Coping | Daily Life | IBD
My name is Erin. I am a 48-year-old who has had Crohn’s since 1999. I was 24 years old when I was diagnosed. I am a wife to my high school sweetheart and mom to two adult children (26,20).
It is very easy to look at someone and envy what they appear to have. Most would know or classify me as your typical suburban housewife without any significant issues. Nevertheless, I have been through a lot. I have had 10 major abdominal surgeries and ostomy revisions multiple times. I have lost count of the procedures I have had on my bum from pesky fistulas, which brought me to the operating room at the very least 20+ times. My official diagnoses are Crohn’s Disease (with all the possible side effects lol), Hypothyroidism, Ménière’s disease, Major Depression, anxiety, Panic Disorder, and Psoriasis induced by Humira (so they think) My skin is still a work in progress at the ostomy site, which is huge source of anxiety for me. I have weeping skin, leaving my appliance not too secure. I have had so many embarrassing medical accidents in public that it truly traumatized me and I think triggered my Panic Disorder.
I was simultaneously struggling to raise a family, work as a realtor, be a wife and survive this awful disease when I was diagnosed with major depression and anxiety. It’s been about 10 years since I’ve had that diagnosis. I never stopped to think about my mental health. No one ever checked in with me about my mental health after the surgeries were done and I was left alone to process what had happened to me.
I was empty, a shell of my old self. I didn’t know myself anymore. I was mourning the person I was before the surgeries and the disease. I became tired, I was tired of faking it and making believe I was OK and smiling at everyone. I lost so much; my health, my dignity, my home. I took shelter inside my safe space, which happened to be my bedroom.
But today, with help, I have changed my mindset. I think I still have so much to look forward to and so much I want to see that I can’t give up somehow I had to crawl out of the dark hole! I had no idea how I was going to do this but I knew I had to make a step. I had to make the decision to get help.
I had been with the same psychiatrist since I was diagnosed with depression. I felt all he kept doing was feeding me medication. Yes, it helped with some of the symptoms; it was keeping me alive I guess and numbing my anxiety. It was helping me sleep at night because I have insomnia too. But, overall, I was not doing well. I didn’t want to do anything, nothing excited me. I couldn’t focus on anything, my memory was suffering too. It was a terrible feeling.
I have struggled so hard to find myself again, and honestly I’m still searching for me. I’m doing much better than I was. Things were so dark, during my deep depression I had stopped working because I just couldn’t do it anymore due to all the surgeries and illness. I applied for disability to no avail. I’m on my 3rd time trying, that alone made me feel like I was less than because they didn’t accept that I was disabled. Not being able to contribute monetarily to my family has been a huge weight on my mental health. While I have medical bills adding up with high deductibles on insurance and a husband who works all the time, it was a lot of pressure for me. It still is something I fight with internally. The guilt I feel for being in this position is tremendous.
I made my most important step when I decided to switch doctors eight months ago. I felt there had to be a better way than suffering in silence. I reached out to a family member who is a social worker/therapist for a recommendation. I did not go into a lot of detail nor did he ask for much. I’m grateful to him for the connection. I told my new doctor what I was trying to achieve. I was not expecting a miracle but I want to be able to enjoy and live life a little bit. I do not want to be afraid to leave my house. We have changed some of my medication for the better and took some away (my pill box is overflowing with meds). Overall I’m extremely happy with this change.
I also found a therapist who has listened to me, and guided me. She gave me tools to work with, including daily affirmations, journaling my feelings, making lists, organizing my thoughts. While I doubted such tools at first, they are working. I am grateful I found someone I connect with and who is going to guide me on my path of wellness of my mind.
I’ve learned that my mind controls so much and it needs to be tended to just as much as my Crohn’s Disease. I am a work In progress, but happy I made the positive change to start fighting the fight again! We all know that IBD is an invisible disease that can throw you an unbelievable amount of curveballs. When it seems gray and dark, I know the sun will shine again.
Erin lives in Connecticut with her husband, son and basset hound. She works as a Color Street stylist. Erin enjoys camping with her family and cooking treats in the kitchen.