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7 Pro Tips to Help Deal With the Anxiety of Rare Disease Parenting

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Do you ever feel like you are walking around in a fog, heart beating so fast, mind racing and constantly worried about the unknown?

This is an accurate description for one of the ways anxiety can present. I should know. In addition to being diagnosed with bipolar disorder and anxiety, I also have a child with two rare diseases: persistent fetal vasculature and microphthalmia. In other words, there’s lots of life experience here.

However, I want to discuss the anxiety that oftentimes comes with being the caregiver of someone with a rare disease. This isn’t an easy road. Also, it is not a road that anyone can prepare you for. When Scarlett got her diagnosis, I felt like someone threw me out of a plane with no parachute. You hit the ground hard, but somehow are still alive. Heart racing. Grasping for breath. Tears filling my eyes.

I’m getting anxiety now just describing it.

That was my first anxiety attack as the parent of a rare disease warrior. The first of many, many new worries. While there is no magic formula to make your anxiety just disappear, I hope to give you a few more tools along the different stops in this journey.

1. Can we just get a diagnosis, please?

For some this happens quickly, but for others it can take years. I hate to admit that a concrete diagnosis may never happen for some. No matter when you get a rare disease diagnosis, the time of waiting for news or updates is riddled with anxiety.

You go from the complete unknown to “what is that” in 3.5 seconds. It’s a lot to try and take in. Don’t be afraid to let yourself breakdown every now and then. That is a great way to get out pent up emotions even if you have to hide in the bathroom or make a quick trip to the “store” to do it. Let it out.

2. Advocate when others tell you something is “not medically necessary.” 

Rare diseases require all kinds of medical tests, devices and outside assistance — from wheelchairs to therapists to specialty beds. There are so many items our children need. While insurance companies are not usually our friends, getting these items and services come with a lot of stress and worry. Many times, insurance companies say these devices or services are not “medically necessary.”

This is where we, being the rare warrior Mom and Dads that we are, fight for what our children’s needs medically. My best advice to help ease the anxiety during these times is to have a support system just for dealing with insurance. This can be a combination of family, friends, and staff from your child’s doctor’s offices. This will help take some of the worry off of your shoulders, especially when you have a team that is just as invested in your kid as you are.

3. Try your best to stop comparing your life to everyone else’s.

In today’s age, this is so much easier said than done. Your child is on their own timeline. Some tasks they will master on time while others may never happen. There is no such thing as a perfect life and letting your anxiety get to you about this is unnecessary. So no need to let it get there. There is also no such thing as “normal.” Your life is your own with its unique challenges. Make sure that you and your family have a counselor or therapist to see regularly or as needed. Having someone to talk to outside of your friends and family is necessary.

While this is only a small window into all the things that can cause anxiety for the parent of a child with a rare disease, there is so much more. Here’s some extra tips or activities that can help with managing the stress of it all:

  • Journal
  • Exercise regularly even if only for five minutes a day
  • Meditate
  • Find a support group (most likely online but these are some of the best friends – no, family — I have).
  • Remember to take care of yourself too.
  • Have a back-up that can come in and take over any time in case you have to take a break from it all.
  • Stay as up-to-date as you can (if you can) on new treatments and medical knowledge regarding your child’s condition. In other words, make the unknown less so.

This road is not easy. I don’t think it ever will be. We are going to worry. Worry leads to anxiety. It’s going to happen. Just take a breath and manage what you can, like your anxiety.

The author's daughter, smiling.

I promise their smiles and giggles make it so worth working through all the hard times. Just keep moving forward one teeny step at a time, even if you feel that you cannot.

You’ve got this.

Originally published: November 19, 2019
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