How To Cope With The Rare But Serious Diagnosis

Written by - Reviewed by Consumer Health Digest Team

Published: Jun 22, 2018 | Last Updated: Dec 5, 2019

Cope with Rare and Serious diagnosis

There are more than 6,800 different rare diseases that affect a total of about 25 to 30 million Americans. A rare disease is classified as such if it affects less than 200,000 people within the United States at any one point in time.

Although rare diseases are rare in that they are less commonly diagnosed, they still exist and will, therefore, be diagnosed in some individuals some of the time.

If you end up being one of the ones to be affected by a rare disease, it can be overwhelming and make you feel isolated, and perhaps even helpless.

You might be left thinking how not many others are facing what you are facing and you do not know much about the disease and all that comes with it.

However, with the right actionable steps taken after a diagnosis, you can better manage this new information and help yourself to hopefully get better more quickly.

1. Find The Right Doctor

The first thing you need to do after your rare disease diagnosis is to find an excellent specialist to be on your team in fighting this new medical issue.

Finding a doctor that has knowledge about and experience in working to treat your specific illness can make all the difference in how you are able to combat it.

Search for reviews of doctors, check out their levels of experience, and of course, look to see who is nearest to where you live.

Then, if you have options, meet with each of them to see whose personality you relate to best and who you think will overall best be able to suit your needs.

2. Do Your Research

Disease Diagnosis
Gain as much knowledge in regard to your rare disease diagnosis as you are able. Speak with medical professionals who can share information about other cases they have seen, read books on the subject, and search the internet.

“Knowledge is power”, as the common saying goes. Equip yourself and strengthen your ability to potentially fend off your rare disease by learning as much as you can about it.

3. Start A Log or Journal

Your doctor will want detailed accounts of any symptoms that you are experiencing, side effects from medicines, and if (and if yes, then also how) what you are feeling is changing day by day.

All of this is far too much to retain in your memory and recall when you go to your next appointment. Help yourself to be able to accurately share this information with your doctor by keeping a comprehensive daily logbook or journal.

4. Communicate With Loved Ones

Loved Ones
It can be difficult to be vulnerable and to share personal information with others, but let those closest to you know exactly what it is you are going through and how they can best help you.

Communicate to them what you know about your diagnosis and the steps to try to treat it moving forward. Allow them to help you through your disease by first letting them learn what you are experiencing and how they might be able to help and be supportive of you.

5. Take Care of Yourself

Your chances of getting better and getting better quickly are not as good if you do not treat your body well after receiving your diagnosis. Be sure to get the rest your body needs, that you eat well and nutritiously, and that you are following any orders that your doctor may have given you.

After being diagnosed with a rare disease, otherwise maintaining your health to the best of your ability will help you and your chances of regaining a completely clean bill of health.

6. Keep A Positive Mindset

It is not helpful to be unrealistic about whatever matters are at hand, but when diagnosed with a rare disease, you should certainly at least keep a positive mindset.

If you let yourself be overtaken by negativity and bitterness, you will not be able to focus properly on getting yourself back to full health.

After getting the diagnosis of a rare disease, there are certain steps that need to be taken to help you through the process of dealing with it and working to rid yourself of it.

Be sure to put yourself first and gather as much knowledge as you can. Be an informed patient who is ready to take necessary action.

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