We could all use a little help processing the life changing reality of a serious diagnosis.
When I think back to the day I received a diagnosis of Crohn’s disease, there are a few memories that stick out in my mind.
The doctor handing me medication without really explaining what it was.
Googling Crohn’s disease in my sedated, half-awake state, because I really knew nothing about the disease.
Mostly, I remember the feeling of relief. The doctors had found what was wrong with me and now I was going to fix it.
I am sure my doctor didn’t deliberately make me think that my inflammatory bowel disease (IBD) was a short-term problem, but no time was spent explaining what my life would be like with the condition.
Because of this, I spent much of the year after my diagnosis in denial that my disease was a chronic, long-term problem. I felt I could “fix it” if I just did enough research.
I felt as if I just needed to get better and life would be back to normal.
I know now that I was going through a kind of grief. I wasn’t mourning the loss of a loved one or the end of a relationship, but the grief was still real.
I was being forced to say goodbye to the way my life used to be and my perceptions of a “healthy” body. Like with any grief, denial is only stage one.
After I realized that my illness wasn’t going anywhere, I became angry (stage two!). I noticed myself constantly asking, “why me?’”
I was angry at friends who complained about needing to lose weight or those who could eat and drink whatever they wanted. I was angry at my body for feeling faulty and broken. And I was angry at the doctors who misdiagnosed me in the years leading up to my IBD diagnosis.
It took years of living with Crohn’s disease until I felt I finally arrived at the final stage: acceptance. While some people might reach this place quicker, it was only through therapy that I could finally accept life with my illness and stop fighting it.
It’s been 7 years since my diagnosis, and for the last 3 of those, I’ve been seeing a therapist regularly. It’s been invaluable for me, and I believe that everyone with IBD should be offered counseling as part of their treatment plan.
I think therapy is useful however long you’ve had IBD, but it’s particularly vital in the early stages of a diagnosis.
The adjustment to a completely new life can be overwhelming — whether that’s talking to your employer, navigating socialization, or learning to love your body again.
Acknowledging this and referring patients for support should be built into post-diagnosis appointments.
While not all patients might feel they want or need counseling initially, knowing the option is there can still be reassuring.
Our doctors might prescribe a vitamin D supplement if we’re more at risk of nutritional deficiencies or refer us to a dietician to support our nutrition, so why not be more aware that IBD patients are at risk of mental health issues and treat this too?
Not only should treatment be offered, but mental health should be part of the conversation.
Every time I visit my doctor, I am asked about pain, fatigue, and bowel movements, but I’ve never been asked about my mood or anxiety.
Although therapy was really useful for me, it’s important to note that some people might find it difficult to open up and talk to a professional.
However, therapy doesn’t have to involve talking about your diagnosis at length, it can also teach patients coping strategies that they can apply when dealing with flare-ups or stress.
I learned cognitive behavioral therapy strategies that I still use today.
Finding a support network can be really difficult with IBD.
It’s assumed we may talk about our condition with friends and family, but it can sometimes be hard to open up to them. Unfortunately, in my experience, not everybody is empathetic.
Therapy gives us someone to talk to who won’t dismiss us and will take us seriously.
Find a community that cares
There’s no reason to go through an IBD diagnosis or long-term journey alone. With the free IBD Healthline app, you can join a group and participate in live discussions, get matched with community members for a chance to make new friends, and stay up to date on the latest IBD news and research.
The app is available on the App Store and Google Play. Download here.
Although I think therapy after a diagnosis is really important, IBD really is a roller coaster.
People might develop new symptoms, take different medications, or opt for surgical interventions. All of these can impact our mental health.
In my case, a fistula surgery a few years after being diagnosed with IBD affected my self-esteem and caused anxiety.
The fact that IBD can change rapidly also means we feel a lack of control, which can be really hard to accept. Therapy can provide us with strategies for feeling more in control of our condition or help us accept that we simply cannot control our bodies sometimes.
It’s clear that IBD is closely tied to our mental health and that therapy is one way to help people come to terms with their condition.
If you’re concerned about your mental health, don’t be afraid to reach out to your medical team and ask if they can refer you for some support. There are also mental health professionals that specialize in health psychology, behavioral medicine, or working with people with IBD.
The following resources can help you get started:
The simple process of talking to somebody about how you’re feeling can help so much.
Jenna Farmer is a U.K.-based freelance journalist who specializes in writing about her journey with Crohn’s disease. She’s passionate about raising awareness of living a full life with IBD. Visit her blog, A Balanced Belly, or find her on Instagram.