Chronically Vigilant

Recently, I was asked how living with an invisible illness affects my daily life.

I have to be completely honest, upfront before I say anything else. My response to this question during the years of 2009-2017 would be VASTLY different than what I’m about to share below.

I started the biologic Remicade in March 2017. It did take my body a while to adjust to the medication and to figure out the right dosing schedule and what medications I needed to take alongside my infusions. During the trial and error, I experienced several good months in a row last year, followed by a few obstacles and this cycle repeated for a short while. Finally, I reached what must be the right combination for my body at this time, and for the last six months, my Crohn’s disease has been mostly medically managed.

Now, there will literally never be enough words for me to express my deepest and sincere gratitude for this period of reprieve. Or my hopes that it will continue for the foreseeable future. Or what I’m willing to do/sacrifice to maintain this status. But please know that I try to send those feelings back into the universe at every chance I get.

Symptoms don't plague every day of my life

What this means is that today, I am unbelievably lucky that symptoms of IBD don’t necessarily plague every single day of my life. What this means is that today, I am able to work full time, to walk my puppy and see my friends, to do some traveling, to pursue my passions, and to go through infertility treatments in hopes of conceiving and carrying my first child.

What this does not mean is that I don’t still have Crohn’s disease, or that I’m no longer chronically ill. What this does not mean is that I am able to forget that I live the sick life, even when nobody else sees or hears or remembers.

There are different phases of chronic illness

I’ve learned over the last many years that there are different phases or chapters of chronic illness, IBD specifically. For me, there was the chapter before diagnosis, where I had all the symptoms but not any of the applicable treatments. Then, there was the oral drug's phase. The phase where there were so many pills, but I kept ending up in the hospital anyway. There was the starting Remicade chapter, the adjusting to Remicade chapter, and then the first chapter of symptom reduction. That was one of my favorites. There was the chapter where the dosing schedule was changed three times successfully, and then the one where I got a small bowel obstruction. Now, we’re in the chapter I’d like to call “Chronically Vigilant.”

Chronically vigilant

Today I find myself constantly vigilant about my health, always thinking about the balance between living and being careful. Even when I am not experiencing regular symptoms, my disease is always threatened by stress. So, managing that aspect is incredibly important to me. It has taken me a long time to find the right balance. Today I have found that combining regular counseling appointments with meditation and using crystals and essential oils has allowed me to naturally keep as calm and even-keeled as I am able.

I'm reminded of my disease every day

One message I would like to share to explain the truth about living with an invisible illness is just that. It’s an invisible illness. This can absolutely be a curse, but this year for me has been the best gift. It may be literally 100% invisible to my friends or family that I have Crohn's disease on certain days, and this makes me both thrilled and incredibly grateful. This means that the people in my life are truly seeing me for me and that I’m lucky enough to maintain medical management. But, this doesn’t negate from the fact that just because they cannot see any remnants of IBD from the outside, I am still reminded of my disease every single day.

I am reminded by the pills I take in the morning and at night. I am reminded by the port that is surgically implanted under my collarbone, and the saline infusions and Remicade treatments I sit for every few weeks. I am reminded by the constant calculation of how much energy I’ve used for the day, and how much I have left. Or also by the way it takes me so much longer to recover from a late night, early morning, or full day than it should.

Grateful and hopeful

Every single day, I am grateful for these reminders, because they are just that. They remind me how bad things have been, and by comparison, how good things currently are. They remind me that I am strong, even when I don’t feel that way. They remind me that being hopeful sometimes does pay off, and when it does it can be so so beautiful.

If you don’t experience symptoms every day, how does IBD impact your daily life? Do you also find yourself vigilant?