By Michelle Pickens, as told to Danny Bonvissuto

For as long as I can remember, I have had problems with my health. When I was little, I had severe constipation, nausea, vomiting, and food sensitivities.

As I got older, those symptoms turned into diarrhea, irregular bowel movements, and pain. I was always very fatigued and my immune system was weak: the second someone in my class had a cold or flu, I would get the flu too. Looking back, it was a sign.

From a mental perspective, my anxiety was high. What if I need to find a bathroom? What happens if I have nausea? The doctors would say, “Oh, he’ll get over it.” “It’s just your anxiety.”

Finally, a diagnosis

After years of misdiagnoses, I was finally diagnosed with Crohn’s disease in 2015. I was 23 years old and had just finished college while working full-time. My symptoms were getting worse. I had a lot of vomiting and pain. The tiredness got to the point that some days it was difficult for me to work or even get out of bed.

It was so bad that it pushed me to seek additional care. I took a couple of months off, looked for another job, and attended all the medical appointments necessary to get the diagnosis.

There is no blood test for Crohn’s disease. There is no way to show what you feel. I finally saw the right doctor, who tested me with a pill-like chamber called a small intestine capsule. (This is a pill-sized camera that you swallow, allowing doctors to see inside your digestive system.) He traced my intestines and was able to reach a blind spot where neither a colonoscopy nor an endoscopy can detect inflammation.

It was a huge relief to get the diagnosis because it made me feel like I wasn’t crazy. For many years I knew something was wrong and I couldn’t name it. I also felt hopeful. Once I knew what I was facing, I knew I could work my way to a better place.

sharing my story

In 2016, I started a blog called Crohnically Blonde as a means to connect with people as I go through the stages of dealing with Crohn’s disease. When I first started sharing, there weren’t that many people talking about it.

I have been able to build relationships in an online community through shared experiences. I hope someone can look at my story and feel that if they are at the beginning of their journey, there is a way to get through it.

Managing my medication

At first, I was on a lot of medications that didn’t work well and were a huge tax on my schedule. I now receive infusions of an immunosuppressive drug every 7 weeks.

It means being away from my family and work for 4 or 5 hours, and arranging childcare coverage during treatment and the weekend after, because I feel almost like I have the flu. The extra help allows me to rest and regain energy after treatment.

I have the option of taking more medications to control my symptoms. But I try to avoid them and manage on my own because I don’t want to have to take medication for everything.

Before having my son, I was more willing to try different medications. But while I was pregnant, I could barely take any of the medications for Crohn’s disease. After I had it, there was no point in depending on them.

Crohn’s disease, pregnancy and motherhood

Crohn’s disease affected me throughout my pregnancy. I became very sick in my third trimester because I stopped taking my immunosuppressant medication to avoid passing it on to the baby. In the end they had to induce me early so I could get back on the medication as soon as possible.

My son, Maddox, is now 1 year old. Crohn’s disease changed my expectations of what I thought motherhood would be like.

I’ve learned that I’d rather be present and able to enjoy it in the good times than force it when I’m sick. It has been difficult. But if I’m not well, I can’t be there for my son. I try to be with him as much as I can, but there are times when I need to step back and take an hour nap.

I have a great support system: my husband, my mom, or my mother-in-law can step in and help for a while, and when I feel better, I can be a better mom. There are also days when I don’t have help accessible. In those situations, I will do simple activities that I can enjoy with him but that are not physically demanding on me.

Program and adjust

I’m in a pretty good situation right now. I now work from home as a recruiter for a technology company and that makes a big difference. A lot of my anxiety in the past was from being in an office and being sick. Now that I can work remotely, it’s a big change.

But Crohn’s disease still affects my daily life. I have days when I feel bad and need to rest and change my plans to be at home and not somewhere.

No matter how planned I have my day or my week, if I’m not feeling well, that takes priority. I like to be a very programmed person. But I have to roll with the punches and have a plan B.

The biggest challenge is managing my sleep and stress. Both are very influential in symptom flare-ups. I have to sleep at least 8 hours, no matter what. And I try to build in time to de-stress, like reading a book or relaxing at the end of the day.

Going to therapy also helps offset stress and is now part of my ingrained self-care program.

Social life strategies

My coworkers, family and friends are very understanding. But that wasn’t the case at first. The more open I’ve been about Crohn’s disease, the more people understand that I don’t fall apart if I have to change plans; there is an underlying reason.

I only have a certain amount of energy, so now I pick and choose. I know I need to work and be with my family, which means I have less energy to devote to social situations.

I plan what I feel comfortable doing, but I also feel comfortable changing plans. Even if I’m excited to go out to dinner with a friend, I don’t put pressure on myself if I feel terrible that day.

Foods in constant change

I have been following a gluten-free diet for years. I started an elimination diet and realized that gluten was bothering me.

Other foods are not so black and white. I can eat a salad one day and it’s fine, and eat the same salad the next day and it makes me sick. I repeat safe foods that don’t make me sick and follow a general schedule of three meals a day that are virtually gluten-free.

Sometimes timing matters: I wake up feeling nauseous and need a starchy food like dry cereal. If I’m going on a road trip or have a big event, like a wedding, I plan for it and try to be careful about what I eat beforehand because I don’t want to get sick. But it’s hard because you never really know. It’s a kind of bet.

Flexibility is key

I have learned to be as flexible as possible. I never know what each day will bring, I just have to trust that my body is telling me what it needs for that specific day. That is my priority and everything else can wait.