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5 Things to Do After Receiving a Chronic Illness Diagnosis

Receiving a diagnosis — particularly one for a chronic, potentially lifelong condition — can be a very emotional experience. At times, having a diagnosis can bring feelings of closure or even comfort at finally having a name to connect to symptoms. However, a diagnosis is just as likely to bring up feelings of isolation,
loneliness or even hopelessness as someone reevaluates how to live their lives
with an illness or disease.

Keeping these conflicting emotions in mind and drawing on my personal experiences in being diagnosed several different times with multiple chronic illnesses, I have put together this list of five important steps that I believe might be helpful for anyone who has just received a diagnosis and is wondering what to do next.

1. Make sure you’ve been properly evaluated.

Physicians most often go to great lengths to ensure they are properly diagnosing
patients. However, just like any other person, physicians can make mistakes — and do, which sometimes results in people being diagnosed with the wrong illnesses or diseases. Because of this, I believe it is imperative that patients take the initiative to be their own advocate and ensure their physicians, counselors, etc. have used the proper and most up-to-date diagnostic criteria in your evaluation. If you find there are additional diagnostic tests that should have been used, you should at least ask your physician about these tests or find another physician who is willing to explore them. You have the right to the best care possible!

2. Research your condition.

Once you and your physician are as certain as possible that the diagnosis you have
been given is a condition you actually have, it is important to research your condition as much as possible. Again, this falls under the category of serving as your own advocate — physicians and other medical professionals will hopefully always do as much as possible to help their patients, but at times it is necessary to make sure your care is up to the highest standard by being as informed as possible. Becoming an expert in your own condition will not only ensure you are receiving the best healthcare possible, it may also help you to feel more comfortable and at-ease with your condition as you become more and more familiar with it.

3. Make a treatment plan you feel comfortable with.

Hopefully, upon giving you a diagnosis, your physician or other healthcare professional also began discussing a treatment plan with you. However, if you have begun researching your condition and have found additional things you wish to add into your treatment plan, you should discuss these things with your doctor
as soon as possible. Even if these additional aspects of your treatment are non-medical in nature (like yoga, supplements, aromatherapy, etc.), it is never
a bad idea to discuss adding these things to your treatment plan with your
doctor and come up with a plan together that works for you both. You are not
powerless, and you have a right to treat your condition in the way that works
best for you.

4. Tell your family and friends.

This may be the most difficult recommendation on the list, but I believe it is also one of the most important. Talking to family and friends about your illnesses or diagnoses may seem unnecessary; you may not want to “burden” them, or you may simply fear that they will not be able to understand. From experience, I have learned that friends and family will often surprise you at just how willing they are to be there for you as long as they know what you are going through. Telling friends and family about your diagnosis can make them more understanding and open lines of communication, making it easier for you to call on them for support. Your friends and family love you and are in your life to support you. Although it is difficult, keeping them informed can make your life and your relationships significantly better and easier in the long run.

5. Take time for self-care. 

At the end of the day, remember that you are more than your diagnosis. Rather, you are a whole person, whose holistic needs deserve to be taken care of. Often, taking care of oneself can mean taking time to do things that might otherwise fall way down on your daily priority list. Taking time for emotional self-care, whether this means taking time to do something creative, something quiet or something relaxing, can make the process of receiving a diagnosis a lot easier.

Even though it may seem indulgent, I cannot stress how vitally important it is to take care of and take time for yourself, particularly during the diagnosis and evaluation process. So go ahead — do some adult coloring, knit, listen to your favorite music, watch your favorite film or television show, cook an elaborate meal just for yourself, sit out in the sunshine, take a hot bath, pray, do some yoga, or simply take a couple of long, deep breaths. You deserve it!

The author standing in front of a mountain landscape with the ocean in the background

Editor’s note: This is based on one person’s experience and should not be taken as medical advice. Consult a doctor or medical professional with any questions you might have.

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