BEHEALTH

Mixed feelings

About motherhood and a chronic disease …

I read the following message:

“And then all of a sudden your son asks you if he can just become a dad when he’s older or if he’ll have to take his disease into consideration, and how I feel about it that he’s going to pass a (genetic) disease on to his children. This just breaks your heart a little …”

And I’ve been thinking a lot about this with mixed feelings …

When I was diagnosed with “ulcerative colitis” at the age of 20, I was very happy that I could give a name and a cause to my symptoms. I didn’t give it another moment’s thought. At least that’s how I experienced it …

Yet, that’s not completely true: I did have a lot of feelings and thoughts, but I tried to suppress them: young, a chronic disorder, maintenance drugs that I would have preferred not to take, an unknown cause but genetics played a role, … I didn’t want any of this and I preferred not to hear anything about it. I had my reasons for that: I had just gone to study, I had a relationship started, and I dreamed about a bright future and a warm family and children. Ulcerative colitis did not fit that image, and so I distanced myself from it as much as I could.

Was this a good idea?

That’s another question …

Yes … by distancing myself and by not giving in to the disease, I would go for what I wanted: my degree, a house, a home and children. Even if this went hand in hand with ups and downs, so be it. There’s always a way, even if it seems as if there isn’t at times. And it looks quite beautiful and like something that should be taken for granted, but you have to know … that nothing is what it seems and that this wasn’t all just handed to me on a plate.

No … because after giving it a second thought, I realized that I was actually walking away from my responsibility. By distancing myself, I would misjudge the risks and consequences of my disorder. I’ve been through tough times, and my pregnancies were everything but obvious. Nor was having to take care of 3 little children every day. Each pregnancy was accompanied by an obstacle, as I would convince myself that it was better to swear off drugs during my pregnancies, despite the attendant consequences. But I took this for granted: “as long as my little ones are doing well, that’s all that matters to me, and I would take on all the discomforts and fatigue”. That was, of course, a complete misjudgment because you’re not worth much when you’re a completely exhausted mom. Whenever I look back at pictures with my little ones in my arms, it hurts me to see how miserable and tired I actually looked.

Well anyway …

I could always count on the support of my parents and in-laws and also some friends who would support me. Eventually, I became who I am today, as a mother and as a patient.

And what about the “genetics” part? Recently, I thought lots about the issue, because of the fact that our children also could have an increased risk of getting the disease. I can only hope that it won’t come to that. And what if that’s how it’s supposed to be … will I blame myself for it? It is once again not easy to give an answer to that. I believe that, as a parent, it’s inevitable to not have a feeling of guilt, but it’s a matter of making this discussible and of learning to cope with it, together.

Or is it selfish to suppress the “possible” consequences for your children and to give preference to your strong desire to have a child?

I’d better not think too much about it …


Inge – 28/02/19

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