How IBD Affects What You Think Your Future Will Look Like
May 17, 2016
As I’m sitting here starting to write this post, I’m having a hard time figuring out where to start. I’m also wondering if I should even talk about this. I’ve been debating blogging about this for a few weeks, but I kept stalling. I think it was mainly a result of not wanting to ruffle feathers, so I’ll start with this disclaimer:
I know that starting a family and having kids is an extremely personal subject for many people. I have seen and heard stories from friends of mine struggling with miscarriages, infertility, and other difficulties. My goal here is to acknowledge other women who have shared similar thoughts to what I’ve been experiencing with autoimmune disease, without taking away from other wonderful, strong women who have had painful, sad experiences. I haven’t shied away from talking about tough shit before, but this is one tough subject. God, give me grace. Here we go:
May serves as the awareness month for a number of higher-profile autoimmune diseases. Lupus, for example. It’s also the awareness month for IBD (irritable bowel disease). I have UC (ulcerative colitis), which is in the IBD family. I’ve seen some wonderful stories over the last few weeks of people who have been able to fight back against their illness and live full lives, facing the battle of health every day and triumphing. One of the biggest battles that those of us with autoimmune disease face, though, is the battle against what we don’t know will happen. The future. The unknown. Many of us with these illnesses are riddled with anxiety. There are so many factors that we can’t predict with our disease: what medicines will work, what treatment plan will lead us to long-term remission, if we will respond to a diet, if we’ll need surgery, or when our next flare will be. As I’ve gotten older, one of the biggest uncertainties in my life because of UC is if I’ll be able to sustain a healthy pregnancy and have a family.
I remember my first doctor’s appointment after I left the hospital so vividly. That was the appointment where I got my official diagnosis. This is how the conversation went:
Doc: “I looked at your biopsy results and you’re presenting like Ulcerative Colitis. Are you planning on having kids any time soon?”
Me: “No, not really…”
Doc: “Good. Don’t.”
I was 23. This was quite possibly the last thing on my mind. All I wanted to do was get better. But his words haunted me, and at my next appointment I asked for clarification. He told me that it can be really difficult for women with IBD to sustain healthy pregnancies, especially while flaring, but that’s not always the case. Again, I was furious. SO MUCH is unknown about these illnesses. So much. I had been thrown so much to process in the span of two weeks, and my doctor couldn’t even tell me if I’d be healthy enough to have a baby someday. I put it aside for a while, my focus needed to be on getting better and regaining my strength.
Two years have passed and I’m happy to say I have my UC mostly under control. There are good days and bad days. But this issue of my future family has been poking at me more and more lately. Maybe it’s the countless stream of pregnancy announcements or baby photos that flood my Facebook timeline every day, but it’s something I think about almost daily. Most normal people can scroll through these posts thinking “It’s not my time yet, someday it will be” and go about their day. These posts can be a real struggle for me. It’s like I’m constantly reminded that this may be something I really struggle with someday. Fertility treatments are expensive. Specialized treatments for those with IBD are even more expensive. All I want is to be genuinely happy for my friends who are starting this next chapter of their lives, but it’s extremely overwhelming. When you’re 25 and an otherwise outwardly healthy woman, having to think about these things is painful.
These nervous feelings were exacerbated last week during my Remicade appointment. A woman came in about 30 minutes after my infusion started; she had just had a baby and also has IBD. The infusion nurse wanted to see photos, and it became pretty clear to me pretty fast that this woman had been through hell and back to have a baby. She said she had miscarried in her second trimester four times, and had been trying to have a baby for 10 years. Ten. Years. I didn’t ask her how old she was out of fear that I’d get really scared. She mentioned round after round of failed IUI and IVF treatments, and finally discovering that she had another issue with her immune system that caused it to attack her baby and was causing the miscarriages. She talked about finally getting past her second trimester with her son and being terrified that she’d lose him, too. I already suffer from intense anxiety. I can’t imagine being that anxious for 9 months, wondering if my body will betray me again and make it hard for me to have something I’ve always wanted: a family. I’m 25 years old. This should be the time that I’m starting to get excited about that possibility sometime in my future. Instead, I’m terrified. What is having a baby going to do to me? And worse, will I cause more harm to my body and potential baby than good by trying to have one naturally?
I spent the next hour and half of my infusion with my head spinning, thinking of all the ways that this could eventually go for me. I am a planner, and when I get anxious I tend to come up with Plan A-Z in my head with outcomes and potential game plans so I feel like I have some control. When I finally got to my car, I just sat and cried for a good 10 minutes. I was so overwhelmed. Why is this even something I have to worry about? None of my family has ever had issues like this before. But then again, no one in my family has had IBD. I felt alone, worried out of mind and scared for something THAT HASN’T EVEN HAPPENED YET AND WON’T EVEN BE ON MY RADAR FOR SOME TIME.
That is the paralyzing reality of chronic illness, folks. You are constantly living in a state of limbo, a state of unknown. Not quite healthy, but not quite sick, either. Having kids isn’t something I need to focus on right now. For now I have my dog, and trust me, she is enough of a handful for me to want to put off having kids for another 20 years, ha. But I’ve always known I wanted to be a Mom. Always. What do you do when something that you were so sure of is all of a sudden something that you are terrified of?
What if I pass UC on to my kid? What if I can’t parent because I wind up in the hospital? I have to stop myself from going down that road or else it kills me.
Since hearing that it may be harder for me to have kids two years ago, I’ve met plenty of women who have healthy, adorable babies and also have IBD. I’ve met several women whose disease went into complete remission when they got pregnant and they haven’t had issues since. These stories give me hope, and are what I remind myself of on the days where it can be a bit too much.
I want to emphasize that you don’t need kids to feel complete or have a full life. There are so many people I know that don’t see that in their future, and I respect them for it. I don’t want this to read as “my life will have no meaning if I don’t have a family,” because it will. There is so much I want to do with my life other than be a Mom. The goal here is to spread awareness of the crippling affect anxiety can have regarding your future, especially with an illness like UC.
If you’re young and your only concern is when to have kids, not if you can have them, take a minute and be thankful. Be thankful that you can call the shots in your life, own your own terms, without a big, scary, life-long diagnosis hanging over your head. But, despite obstacles I have to hurdle that others don’t, I’m thankful too. I’m thankful for my family and friends, my wonderful boyfriend who always makes me laugh, my complete comfort in sharing my story that I know other IBD-ers struggle with because I have the means to do so, and my knowledge (that I gained very young) that life is too short to sit around and not try to make a difference. Despite all the struggles, anxiety, and frustration that come with this awful disease, I’m still grateful.
Life will always throw you curveballs. You will deal with grief and sadness and struggles that you can’t possibly imagine. You can’t control what happens to you, but you can control how you feel about it. So, I may not know what the future holds for me regarding that part of my life. But, when it comes, I’ll deal with it the same way I’ve dealt with everything else: