This post is from March 2012 and it was written for National Health Blog Post Month.
Dear newly diagnosed patient: Congratulations! Yeah, I know, offers of congratulations are usually left for happy events. I'm sure you're probably feeling a lot of emotions about now. And, maybe happy isn't one of them. But, maybe it is. Maybe, like so many of us, you've been looking for answers for months or years. To finally be able to put a name to your illness is a relief. It's validation that something is really wrong. It's hope. Hope that now you can learn more about your illness and even start a treatment regimen.
Maybe you're scared, overwhelmed and just plain depressed. All of those emotions are okay. Give yourself time to come to terms with what you now know. In time, you will be ready to deal with your diagnosis. Some people jump right into the whole culture of their illness. They read all the books, view all of the message boards, walk for their cause, and, yes, they have the t-shirt. Everyone is different, though, and there is no right or wrong way to be feeling.
The first step after a diagnosis should be coming away from your doctor's appointment armed with knowledge. Hopefully, you had someone with you who could be your other set of ears. Someone who could take notes and ask questions. If you didn't get all of your questions answered, that's okay. Make a list over several days and call your doctor back with your questions. If your doctor utilizes e-mail that is another great way to stay in touch. You may have questions about medication and other treatments, such as physical and occupational therapy, you may be wondering about referrals to other specialists. Perhaps, you are concerned about your children or wondering if you should even have children. Keep an ongoing list in a place you will remember. Now's the time to get organized with your medical records. Hopefully, your doctor either gave you or will mail you a paper stating your diagnosis. Make several copies of this paper to hand out to all of your other doctors and medical professionals you go to. You'd be amazed at how, with a diagnosis, you are now taken seriously, where before, you may have been pretty much ignored.
Once you've made it home from your appointment, your first step may be to search the Internet. That's not a bad thing; just be sure to research on reputable sights. If your illness has a national organization that would be a great place to start. Also, try getting information from websites like Web MD, Mayo Clinic.com, and the National Institute of Health. Facebook has a lot of patient groups and pages that could be a source of information and support. Check your local hospitals to see if there are any support groups for your illness. You'll want as much support as you can get, especially in these early days after the diagnosis.
Telling your friends and family may be difficult for you. Decide who you are going to tell and how much you are going to share. You may share a little at first, then in time open up a bit more. Don't be surprised by all of the medical "experts" you will suddenly know. People love to give advice, much of it will probably be wrong. Just smile and thank the person and go on your way. Don't use up your energy reserves to deal with people who may be well-meaning, but are totally clueless.
Don't let your illness become you. You are still you. You still have dreams. Maybe they will have to change a bit, but maybe not. Make time for friends and family, hobbies, work, and relaxation. Above all: take care of yourself! Now would be a good time to start eating right. This time, really make a change. If you're able, find a suitable exercise routine. It may change daily, depending on how you are feeling. But, just do something. You will feel better about yourself if you're doing everything you can to improve your overall health. Don't forget your mental health. It's okay to talk to a counselor. You have a lot to process and will be dealing with an awful lot as you come to terms with your illness.
Remember, you will be okay!! Many others have gone before you and have made it through this difficult time. You will too.
Hang in there, okay?
Your chronic illness buddy,