Now before you read the title, roll your eyes, think a certain way about my perception of parenthood, and/or leave with a bitter taste in your mouth about TwinMomMel, be sure to read the entire article. It’s not what you think.
Having children with a rare condition is not only challenging, but you feel alone. There are many times when your child’s condition is categorized with a diagnosis that is “as close as possible” to the actual medical issue. But what does that mean? It could mean assumptions by new medical practitioners, multiple medical denials, inadequate service from a provider, or simply confusion for outsiders looking in.
What happens when you feel like you’re alone and no one understands? What happens when your child’s medical necessities have been denied because insurance providers, don’t get it? You may question and feel like your efforts are not good enough. You may ponder and second guess your parenting. You may lose trust in your medical team. But one thing for sure is, you will always be that child’s mom.
You may get to a point where you feel like “What Else Can I Do?” That is the very thought that I had a few weeks ago. I was at my lowest point as a mother because I felt like every effort, every conversation, every piece of medical documentation was no longer relevant. My daughter, who has a very rare condition, was denied several medical necessities. Add on the never ending medical bills in the mail, I was almost to the point of throwing in the towel and putting my hands up, because I did not know what else to do. But the ounce of fight that was left in me put on it’s boxing gloves and I got a second wind. Here are 3 things that I did that helped me Fight Back:
1. Speak Up
The last thing you want to do is internalize your frustrations. Now I am no psychologist, but I do know there is something about getting your feelings out. Whether it be writing them down in a journal, talking privately to someone, or going as far as what I did and reaching out for help to your network of supporters on social media. Whatever it takes, don’t hold it in. Let someone know and ask for help if you’re in need of answers or suggestions from others.
2. Get a Case Manager
If your frustrations are medically related, find out if any of your providers have a case manager. Most doctors offices and hospitals are staffed with one, if not, they should have an advocate that is there to provide additional documentation and start appeal processes (if need be). Although your doctor’s are the ones that usually submit the referrals, they also are human, and mistakes happen. Be sure to fully read over any paperwork because medical denials could be related to wrong diagnosis codes or other information that only takes a quick correction from your provider.
3. SHIFT your mindset
This is so important. My life coach (Dr. Ali Griffith) saw my downward spiral happen, but she was right there to pick me back up. One tool she suggested I use in the future is called “Shifting”. Now when she first mentioned this, I wondered…How is thinking about something else going to help? Well the purpose of shifting is to distract you from what is bringing you down. Shifting may not fix the problem, but it definitely will help you recover and gather yourself accordingly, so when it’s time for you to tackle the problem again, you will be stronger than before.
Now those are just 3 of the many tools that I used during my “I Give Up” moment. But weeks later, I am stronger than ever. Although my situation knocked me down, I did not stay there. The change in me did not happen over night either, but the good thing is, I no longer want to Give Up, nor is that a thought in my mind. At the end of the day, we are all human, so there may be days where you feel like there is nothing else you can do. But I am here to tell you, keep fighting and you will get through it!