World IBD Day :: Break the Silence

Today is World IBD Day. It's a worldwide event to unite people in their fight against Crohn's Disease and Ulcerative Colitis, known as inflammatory bowel diseases {IBD}.

It is often marked by a purple ribbon to help bring awareness and support to these diseases. There are certainly physical aspects of IBD to discuss, but I think the psychological impact that an incurable, chronic, autoimmune disease has on an individual is often overlooked. This year's World IBD Day focus is centering its discussions on this psychological impact, in an effort to #breakthesilence.

When I was first diagnosed back in 2012, I had to immediately come to terms with the fact that I would be dealing with this disease for the rest of my life. There is no cure, and the disease can manifest itself in a number of ways over a lifetime. I had to figure out how to get healthy {at least as healthy as I could now be}, and how to live with this disease on a daily basis. It was certainly overwhelming, but I was incredibly blessed to achieve remission on the first medication I was prescribed. I was able to find a "new normal," and I had 7 years of remission {minimal to no symptoms}. I was always aware of my disease, as certain rhythms in my life had to change {diet, exercise, rest, stress, medication, doctor visits, etc}. But it easily slipped into the near background.

I feel like this most recent round of active disease has taken more of emotional and psychological toll. Being back in this place of being sick, back in the place of not knowing if/when I will achieve remission again has been really hard. Finding out that my disease had spread to other parts of my intestines, experiencing new additional symptoms that I didn't have the last time around. Knowing that my body has developed antibodies to one of very few medications for my disease. It just becomes exhausting and discouraging.

There are several contributing factors as well: being a mama to 3 little ones and walking through a global pandemic. So it definitely feels heavier than perhaps it would be otherwise. With Crohn's Disease {especially active disease}, my body needs A LOT of rest. I could easily sleep 10 hours at night, plus take a nap {or two} during the day. Sleep is healing, for sure, but when your body is constantly fighting the disease, it becomes vital for survival. But that's not exactly conducive to having 3 little ones haha. They run me ragged on my best days, so it's difficult to get the rest my body needs, and it's also really difficult to be "on" as the best mama that they need every day. So there's a lot of guilt in these days of intense motherhood and active disease.

I don't even know where to begin in unpacking what the psychological toll of managing my disease during a global pandemic has been. I know it has been difficult for a lot of people; we have all had to make tough decisions, and we are all suffering from decision fatigue. And there are certainly hard decisions from which I have been spared, so I don't want to presume I have somehow had it worse than anyone else. But there are unique things I have had to navigate during COVID, and it has often felt incredibly isolating. 

In this pandemic, I am automatically considered high risk. Specifically because my disease is active {so my body is actively fighting inflammation}, and because of the immunosuppressive medication I take.  Thankfully, the medication is more targeted, so it doesn't suppress my entire immune system. But it still impairs my body's ability to fight off infection. I will get whatever cold or stomach bug {or COVID virus} my kids bring home, and I will suffer more intense symptoms for a longer period of time. It just takes my body longer to fight simple things and recover.

I am so incredibly thankful for vaccines. I was able to get mine, and that has offered a huge amount of relief in a year of unknowns. But there is a likelihood that I won't experience the same level of efficacy as the rest of the population. So while my vaccinated friends get to enjoy a new level of freedom, I'm still stuck being that much more cautious and waiting for more information to come from the studies that are being done on people with IBD and the effectiveness of the COVID vaccine for those who take biologics. We're just not out of the woods yet, and those who suffer with IBD are still stuck having to make hard {often lonely} decisions on masking, social distancing, etc. 

People understand to a certain extent. I have the built-in "excuse" of citing my health for our decisions to socially distance and only interact closely with vaccinated people. But now that the pandemic has drug on, and I am still not in remission, I feel the pressure to make the same decisions that healthy people can make. And I just can't do that quite yet. I can't {and don't} trust my immune system. It's hard enough to be sick on a daily basis with Crohn's symptoms; I just can't take another illness to fight right now. And it feels so overwhelming and defeating when people don't understand that. I know I have to let it go and trust the Lord's timing and guidance in all of it. But it's hard to disappoint people. It's hard to be written off or feel misunderstood.

I certainly struggle with the timing of all of this. It's hard to understand why the Lord has not brought remission after 18 months. It's hard to understand why He would allow this set of circumstances when we're trying to build new relationships and community in Virginia. But I trust Him, and I know that He isn't wasting any of this time. I know He is using it for His glory and my growth. I have been blown away by the grace and understanding of the CBC family, as we all seek to love and serve each other. People have been more than willing to meet outdoors, socially distance, wear masks when necessary, just so I feel comfortable. That's no small thing. I am thankful for technology that has allowed me to meet women in the church, dive into the Word together, and build community. It hasn't been easy, but I am so grateful that our church has made such an effort to make things safe and accessible for everyone.

I am ready to feel better. I'm ready to go back to "normal," both from a Crohn's standpoint, and a pandemic standpoint. I'm ready to not have every conversation and prayer request revolve around my health. I'm ready for Crohn's to go back into the background of my life. That's not guaranteed, but it's something for which I am hoping and praying. Until then, I will rest in His unchanging grace, rejoice on the good days, and look forward to glory when I get a new {restored and unbroken} body :)