There isn’t a handbook to help guide you through being diagnosed with a chronic illness. But there sure is a lot of uncertainty, doubt, and fear. If I could tell myself then what I know now, it would be these five things:
- You must be your own advocate. Doctors will rarely have a course of action for you, you will have to make your own. Healthcare professionals will try to brush off your symptoms, don’t let them. Friends won’t know your limitations, speak up when it’s too much. Your specialist will order a lot of tests (some you’ve had done many times before), sometimes it’s okay to say no. Family members won’t always understand your illness, explain and be patient. Society will tell you that you can’t possibly be that sick, remember you don’t have to prove anything to anyone.
- You are not alone. Although your illness may be rare, the magical world of the internet will provide you with access to a whole community of people just like you. This is your chosen family. You will learn from each other, you will support each other, and most importantly, you will understand each other. Don’t take these relationships for granted. These fellow warriors are your lifelines. You’re in this together.
- You will have bad days. Actually, you’ll have terrible, awful, painful days where you find absolutely no relief. Find comfort in the fact that you’ll also have good days. Even when the good days are few and far between, know that there will come a time when the good outweighs the bad. Just hang in there.
- Your friends will leave. Some of them will jump ship and bail right away, others will gracefully flow out of your life with time, but your true friends will stick around. Even after many last minute canceled plans because you don’t feel well enough to follow through, even after multiple surgeries (it seems that people stop caring as much after your first operation because it becomes “routine”), even after texts unanswered due to depression- the people who genuinely love you will still be there.
- You must learn to accept help. You’re used to being fiercely independent and that’s not a bad thing, but don’t let your pride get in the way of receiving the mental and physical support you need. Your new limitations will be devastating, especially at first. You’ll not only need help learning to cope with all the changes that come along with your diagnosis, you’ll need help with tasks as simple as getting out of bed. Not being able to do everything own your own is frustrating and not being able to do everything you used to do is heartbreaking but you’ll get through with help of others, if you let them.