What I Can and Can't See When It Comes to Life With My Illness

It’s unnerving being on the other side of a chronic illness. I went from being an open heart cardiovascular intensive care unit (CVICU) RN, Ironman, and new mom to being diagnosed with common variable immune deficiency (CVID), hypocomplementemia, and specific antibody disorder. I’m genetically missing parts of my immune system, and there is no end in sight. I am humbled and grateful for this disease because I have learned to see the beauty in everyday things, even more so than before. That is a gift. But it really makes me think…what else do I see now? How do I perceive my life and illness? So I made a list of all the things I can and can’t see. I’m hoping some of you can relate and know you aren’t alone.

1. I can see what I’m attached to. In Buddhism they say “the root of suffering is attachment” and I agree. How much of this disease do I choose to cling to and make me miserable? I truly miss my former life and still hang onto it to this day. Despite frequent hand washing, immunoglobulin therapy, antibiotics and trying to shield myself from sick people, the infections still come. The life I built being an RN, becoming a mom and racing triathlon is gone. However all the memories are still etched in my mind. Because my former life mattered and I appreciated it. I hold on so tight to that. Despite doing everything “right” I still ended up with this…I see the memories help me through the bad days, yet its still difficult to watch your old life fight with your new one. I cant let go of the hope that some days I catch a glimpse of my old self and know I’m still in there somewhere.

2. I can’t see why empathy is so rare. Kindness and understanding for an unknown and invisible illness is lacking at times. In this day of modern medicine it’s odd to think there is no remission or cure. Well-meaning perceptions of what “sick” should look like doesn’t fit this disease at all. There is plenty of advice like

“Suck it up.”

“Try this protein shake.”

“Well…you look OK.”

“Be more positive.”

“Have you tried  ___?”

I’ve tried those things and still I get sick. Some only understand according to their perception. I’m sad I get punished with misunderstanding and denial because I don’t fit into what society thinks “sick” is. A genuine, “How are you?”, a phone call or text so you know you aren’t forgotten and that someone cares goes a long way. Be kind. To have another human verbalize your illness is real makes me feel blessed and genuinely grateful I still have friends and family who stay in my life regardless of the challenges I face trying to rebuild the new me. Kindness and an effort to understand go a long way and helps me live each day with intention and move forward despite CVID. Friendship, despite these changes, is priceless. Better than any medicine.

3. I can see I hide a lot. I get up every day, shower, do my hair, put on make up and try to be somewhat functional. The exhaustion is debilitating at times. I look in my locked kitchen medicine cupboard and its crowded with all my immunoglobulin medicine and infusion supplies. A shelf for every day meds, one for medication as needed, and stuff I hoard for emergencies. I look totally normal on the outside, but inside I’m a hot mess. I don’t look like I feel. I realize all the confidence, stubbornness, and compliance doesn’t make this disease go away. Even if I do everything right it’s still there waiting to get me. That’s why I still take care of myself everyday regardless of how I feel. I’m hiding my illness because I want to keep my “me-ness” despite my health issues and changes. I cant let it control who I am and shadow my identity. But it does and its always going to be a part of who I am. Just not all of who I am. In a grey area of medicine, the disease is undefined and amazingly real…but so am I.

4. I can’t see why I feel so guilty. But I do. I feel so guilty asking again for help. The burden of being chronically ill is heavy. I’m draining the ones I love with an out of control medical condition, and once more they have to pick up the slack. It’s humbling, embarrassing, and exhausting. I know they love me. I know it’s not my fault. My immunoglobulin doesn’t work, my B cells eat parts of my complement cascade, and I don’t respond to vaccines…definitely not my fault. But I miss my independence, and detest how much the disease humbles me every day. I don’t want to bother anyone I just want to do it my self (what ever it is). And sometimes I just can’t do what I’ve done before. My body wont let me. There are still traces of my old life that bargains and struggles with my new one. Because my former life mattered. I still love it and hang on to what is left. I need to remember the disease doesn’t reflect my character, but in my eyes it’s a guilty inconvenience to the ones I love.

5. I can see I’m still consciously grateful. The body that is destroying me is still hanging on for dear life. I am truly grateful for all the trouble it gives me because it forces me to live my life to the fullest. Every day is a new life. I love the “in between times” because I’m totally focused on what I want to accomplish when I feel decent. Living with intention has made my life meaningful. I can clearly see kindness. Empathy. Understanding. Love. Forgiveness. I can reframe how I look at medication and know its side effects are just collateral damage in trying to maintain some form of normalcy. I enjoy every day even if its awful because I am alive despite the storms and illness. It helps me tolerate them. I know I will meet new demons in the future but I’m ready. Illness cannot take my attitude or fighting spirit. I can see that. And I can see you fighting every day, just like me.

Photo by Christopher Burns on Unsplash