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When People Judge Me as the Parent of a Child With a Rare Disease

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One of the harder things that I have had to learn to deal with since becoming a parent of a child with a rare disease is that of judgment. I have felt (real or perceived) judgment from family, friends, other parents of kids with disabilities, therapists and strangers.  I know all parents probably feel judged for their decisions at some point, but I think it goes to another level when you are a parent of a rare disease or medically complex kid.

What people do not realize is that no one judges me more than I judge myself.  I don’t need the added pressure of someone else’s judgments. No one can fully comprehend the amount of pressure that is on me at any given time. I have to make so many decisions that are practically life and death on a weekly if not daily basis. My brain goes into overdrive trying to sort through information and make the best decisions possible for my son, my other children and my husband and I. I have to think through each decision’s path, not just for the immediate time frame but also for the short-term future and the long-term future. It is hard to put into words what the daily stressors are but they are more than a typical person would expect.

I have seen the looks and heard the comments.

You think I am being too cautious. You think I am not being cautious enough.

You think I put my rare disease warrior first too much. You think I don’t put him first enough.

You think I am not keeping things clean enough. You think things are too sterile.

You think I keep my son in too much of a bubble. You think he is allowed to do too many things that might risk his health.

You think I am too controlling of him/the situation/other people. You think I do not control him/the situation/other people enough.

You think I trust the doctors too much. You think I do not trust them enough.

You think I ask too many questions. You think I do not ask enough questions or that I do not ask the right questions.

You think my husband and I do too much for ourselves. You think we do not take enough time for ourselves (self-care).

You think we do too much for our son and are making him too dependent. You think we do not do enough for him and he is too independent.

You think if we tried certain foods he would be better off. You think we shouldn’t worry so much about what he eats.

You think we do too many holistic approaches. You think we need to try different holistic approaches.

You think we spend too much time and energy on therapy. You think we need to attend more therapies to improve his progress.

You think we worry too much about the future. You think we do not worry enough about the future.

You think we spend too much time on our rare disease warrior and not enough on his siblings. You think we do not spend enough extra time with our warrior as he is the one who needs the most help.

You think we expect too much out of his siblings and that they have too much on their shoulders. You think we expect too little out of the siblings and they should help out more.

You think we have too many balls in the air and are bound to drop one. You feel like you need to add more to our plate.

You think we spend too much energy on relationships with family and friends. You think we do not spend enough energy fostering relationships with family and friends.

You think our choice/decision/path is wrong. You think you know what’s right/would do it differently.

The fact is you are not in our shoes so you do not know what exactly we are going through on any given day. I remember when I was younger I used to homeschool a boy with a disability. Occasionally his mother or siblings would respond to him in some way that as an outsider/educator I could see reinforced the usually bad behavior. I never commented or judged because I knew while it was easy for me to respond in a way that wasn’t reinforcing, I did not have to live with the behaviors day in and day out.

Sometimes we do things that we know are not the best choice but they are what we need to do to survive the day today. For some families that may mean too much screen time or too much doing for the child. For other families, it may mean sticking to a rigid schedule.  Whatever the case, we do not need the judgment that is usually thrown our way. Remember we are overwhelmed, sensitive and at any given moment a breathe away from falling apart. Even well-meaning comments can sometimes come off as veiled judgments. “Hey, you have a lot on your plate this week, can I send over dinner?” sounds a lot better than, “Take out again? Do you need me to cook for you so you get a healthy meal?”

During the first year of diagnosis and treatment, I have let those judgments hurt me.  Some days they leveled me depending on what else I was struggling with and who was doing the judging.  Especially during that time, I was at my max emotionally and physically and I was doing the best I could. I know many of the comments were made out of concern and an attempt to help. Some were made with the best of intentions whether it was for my son, myself, or our nuclear family. I have had to work very hard to learn how not to take those comments/judgments personally. In some cases, I am still working on forgiving what has been said to me.

I know my husband and I have the most information about my son’s treatments, disease and lifestyle. We alone are able to make decisions that work for our son and our family.  Will we make wrong decisions at times? Probably. Will we overreact once in a while?  Most likely. Will we underreact at times? Unfortunately. But the fact of the matter is the decision-making rests on our shoulders and we are the only ones who truly have to live with the choices we make, day in and day out.

Originally published: February 22, 2021
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