What now?

What do you do now? Where do you go? What's next?

You've done it! You managed to get a diagnosis, congratulations! But now you have a lot of questions and your not sure where to start. You just ended one battle and now your facing a horde of new ones. You've asked your doctor for information and maybe they have given you a pamphlet or a website to check out.... or nothing at all.

Firstly, you have a chronic condition. You need to learn to pace and rest properly. This illness is going to take managing. Your also going to need the support of friends and family (born, made, found). Be honest and up from with them from the beginning. Getting frustrated with them when they don't understand your new limits isn't fair to either of you. I wasn't honest with some of my family about what was happening and that lead to them being frustrated and angry with me when I didn't behave and perform as my old self. Understandably they thought I was making selfish decisions. This caused a lot of hurt. Family is powerful when it comes to fighting off depression, fear, isolation and hopelessness. Do not be ashamed or try to diminish your struggles.

Find your tribe. You are not alone in this no matter how rare your condition. You are going to need resources outside your current support system. Get out your device and start searching. There have been people managing this illness on the internet for decades now. Find forums, search Reddit, there will be a Facebook group, probably dozens. Find one. Any time you have a question someone probably already asked it. Did they ask on it Discord or Twitter? What about Instagram? These are incredibly useful platforms with many people like you willing to help answer questions and provide invaluable support. We are isolated up here and that makes the internet our life line to the resources we need.

Advocacy. There are support groups and advocacy groups that can provide pivotal resources. I found a whole document on how to apply and appeal for disability specific for my condition. It walked me through the whole process. There will be resources and information that will help you navigate systems and make decisions. What each group offers could differ quite a bit so check as many as you can. I cannot stress how valuable some of the resources, people, and their time and effort are.

Learn. Learn everything about your condition that you possibly can. Find research centers and read the latest findings. You will be better prepared for talking with your doctor and making decisions. You may find yourself in a position where you have to inform your doctor about certain aspect of your condition. Family doctors are generalist and cannot learn everything about everything, and often have out dated information and beliefs. You won't know this if you don't make yourself and expert on your illness. You work with your doctor. Information keeps you safer and gives you more control over your condition. You are the only one responsible for your health. Your doctor does not get penalized for making a poor or harmful decision about your health.

The struggle. When you are feeling despondent, frustrated, or starting to lose hope visit those forums and support groups that you found earlier on. Scroll through the research centers you found when teaching yourself everything you could. Look at all the people who are working hard to better understand your illness and eradicate it. Things are always changing. Yes it is slow, painfully so. But there are tiny steps taken every day and every once in a while a giant leap forward. And don't forget to make an effort to see family and friends, they are powerful medicine.

Fight. You fought your way to a diagnosis. Many people go undiagnosed, up to 90% for some conditions. That may of been a hard won battle for you of many years. I see you. Recognize how far you have come. Keep fighting, you will find more resources, use them. Grow your community, start a new one if you find none. Give yourself new purpose. There are about to be a lot of new beginnings. Not the ones that you thought you were going to have, but perhaps just as rewarding. I wish you the absolute best that is possible and that this site has alleviated some of the stress and fear you may of been experiencing. You have won one battle, another is about to start, and you are a fighter.