What’s up mom

What’s up mom …

At the age of twenty, I was diagnosed with ulcerative colitis, and as I was busy studying, I wasn’t even thinking about starting a family. I didn’t really take the diagnosis for granted and thought: “My problems finally got a name, I’m getting the right medication and I can go on with my life”. The fact that it was a “chronic” disorder was something I preferred not to think about. Yet, periods of remission were followed by flare-ups, also during my first pregnancy in 2004. I do blame myself a little for the many obstacles during the period of my diagnosis till 2015, as I was quite careless about taking my meds and I kept on insisting that I wasn’t really sick. Two pregnancies followed in 2006 and 2008. I also ended up in hospital during the last one. So my children only know me as the mom with IBD and they’re actually quite used to this. They have no reference period before my disease. They are therefore very well-informed about my disorder and I have never avoided the conversation with them.

Taboo …

So, my children grew up with it. As they grow older, it becomes easier and clearer to talk about it. When they were little, they knew that “something” was wrong with mom, which made her go to the bathroom very often. The fatigue involved, would not really be talked about. I had quiet children who would take a nap with me in the afternoon or who enjoyed watching TV so that I could take a nap on the couch. Within the walls of our “save” home, there weren’t many taboos, and the door of the bathroom was always open. As I would fight off stomach aches or cramps in the bathroom, the children would come in cheerfully and swiftly to share their stories or to play close to me. I wouldn’t make an issue out of it either. Meanwhile, the oldest one is fourteen and she’s a fantastic girl with a very mature attitude for her age. Making themes such as IBD and living with an invisible disease discussable is so important. However, when you expose a part of yourself in doing so, you can’t do that without consent of those close to you. Your partner and children unconsciously play an important role, and they need to be aware of that and decide whether they like the sound of it. My daughter of 14 is truly very enthusiastic. She literally told me: “Mom, I think it’s wonderful that you’re sharing your story because we keep on experiencing people who have no idea.”

Heartwarming support …

Usually, children react in a very mature and positive way. They also think along spontaneously and look for solutions in tough situations. It’s become a game to be the first one to point out where the bathroom is when we go out for a trip. A while ago, my son and I were going somewhere by car. Instant stomach aches and cramps came up. I did not have the time to park the car and to look for a bathroom. I had a terrible feeling, I felt humiliated at that moment, because I was doing it in my pants while driving. As we came home, I said with tears in my eyes: “Sorry little guy, don’t worry about it, mom just really needs to go the bathroom right now, I’m going to take a shower and you’re going to be a good boy playing over there”. The reaction that I got was heartwarming: “Mom, that isn’t something you should apologize for, that could happen to anyone, including me”.

And confrontation too …

Of course, at times they have enough of my whims, and that would create a negative atmosphere at home. One year ago, when I was really tired and exhausted, I got a remark: “You’re a boring mom, my friend is off to an amusement park, another one went to the movies yesterday, we never organize birthday parties, we never do anything fun. And that’s because you’re always tired!” I am sure that they do understand, but it’s difficult sometimes. Going on a trip to an amusement park or traveling around is not as obvious as it seems. I would use Tena pants for a while, so we would go somewhere for a trip. No-one would be able to notice it, but the thoughts constantly haunted through my mind: look at me walking around here, a bundle of desperateness. You really only do it to give your children and your partner a great day and to not burden them with humility when things go wrong. But you know what’s on top of the list? The moments when you need to let go of all control when you’re being hospitalized. Those are the moments when I really feel like a mom with shortcomings. Two years ago, during a hospitalization, I went through a truly rough moment, and I eventually had to make an appoint with the psychologist. I learned a lot from it: it’s okay to put myself first every now and then and I shouldn’t be so hard on myself.

Understanding …

People react very differently and that’s mainly linked to the degree to which they can and are willing to imagine themselves in this story. I can always count a lot on my parents and in-laws and some very good friends. One important lesson: You get to know who your real friends are over time. Some give up on friendship. They believe that you should be feeling better by now after so many visits to doctors, and do not understand the “chronic” part. Although, others do have that understanding. And you got a bunch of variations in between. For a very long time, I had the feeling that I had to do something extra to prove myself to my surrounding, to pretend to be strong. For quite a time this went all well and good. But that isn’t something you can keep on pretending. When I was hospitalized, it felt as if dark clouds were looming above my head. I realized that it was no longer possible to have two faces: the happy and strong mask outside the house ­­­– the tired and painful mask behind closed doors. Ever since then, I’ve been open and honest about my disease in a positive way: it is what it is, I don’t have to make it worse, but I don’t have to disguise it either or to hide it away. That’s exactly my message to fellow-sufferers who are diagnosed at a young age just like me: You don’t have to make it hard on yourself as I managed to do for so many years. You can be who you want to be, with all your strengths and all your weaknesses too.

Stronger together …

My husband is self-employed and for many hours, even on the weekend, he’s up and about for our business. I find it fantastic that he does all of that so we can have everything at home that we need, and I try to support him as well as I can by taking care of the administration. I usually dedicate my mornings and evenings to taking care of our children, even on Saturday. Our days are really well-structured. I need that structure to avoid extra stress. Meanwhile, my children are a little older now and more independent. Sometimes I really wonder how I managed it all when they were very little. The answer: Thanks to mother’s and my in-laws’ support and help and by timely allowing myself a moment of rest in the afternoon. There have been many years that I haven’t done groceries on my own, as my mother would always join me. Being around her made me feel stronger, she would keep an eye on things for the children, and I could run away to the bathroom at any time without having to abandon the children. Trips are for Sundays when my husband is home as well. It’s always the same story: I feel stronger when my partner helps me along the way. I’ve learned to hand over control every now and then. I can always call my mother and in-laws for help, and I also have some friends on whom I can rely. I am so grateful for what they do.

Key message …

During the past year I learned that you are not your disease. Above all, you’re a human being, a mother/father, a husband/wife, a friend, … and sometimes a patient too. That’s not something you should be ashamed of. It’s a part of who you are, a part that you better try to embrace. In the end, we’re all people among each other with a name, personality and a story and a past, present and future.

Inge – 12/05/19

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