For me, mental health with a stoma is being psychologically and emotionally “well enough” to cope with day to day life, and not letting its ill effects turn into a downward spiral. My view of physical health is being free from illness or injury, which many have benefited from since getting ostomy surgery. Looking after your physical health can lead to good mental health and vice versa. But what do you do when physical health issues are beyond your control? Being diagnosed with Crohn’s disease at 7-years-old, it’s always been a struggle looking after my physical health, which in turn has impacted my mental health.
“Mental health is about wellness rather than illness.” – Beyond Blue
I don’t remember a whole lot when I was first diagnosed, apart from my doctors giving the pain a name. In that way, it gave my parents comfort knowing what was causing me to be so ill, and comfort there would be some way to help me get better. For nearly 10 years, I was treated with quite a few different medications and endured many horrible procedures. I couldn’t attend school regularly and was often too sick to play with friends. Eating food was never enjoyable. Some of those unpleasant experiences are embedded in my mind and always will be. I feel like I missed out on so much and know that I'll never get my childhood back.
Finding out that I needed a permanent ileostomy didn’t come as a surprise to me. My doctors were reluctant to rush into surgery because they were worried it would be too much mentally to cope with at age 19. But I was ready for it. The prospect of living in constant pain even one more day pushed me forward. I made up my mind to have the operation as soon as possible with the hope of getting my life back. After the surgery in 2011, my mental health has been on an up and down roller coaster ride. Being a young woman surrounded by so many social and self-image pressures is hard enough, but I feel even more overwhelmed having physical complications from illness and an ostomy bag. Because I struggle mentally with “Stacey Stoma” I decided to see a counselor who has helped me (immensely) with anxiety and dealing with triggers like being around hospitals. I struggle with fear of abandonment from having spent A LOT of time alone in the hospital as a child. Sometimes I get flashbacks of seeing myself in pain, rocking back and forth to stop losing control of my bowels. I get depressed thinking about how my family couldn’t be around more to support me (through no fault of their own). Counseling helped me learn coping strategies to move beyond the struggles and dark thoughts.
I find it so infuriating when I hear people say that if you “stay positive” about a rubbish situation then it will hurt less. I agree to some extent that if you’re positive then things may have less power over you, but what is actually wrong with feeling negative once in a while? I am human and I have emotions. I will feel how I want to feel without any guilt that I’m doing something wrong when I don’t see the bright side. Sometimes, I just can’t see the bright side, even if it’s right in front of me. Sometimes, I just want to be mad at the world and take a day off where I can sulk and hide. And that’s perfectly okay. On those days, even though it’s super tough to do, I try to practice self-care and rest. Personally, I find that being positive but realistic helps me remember that tough times don’t last and things will get better.
The struggles I've been through don’t define me, but they have in some ways shaped me into the person I am today. If I had advice for my 11-year-old self, I’d tell her this: There will be victories and challenges along the way. She will gain and lose friends. She will question herself constantly but trust her instincts. It will take a while to get used to living with an ostomy, and it will not be easy. Change is good, and that’s what life is.