Learning to Trust Yourself in the Face of Chronic Illness

Learning to Trust Yourself in the Face of Chronic Illness

Guest post by Sarah Poitras

I have a lung disease called lymphangioleiomyomatosis (LAM). Words I’ve used to describe it are: chronic, progressive, rare (oh so rare), incurable, and fatal. I was diagnosed when I was 30 years old and now I’m 37, so I’ve been living with it for 7 years. And over that time, I’ve thankfully been what my doctor considers stable.

Last year, my husband and I decided to take a big leap and quit our jobs and travel. We love seeing new places and eating new things, taking pictures and spending a whole lot of time with each other and didn’t want to wait any longer to do it full-time.

So we spent 13 months living out of suitcases and it was truly the best.

Of course, I have to travel a bit differently than other people. We moved a little slower and needed some rest days, but throughout the year we both marveled at how good I felt.

One of my symptoms is chest pain and it can come on at any moment, usually without a good cause. And I definitely experienced a lot less of that.

Another is fatigue. When I was home, working full-time, most Fridays I would crash and sometimes that exhaustion would last the whole weekend. This only happened twice this year, and it was after days I knew I overexerted myself.

The lack of stress, increase in daily activity, and ability to take a rest whenever I needed one was a good lifestyle for me and we both noticed it.

My doctor checks how my disease is doing through a series of tests a few times a year. Last year, we came home from our travels to get my check-up. And I was stable, which is the best I can hope for.

My doctors commented on how good I looked and were pleased with the level of activity I had maintained throughout the first 6 months of our trip.

When I came home recently, I expected the same, because I felt the same. But the results were different. My numbers had decreased. The decrease was slight, but it was a decrease all the same and I was devastated.

I didn’t want to do anything or talk to anyone, except my always understanding husband. He kept repeating what my doctor had said during the appointment, which was not to worry because my numbers have always moved around.

Since I was feeling great and looking great, she’s sure I’ll rebound with an adjustment to my medication dosage. But I was stuck on the decline. Even though I still feel good, and even though my symptoms have still been less frequent, I couldn’t get those numbers out of my head.

Typically this problem happens in the opposite situation. People may not be diagnosed with a condition because a doctor isn’t really listening to them or doing the right tests.

I faced this when I was trying to figure out what was wrong with me 8 years ago. I knew something was wrong with me, and I knew it was getting worse. But, the doctors I saw didn’t do all the right tests. They thought it was the more obvious problem (asthma), so I wasn’t treated properly for almost 1 1/2 years.

And I consider myself lucky. I know women with LAM who went undiagnosed for decades. In these situations, trusting your instincts and your body is crucial. It can save your life.

This new situation is like the opposite side of the coin. I was feeling great, but the test results said I’m not doing as well. I was finding it hard to trust myself because of those numbers. So I wallowed. And watched TV. And blogged. And I exercised. And I tried to eat a little better than I had been. And I thought about things more.

I talked to my doctor who told me again that she’s pretty sure I’ll rebound but even if I don’t, I shouldn’t let LAM get in the way of living my life.

I let my husband remind me every day how my symptoms have decreased and that I’ve been feeling good. And I thought about how I just visited 27 countries in 13 months  and biked and walked and hiked many miles. And pretty soon, I was feeling more than ok – I was feeling pretty great and trusting in myself again.

Related: 

• 3 Steps to Choosing the Right Doctor
• 4 Good Reasons to Change Doctors
• Women often “miss” treated by doctors
• Talking with your doctor about pain
• How living in an RV with a chronic illness is simplifying my life

BIO – Sarah Poitras

Sarah Poitras has a rare lung disease called lymphangioleiomyomatosis (LAM)  and loves traveling with her husband, Justin. They recently completed a trip around (some of) the world where they ate absurdly well, saw glaciers and fjords and puffins and elephants, and raised LAM awareness.

They have been documenting their journey and sharing travel tips for others with chronic illnesses at their blog Travel Breathe Repeat . You can also see more of Sarah’s photography on Instagram (spoitras9).