Tuesday, October 1, 2019

Looking Back On 12+ Years of Chronic Illness (RD Blog Week #2)

When I was diagnosed with lupus and RA 12 years ago, I thought my life was over. I was in my first year of graduate school. Professors and my doctors told me that I should drop out of school. I didn’t listen. But I’d be lying if I said that having lupus and RA didn’t change things for me. They definitely did.

Deciding that I didn’t want an academic career was a difficult choice, but one that I made. I knew I wouldn’t be happy or competitive in that kind of environment. It shouldn’t be that way, but at least when I was preparing to enter academia, it was.

Getting a second master’s degree in health advocacy  was another choice that I made. Looking back, I don’t regret anything (except my student loans), but I do wonder if things would be different, or if I’d feel the same way I do now.

Getting my first full time job after being a student until the age of 30, buying a house, getting engaged, getting married, and considering starting a family, are honestly things I couldn’t have imagined 12 years ago, when my life seemed to be taken over by lupus and RA. All things chronic illness.

Some things in my life have clearly settled, but in terms of what I want out of a career hasn’t. I’m trying to figure out where I belong and where my skills are best suited. I’m doing my best at maintaining a full-time job, but I’m interested in alternative careers.

I’ve worked so hard to fight my way through eight years of graduate school to not really knowing exactly where I fit in.

Honestly, when I first got sick, marriage and children were an open and unanswered question. Would I find someone who would love me despite, or in spite of, my complicated illnesses? I did. However, the jury is still out on the whole having kids thing, so that’s TBD.

At the core, I’m still me, just different. My priorities changed. And that’s how life is, even without illness.

Now, I do have a desire to have a family, so what that’s going to look like is going to be interesting. And that’s where a lot of my focus is right now. The specter of having to go off of medications that I have come to rely on, and what that will mean for my home and work life, is a huge deal. There are so many unanswered questions.

I think a lot of what having a chronic illness does is that it forces you to face unknowns that healthy people don’t necessarily have to think about.

For 12 years, my life was almost entirely consumed by chronic illness. Now it’s consumed by things that are normal for people my age; maintaining a job, exploring what else is out there, dating, engagement, marriage, children.

Obviously, chronic illness colors all of those experiences and makes most of them more difficult. But I’m no longer just a chronically ill person. I was someone’s fiancĂ©e and now I’m that person’s wife. I hope someday to become a mother.

In a way, it’s sad that chronic illness isn’t my complete focus anymore, but it’s also refreshing.


  1. Leslie,

    I always say chronic illness has made me a better, son, husband, father, grandfather and most important human. I know when I was first diagnosed 45 1/2 years ago with diabetes, I thought my life shortened. I was completely wrong. My life did not shorten, my life expanded. I am glad yours is as well !!

    BTW: I love the boarder!!

  2. I'm worried that I'm suffering from RA. I went to hospital on October after experiencing pain in my legs and hands and X-ray was done only to be told by a doctor that it's seems I have athritis. It's hard to believe that I'm only 25 yrs old and the disease started exactly the time I got my first job and second daughter. I have never gone back to hospital but I'm experiencing serious pain appreciating everyday. But after r researching I found this blog and I felt that I'm not young for the illness, the only thing is to be strong and visit the doctor once more, confirm and start the journey if certainly RA is the one eating me up.

  3. I agree! I have been living with chronic illnesses for 45 years. I now know these conditions are my motivators to succeed in life. I work harder because I am always hoping to hide the symptoms and not look different. However, I feel its been a prideful behavior and as a Christian pride is not welcome in my life! I am now Humbled and seeking ways to advocate for myself and others with Invisible Illness! I let go and let others see I am not well...but I am strong and fighting through it. I appreciate your words...thanks for sharing. Your blogging is definitely inspiring me to become an Health Advocate! Maybe we can email about it. Thanks and stay positive! ALWAYS!!!