To the Patient Just Diagnosed With Chronic Illness

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 right now. And maybe happy isn’t one of them. But, perhaps 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 often a relief. It’s validation that something really is wrong. It’s hope. Hope that now you can learn more about your condition and even start a treatment regimen.

Maybe you’re scared, overwhelmed and just plain depressed. All of those emotions are OK. 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 OK. 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, and you may be wondering about referrals to other specialists. Perhaps you are concerned about your children or wondering if you should even have them. 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 document to hand out to all of your other doctors and medical professionals you see. You’d be amazed at how, with a diagnosis, you are now taken seriously whereas before you and your symptoms may have been 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 sites. If your illness has a national organization that would be a great place to start. Also, I recommend getting information from websites like WebMD, Mayo Clinic or 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 may be one of those people who needs a lot of support – especially in these early days after the diagnosis – and it’s good to get that in a variety of ways.

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; consider talking 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 OK. Many others have gone before you and made it through this difficult time. You will too. Hang in there, OK?

Your chronic illness buddy,

Shari

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