some options available to me were a little riskier while pregnant, but some symptoms would vanish while pregnant. It has been an ebb and flow of symptoms over the last five years. Due to unforeseen circumstances, I have had trouble with providers and insurance from time to time, which hinders the diagnostic process. So along the way I have found myself being creative with my energy, due to the mystery of being undiagnosed.

1. I need a good start to the day with my kids.

It doesn’t matter how well I prepare to wake up at the same times as them, I am a sack of sand in the morning. I have tried rising before them, but in all honesty, chronic fatigue doesn’t get out of bed without incentive. Giving my body a chance to wake up slowly, while they begin stirring, is a gift to myself. So we began leaving granola bars and apple sauce pouches in the hall for our toddlers. Yes, yes, it’s messy sometimes…but this gives me a chance to rise without being angry or reactive.

2. I need to do something meaningful as an individual.

Lacking energy for more than “just a season” can leave you feeling unaccomplished or resentful of your circumstances. No matter your personality type, a prolonged hiatus from chasing your dreams or goals is depressing. I sit down with my husband and discuss my vision for the future. For example, why do I want to write? It makes me feel connected and useful. It feels meaningful. So my vision would be, “I want to connect in a useful way by sharing meaningful things with others.” (What would your vision be?)

3. I want a kick-ass marriage.

I want weekly date nights, I want late night talks, I want a healthy sex life, etc… but chronic fatigue makes our life look different than we would like it to. This is another great moment to create a vision, rather than just a plan. A healthy marriage is in the eyes of the beholders. There is no golden standard. There is no one way to achieve this. Using where I am, rather than where I want to be, brings us closer together. We put the kids to bed at a punctual time, we buy wine and chocolate for one another, we check in with one another earlier in the evening to gauge energy levels for intimacy, etc…communication and consideration make a kick-ass marriage.

It is not how I envisioned adulthood, marriage or motherhood, but this is my only life. Everyday I get to choose who I want to be, and I choose it over and over. I forgive the annoyance and frustrations that come with my limits; these feelings do not define me any more than my health does. Small, intentional choices have made a huge difference in my day to day life. I may not be able to keep up with who I thought I would be, but I’m doing my best with the situation I’ve been dealt.

We want to hear your story. Become a Mighty contributor here.

Gettyimage by: Gajus