Chronic illness and dealing with it "the right way"

I debated how to share what I've been working through these last several weeks so without finesse, I'll share:

I mentioned briefly in my first post that I would be sharing out how I focus on being a creator while dealing with a chronic illness. These last several weeks included several realizations for me about the chronic disease I experience, and the overall health of my body. 

So, what do I have going on? I realize up to this point I've been a bit vague about what health things I've been working through. Let me share in what I hope you will see as a matter-of-fact way and not a self-pitying way. I have ulcerative colitis (UC). Per the Mayo Clinic definition, UC is an inflammatory bowel disease (IBD) that causes long-lasting inflammation and ulcers (sores) in your digestive tract and typically affects the innermost lining of the large intestine (colon). IBD, according to WebMD, is a result of the immune system attacking a harmless virus, bacteria, or food in the gut, causing inflammation that leads to bowel injury.

Basically, not to be gross, my immune system attacks harmless things in my stomach and inflames my colon, causing bleeding, ulcers, and highly unpleasant side effects. I won't go into too much detail on all the things that this entails, but I will share the basics. For me, this has meant stomach discomfort, a need to go often, blood and mucus (don't ask), joint pain/swelling, fatigue, and a low-grade fever. 

Before I go any further, I want to clear up two MAJOR misconceptions that most people have: 

  • First, IBD, UC, and Crohns are NOT Irritable Bowel Syndrome (IBS). The WebMD definition of IBS is a syndrome that causes stomach pain and the poops or constipation or both on a recurring basis, but does not cause signs of damage in the gastrointestinal (GI) system. In IBD, the disease does damage the GI system, and if it stays flared up, can actually increase a person's chances of having colon or stomach cancer.
  • Second, UC is not something that is caused by stress or anxiety. In my experience, times of stress can definitely exacerbate the symptoms, but it does not cause them. There are several biological and environment (meaning exposure to certain viruses, bacteria, etc.) factors that come together to make it UC occur, but stress is not one of them!

The reason I've been struggling recently is because the medical treatment I was doing for UC actually made me feel far worse than I had felt in a long time. The bleeding worsened, the fatigue increased, and the brain fog escalated. I listened to the nagging feeling that something else was going on and went through rounds of doctor appointments. I discovered that I also have Chronic Active Epstein Barr Virus (CAEBV) which causes mono-like symptoms and can complicate UC. 

What does it feel like living with these symptoms? It's like my body is falling to pieces while my mind and heart remain steadfast and insistent that they feel healthy. It's actually a surreal experience. In the past, I experienced several health issues that can now be explained by UC + CAEBV and I always felt mental health symptoms with it like depression and anxiety. This time, I feel shock in my mind and heart that I'm so sick according to the doctors. When my doctor told me she didn't understand how I wasn't flat on the floor with my numbers, I actually laughed out loud. Actually, I feel slightly amused and baffled, and mostly badass.

I feel like my body is not integrated with my mind and heart. I feel the best I've ever felt in terms of my mental and emotional health, but my body is taking a nosedive off the mountain that my heart and mind already conquered.  

The gift in all this? Yes I did say gift. The priceless gift in all this is that I'm learning to slow down and respect my body. I tend to declare my intentions to myself, and go balls to the walls to manifest those intentions. Oftentimes this means I force my body to follow my will. And with all of these health related issues, I can't bend my body to my will. I can't heal it by "pushing through" and now I'm learning what it means to just be.

While I feel proud of my resilience, I also realize that I've been pushing through when my body repeatedly asked for a break. Finally now I'm forced to give it a break and am thanking God for my supportive company and boss who are enabling me to take a three month medical leave. 

The biggest challenge in all this, however, is how many people have an opinion on how to deal with these health issues "the right way". Too many people to count have had their own idea on how I should attain optimal health. The top things people have told me are: 

  • Eat clean (popular opinions recommend allergen free, sugar free, vegan, Paleo, dairy-free, and gluten-free diets)
  • Avoid stress 
  • Practice mindfulness 
  • Exercise regularly 
  • Sleep enough
  • Take supplements
  • Don't take supplements
  • Take medication
  • Don't take medication
  • Practice self care
  • Eliminate toxins from your diet, personal care products, and environment
  • Pray about it

The common theme? Every one of these are things I am responsible for doing. And the hidden implication is that if I'm not doing enough or all of these things, OR if I'm not doing them "right", then I'm going to continue to be sick. It puts the onus on me for being sick. It makes it my fault that I am not getting better. 

To be fair, I recognize most people offer these suggestions with good intentions. They want me to feel better and be well. And their comments are coming from a place of love.

The frustrating part? I have done these things. All of them. All in different combinations for over two years. And I'm still experiencing illness. 

My own next steps are clear. I am focusing on integrating the healthfulness of my mind and heart with the need for extra care for my body to help it heal. I am continuing to try new things and I feel determined in my course of action. I know that I am creating regardless of how healthy my body may feel. I recognize that my experience with my health would be far worse if I hadn't done several of the things on the list above. I am proud of my perseverance and resilience, and understanding of the moments I feel like I want to scream out my frustration.

Before I sign off, I have a special request. When you encounter someone facing health challenges, no matter how much you want to help, think twice before you give advice. Are your words wanted, necessary, and actually helpful? Or will your words send the message that the person isn't doing enough for themselves and their own health?

With gratitude and a creator's heart,

Kate