Systemic Autoinflammatory Disease (SAID) Support

Your child has just been diagnosed with an autoinflammatory illness. What next?

For now, I’m not going to address physical symptoms, treatment options or new precautions you must take. There are plenty of places to get help with these, and vary from one illness to another, or from child to child. I’m going to address something much deeper– the mental adjustment that comes along with the diagnosis.

Your head is probably spinning with medical terminology. Suddenly your days are filled with doctor appointments and medication. You are in a fog wondering how you got here. People are telling you things like, “At least it’s not cancer,” as if that makes it easier. Others don’t realize how serious it is, or they think that you’re exaggerating. Some may even think you are making it up. Your child may have been seriously ill before you finally found out what was wrong. And you wonder how on earth you will be able to give your child a painful injection on a regular basis.

You may be wondering how long it will be until things get back to normal and your life can resume. Many feel alone and scared, and don’t know where to turn. Nobody understands how you feel. There have been many sleepless or tearful nights when you cannot sleep, or you finally get the time to yourself to do research online about the disease.  You need a break, but your child needs you.  Often, you try to keep it positive, but inside you are aching and broken.

Yes, it’s overwhelming. Yes, it’s unbelievably frightening. Yes, it stinks. But it is what it is. You’ve been dealt this hand, and now you have to learn how to play it. For yourself, your child, and the rest of your family. But play it you will, because you have no other choice.

I’m here to tell you, it gets better. Cry if you need to, but not too long. Dry your tears and get moving. You will get through it and you will find strength you didn’t know you have.

It’s heartbreaking to learn that a child you thought would be perfectly healthy actually has a serious lifelong condition. You will grieve the loss of your dreams for him similar to how you would when you lose someone close to you. Your world will be turned upside down, then will eventually right itself. The whole family will go through an adjustment period, then you will find a new normal.

Reach out to people in your situation and remind yourself often that you aren’t alone. There are people who have walked in your shoes and can help you navigate this new path.

You will meet some wonderful new people that you would have never otherwise met, and your family will find strength and compassion you could never imagine. Your other friends will try to be sympathetic, but they won’t truly understand your struggles. Not because they don’t care, but because this is such foreign territory that you don’t even know where you are, much less try to explain it to an outsider.

Finally, just take one day or even one hour at a time. (Yes, I know it’s such a cliché!)  Don’t focus on what you have lost. Remember this affects each person in the family differently. Be aware that your other children still need you, and are worried about their sibling. Don’t neglect your marriage by focusing only on your sick child. It’s a lot to juggle, but you will learn. And don’t forget to take care of yourself.

Ask for help. People love to be needed, and often just need a little direction. If you need help with cooking or laundry, ask. Nobody is going to judge you because your house is dirty when your child is this sick. If they do, shame on them! Plus, having them in your home may help them better understand your challenges. Don’t be afraid to seek professional help with this adjustment, or for your child or other family members.  No one should suffer in silence.

Stay close to those you love, take a deep breath, and figure out what you have to do get through today. And search for the story Welcome to Holland. I’ve discovered that Holland is indeed a beautiful place, filled with warm, loving people.

Autoinflammatory diseases include SoJIA, FMF, HIDS, TRAPS, CAPS, CANDLE, DIRA, PFAPA, and others. Click here to learn more.

Do you need support for yours or your child’s autoinflammatory disease? Find a patient group online. There is a growing list on Autoinflammatory.org. You can suggest a support group to add here.

The Autoinflammatory Alliance is a 501(c)(3) non-profit organization dedicated to helping those with autoinflammatory diseases.

Donate now to help with awareness, education, and research for these rare diseases.

*Tulip drawing by Nataliia/Bigstockphoto.com

*Child origami tulip photo by i9370/Bigstockphoto.com