Chronic health conditions don’t have to stop us from living our lives

I’m currently navigating a plethora of health challenges, including Gaucher disease and a recent diagnosis of antiphospholipid antibody syndrome, all while raising an almost-2-year-old. So you might think my family and I were crazy for recently traveling across the world to the United States. And, honestly, maybe we were. But it was worth it.

One thing I’ve learned is that, as long as it’s safe to do so, I don’t want my health conditions to stop me from living my life. So we packed our bags and headed out on a two-week trip to visit family.

There was one additional complication, though. Because the flight would be more than six hours, I was told that I’d be at a higher risk for developing blood clots and would need to take a blood-thinning injection before the flight.

There will always be challenges

I used to be very afraid of needles. After starting enzyme replacement therapy through an IV to treat my Gaucher disease, I’ve become much more comfortable with all the pokes that come with managing a chronic condition. I’m perfectly fine with having an IV put into my body and taking it out afterward. But giving myself an injection was a completely different story.

There was something about actually seeing the needle that I just couldn’t get past. Even after I was shown how simple the injection was to administer, I still couldn’t bring myself to do it.

Thankfully, before boarding the flight, my husband, toddler, and I went into a family bathroom so my husband could give me the injection. He was amazing and administered it so seamlessly.

It also made me think about how much credit the spouses of people with chronic illnesses deserve. They often have to step into roles they never expected to take on. Sometimes they become the person who remembers medications, asks questions at appointments, or in my case, temporarily takes on the role of nurse.

A friend of mine, who also lives with a chronic condition and has needed to take similar injections before flights, told me that her husband can’t even look at the needle. It made me especially grateful that my husband was willing to step in and help me. Because of him, this extra medical hurdle didn’t keep us from taking our trip.

I think that’s what living with a chronic condition has taught me: I don’t want to let it stop me.

A lot of family members were surprised that I still decided to take this trip, knowing that I would have to deal with injections and the additional risks that come with traveling. But Gaucher disease has taught me that my health conditions don’t have to control my life.

There will always be challenges. There will always be things I have to do differently or precautions I have to take. Sometimes I’ll need help. Sometimes I’ll have to push through a fear I didn’t expect to have.

But I’ve learned that being strong doesn’t mean that these things don’t scare me. It means that I can be scared, ask for help when I need it, and still get on the plane.

---

Note: Gaucher Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Gaucher Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Gaucher disease.