What I Learned From Talking to Other Parents About My Child’s Disorder

What I Learned From Other Parents When Talking About My Child's Disorder

 

Talking to other parents. It’s one of the things as a parent that can lead to great pleasure. You find out your child isn’t actually that different than other children. You feel relief in the fact that you are not alone. However, there are conversations that lead to the opposite feeling when we are parents.

Sudden Fear & Panic
When our child has physical, mental, social, or other health issues, engaging in a conversation with other parents about these topics can be scary. We want to reach out and connect, but it comes with a lot of fear of judgment and anxiety of misunderstanding.

It’s OK to talk to other parents and ask questions about their children to do a mental comparison to your own. We all do it. When we were seeking answers for an unknown fever at the very beginning that is what we did. I would go out with my friends and quiz them about how often, frequent and intense their child’s fevers were. Did they coincide with other events? Like teething? Or just illness? Did any of them have fevers and didn’t seem sick? I asked a lot of questions (until my son received his PFAPA diagnosis).

I very quickly learned these things:
1- It scared the crap out of other parents when they finally asked me why I was asking so many questions. As soon as I described my son’s condition by symptoms fear flashed into their eyes. Then pity. I didn’t want fear or pity, but I soon became accustomed to the looks. (At the time I had no name for it, and it sounded totally bizarre and odd).

2- Nobody had an answer for me. I had to learn to seek information for my internal processing only. I could not expect an answer. After a handful of chats I realized whatever my son had was rare. I was not going to find another adult to connect with on the topic. I had to seek information just for myself. Sometimes it was just to confirm that he was indeed different and I was not imagining what was happening to him.

3- Most people would try to disregard what I described. They were good at chalking it up to one of their own child’s issues (i.e. teething, illness, not napping, etc etc). They did this to rid themselves of fear and panic. What if something were to be wrong with their child? They were internalizing my own fear and it was overwhelming for them. They didn’t want to make me feel lousy (but they often did). They were just trying to hope for me. They wanted to hope that it was as simple as teething.

So why should we bother talking to anyone?
You might find a simple answer to what you are asking about. Perhaps one of your friends had a child that was the same way and it was simple. Perhaps one of your friends has a child with a less simple answer but the same disorder. This is a friend you will always need. Not that you don’t need the rest of your friends, but when there is something wrong with your child you need allies who have been there done that.

What if you are like me and had no answers and just talk? That’s OK too. You just have to remember when engaging in conversation it’s just for you. It doesn’t matter what they say. It’s just information. Do not let others make you feel diminished. You are not. You are a concerned parent seeking answers for a sick child. Whether that child’s case is complicated, rare or just plain and simple, you have the right to ask and talk to others and not be judged or diminished. Remember you will likely not get an answer from another parent. Expect only information to judge in your own mind.

Every parent struggles with something
Another thing to keep in mind is that every parent has challenges with their child. If the person just can’t stop comparing, you can change the subject. But if you don’t want to you can always do what you need them to do. You can empathize. It is hard being a parent – no matter what. You can relate your story and situation to them in a way that they too connect and empathize with you. Their struggles are just as real as yours. Some people struggle more with some things than others. But we are all parents and it’s all difficult.

 

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6 thoughts on “What I Learned From Talking to Other Parents About My Child’s Disorder

  1. Thank you for this post! Very well said!! I came to them point where I don’t even say what my son has. I just say he’s not feeling well. What’s the point off explaining, even doctors for 2 years said “yes kids get fever and mouth soars it’s normal”.
    By the way, everytime my son gets a masquito bite. It causes a flare and episode if PFAPA. But the specialist thinks it’s a coincedse. Has your child or anyone with this condition been through that? My son actually gets a big blister like a burn

    1. Amy: It is very frustrating dealing with physicians who are unfamiliar and have no experience in dealing with autoinflammatory conditions (which is primarily all doctors in some parts of this country). The doctor has no idea, which makes them uncomfortable. And I have found that a doctor admitting they know nothing and relying on you to provide helpful information is always better than one acting as if they have the answer for something with no answer. But very few physicians (in our experience) will admit to knowing nothing about autoinflammatory conditions.

      I am not overly surprised to hear about your son’s issues with bites. It does seem like, even small things, that trigger immune responses have a larger effect on our children. I haven’t read anything specific about this particular situation with mosquitoes, but I can speak from personal experience with Parker. He had severe reactions to bees (not in the allergic sense but externally) as well as products and other contact-driven products. They do tend to aggravate his condition or circumstance (depending on the chemicals). I do offer a lot of information in the healthy living section (tab at the top) about changing your lifestyle to try to lessen these types of incidents that could be aggravating your child’s immune responses and episodes. I hope you find them helpful. It really has seemed to help Parker and myself in our house to lose a lot of product chemicals and find organic or home-made versions of the products for ourselves.

      If you have a specialist for your son’s PFAPA you could ask them about the bites in particular. Good luck and thank you for sharing and reading.

  2. Hello, I have a 9 year old with PFAPA. He was born with a fever and has had a episode every month untill he was seven. After a 2 year break, he has started twice a month episodes that are more severe. We have to go back to the doctor and see what’s available, we are even considering having a tonsillectomy.
    Throughout the years, well meaning friends and family have tried to explain why my son gets sick, we get everything from “he needs to be baptized” to try a gluten-dairy free diet or high doses of vitamin c and probiotics or the typical it’s just a virus nothing major.
    I feel so overwhelmed and worried, he is going through an episode right now (sleeping after motrim) and its not easy to see him go through this, so many times.
    I know he will feel better in a couple of days, just venting…..

    1. Paula: I totally know how you feel. It’s hard for others to understand autoinflammatory conditions. Your children seem “fine” for awhile and then they are not and it’s hard for people to grasp something so very different. We have had a lot of the same types of comments in the past as well. I get a lot of messages offering up dietary and other changes to “cure” him. It is overwhelming and worry is normal (and absolutely stinks!). It is not easy for those kiddos to endure what they do. For sure! We too had a similar circumstance with Parker. He had episodes every 23 days (sometimes less sometimes a few days more) and then we had about 1.5 years of a break but it came back with a vengeance. It was very intense for the first few months of it’s return and then was back to it’s “usual” state. Hoping each episode is the last is part of the struggle. It’s always so disappointing when it’s not! Good luck. Always feel free to share your thoughts on this site. That’s why we are here!

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