Down the Rabbit Hole: Crohn’s Disease and My Mental Health
Over the last few months, I’ve noticed a decline in my mental health. I get angry more quickly, I cry at inappropriate times several times a day, and I increasingly have periods where I feel so profoundly sad that it’s hard to breathe.
These symptoms are not new to me, but the frequency and intensity are. I had a similar experience after each of my surgeries and the birth of my son, but those periods were mercifully short and mostly rose-tinted now. At the time, I saw an end in sight because my condition—a period of recovery—was temporary. I convinced myself that I would heal, that the surgeries would make me better, that my baby blues would pass as I adjusted to motherhood. In each case, I persuaded myself I could get through it, that it would pass, and sure enough, it did.
During those periods, I always felt that I still had a degree of control over my mental health. I tied my mental health solely in with my physical health: I knew I was going to feel better mentally because I was going to improve physically. The pain? Temporary. The fatigue? Passing. Each new treatment was going to bring me closer to “normality” which for me, would be days free of pain, days where I jumped out of bed and spent the entire day doing…things. Anything. Playing with my son, shopping, maybe joining a roller derby team … normal stuff. For me, that was the future I clung to, and the hope of it gave me the optimism-fuel to get through. Tomorrow was always going to be better.
Two months ago, however, I had to face reality: I’m not going to get any better. I’ve survived ulcerative colitis, an ostomy, a j-pouch, and many of the complications that go along with those. Then, early last year, I was diagnosed with Crohn’s Disease, and it’s been an uphill battle to find a state of remission ever since (my immune system is even saltier than I am). Although my Crohn’s is currently in remission thanks to Stelara®, the cumulative satellite effects of the disease, the side effects of the medications, and the resultant scar tissue and painful adhesions from my surgeries is permanent. Barring a cure, my present is also my best-case-scenario future. I avoided this reality for months until my doctor and I had a very frank discussion. The result of that discussion was this:
I will not get any better.
Now, my quality of life is good. Very good. I have a loving and supportive family, a career I love that I can do at home around my illness, and I’ve adjusted to the physical limitations of my condition well. Only two things have changed: my medication (the Stelara®) and that little bit of hope, that mantra I was able to repeat to myself. Tomorrow will be better. Now I know it won’t be.
I don’t honestly know which of these changes is the cause. Perhaps it’s both. Depression is a known side-effect of Stelara®, but I can’t stop taking it; it was my “last chance” treatment option (although this is changing as new drugs enter the market) and so far, the only one that’s worked or that I haven’t developed antibodies to. So let’s assume that my medication is part of the problem. But I also think it’s more than that.
At first, I didn’t feel that upset. I’d known, deep down, that I was probably as well as I was ever going to get. I had my obligatory cry in the car on the way home then got on with it. But slowly, insidiously, that reality snuck up on me and spread like poison, taking me completely unaware until a few weeks ago, when I finally admitted to myself that I was not okay.
It’s hard. I pride myself on moving forward, on finding a silver lining to everything. I’m one of those annoying “it could always be worse,” “good disabled” people. Because of this, it was even harder admitting it to others. Wrongly, I felt like I was letting them down.
I was also worried how they would treat me. Not getting treated like a child when I have one myself has sometimes been an issue in my recovery. And mental health is different, even though the brain is another organ, albeit more complex than my be-damned digestive system. Affected mental health has a stigma attached to it, a fear of contagion. Its invisibility is frightening to people, whereas the invisibility of my Crohn’s is, for the most part, benign.
I announced it one night, with tears, in the middle of normal conversation. My mother had been reading how people with chronic illnesses such as mine had a higher risk for depression, so the concept was still fresh in everyone’s minds. I won’t say that the immediate reaction was overwhelming support, because it wasn’t. It was a bit of shock, a bit of awkwardness, and a few questions to determine how serious I/it was.
Of course, the immediate worry is often suicidal thoughts. That’s not where I am. Like others have said, it’s not that I want to die, not at all. But sometimes, I want it to stop, just for a few hours. I’ve not had a pain-free day since 2009. Eight years of pain, fatigue, and worry. And I’m just getting started. Other people have had decades of this shit. It’s a miracle that anyone who lives with chronic illness doesn’t experience a serious decline in their mental health. Luckily, it’s an issue, along with PTSD, that is becoming more readily and openly discussed.
I’m pretty fortunate. Once it was out there, my family took it in their stride. In fact, they’re now all nodding sagely to one another and saying they’re surprised it hadn’t happened sooner. That doesn’t mean they understand it, not fully. There is still some general uncertainty on how to normalize it within our family, and I know sometimes the way I feel or respond is hurtful or inconvenient, but on the whole, they’re on board and open to help with anything I need.
What am I going to do about it? First, I’m going to stop tip-toeing around it, and I’m going to stop apologizing for how I feel. This is not a failure, nor it is anyone’s fault. It’s something that is happening to me, and by extension, to those around me. It sucks, but we’re family (and friends), and we’re sharing this lifeboat; it’s what we do. Don’t want to deal with it? Fine. That’s about who you are, not about what this is.
I’m also going to be as proactive as I can. I know I’ll need help coping with this, and I’m fine with that. I’m going to start with my doctor and see where I need to go from there; I’m not ruling anything out. I’m also going to try to change the way I think, to take this new experience and adapt to it, rather than just fight it. I love lists, and so I’m going to make some. What helps. What doesn’t. I’m going to look for patterns.
I’m going to try to not be afraid. I’m going to embrace this part of myself and be proud of it like I’ve done with every other part of my condition. And I’m still going to move forward. I know it won’t be easy; I know it will be a struggle. But I also know I can do this.
I will get better.