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  • Rachel March, LCSW

5 Things to Know When Diagnosed with a Chronic Illness

A new diagnosis of a chronic illness can bring a wide range of emotions. Sometimes there is relief at finally having a name for the symptoms you’ve been experiencing. Often there is fear about what this diagnosis means and what happens next. There can be apprehension about sharing the diagnosis with others as that can make everything feel more real. All of these responses and many more are completely normal responses to learning you have a chronic illness. Here are a few tips to follow when newly diagnosed with a chronic illness.

--> Don’t Google!

It can be tempting to start researching a new diagnosis online but that most often leads to increased anxiety. There is a lot of good information online. There is also a lot of misinformation online. It is natural to want to know everything you can about your chronic illness *and* it is important to get that information from a credible source. Talking with your doctor and care team is a great way to get individualized information about your chronic illness. You can ask for a conference with your care team just to have questions answered outside of your regular appointment. You can come to a conference or any appointment prepared with pen, paper and questions ready. It is also helpful to have a supportive friend or loved one attend your appointment with you because they may think of different questions or hear details you might miss.

--> Take time to process

You’ve just been diagnosed with a chronic illness after experiencing a range of symptoms for some time and you want to know what’s next? What are the treatments? When will I start to feel better? These are all typical responses to a new diagnosis and valid questions to want answered. It is also important to give yourself time for your diagnosis to sink in. Hold space for your emotions. Acknowledge them, and allow yourself to process this life changing news. There is often a grieving period associated with a new diagnosis of a chronic illness. Holding space for sadness, anger, confusion, frustration or vulnerability is an important way to grieve the losses and changes that come with a new diagnosis.

--> It is your news to share, or not

Some people love to share new information with family and friends, to feel supported and cared for by others. Some people want to process the information themselves and learn as much as they can before they tell others what is going on. Both are OK! It is your news to share. And you don’t have to. You can share exactly what feels right to you when it feels right to you.

--> Find your community

Your community may include family and friends who are supportive and able to help you with whatever you need. Your community may also include the uber driver who takes you to your appointments. You get to choose your own community! Sometimes we learn that the people around us aren’t able to be a support in the way we thought, and that requires us to look for support in other areas. With a new diagnosis, people often find support in reaching out to others who have experienced the same illness. There may be support groups available in your area or online that can connect you with a network of people who have similar experiences and diagnoses.

--> Know who to ask and where to look for help

A new diagnosis brings many challenges- sometimes financial, sometimes needing therapies and equipment that are not readily available. There are many advocacy groups and community agencies that are able to help connect you with the support and resources you need. Ask your doctor or care team for more information on advocacy groups for your specific chronic illness to learn about programs to help you get necessary equipment and treatments. Don’t hesitate to ask your health care team for any financial resources that would help you get the care you need.

If you have a chronic illness, newly diagnosed or not, and are having difficulty processing your diagnosis and the changes associated with it, I would be glad to help you process through therapy. I work with my clients on accepting their emotions and moving forward living according to their values. Please reach out to schedule an appointment today.

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