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4 Things to Do If You Were Just Diagnosed With a Chronic Illness

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Getting diagnosed with any sort of chronic illness can be sad and overwhelming. You may have to mourn the life you used to have and accept an alternative future. Whether this is for you or someone you love, your first step is to take a deep breath and let it sink in. Then get yourself into gear.

As someone who has been diagnosed with fibromyalgia and Ehlers-Danlos syndrome, I have been dealing with worsening symptoms of chronic pain and fatigue since childhood. Through the years, I have gained some perspective on how best to cope with being chronically ill. These are the four things I wish someone had told me when I got diagnosed.

1. Get organized to manage your chronic illness and treatment.

You will most likely have to be seen by many doctors, and with that comes a ton of paperwork that you should keep for your personal medical records. Doctors will ask you questions about what other doctors have said in the past, so having those answers at the ready has been extraordinarily beneficial. This applies to medication as well. If you end up like me with an entire drawer of medication, it’s important to keep track of when they need to be renewed and that you take them on a daily schedule. Trust me, it helps.

2. Accept the fact that some people in your life won’t understand your chronic illness and may not be supportive.

Many chronic illnesses are invisible illnesses, meaning even though someone is struggling, there is no outward indication. Therefore, there are people who believe it is psychosomatic. The more you try and convince them, the more frustrating it will become. Accepting that from the start will decrease the amount of emotional pain someone will go through. The people in your life who love you unconditionally will always be supportive, so lean on them and disregard those who don’t accept your new reality.

3. Reach out, because you are not alone.

The fact that you are reading this is a good first step. Being sick can be extremely isolating because you feel, rightly so, that the people around you don’t understand what you are going through. Feeling alone only exasperates your symptoms and greatly influences your mental health. Join a Mighty online community to connect to others going through a similar situation. Get advice, learn something new, or just vent to people who actually know what you’re going through.

4. Do research on your chronic illness.

While doctors are extremely educated, they are not infallible. This is not to say you should self-diagnose or that Google knows more than your doctor, but don’t just sit idly by waiting for the universe to give you an answer. Go out and search for additions to the regime your doctor gives you. Supplements, vitamins, anything that may help you get through the day.

And always remember you are stronger than you think. This is only a small fraction of who you are, so don’t let it engulf your life.

Getty image by 5second.

Originally published: October 15, 2021
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