Dealing with chronic or serious illness can be difficult.You can feel like you are all alone in your struggle when the illness is rare.Even rare illnesses can affect thousands of other people, and support networks and other resources are out there.Become an informed advocate, join the community of others in the same boat, and investigate your options for dealing with and addressing a rare illness.
Step 1: You need to get the answers.
Everyone needs help with a rare or serious illness, but you also need to be your own advocate.Become knowledgeable about your condition by asking questions and seeking opinions.It is difficult to cope alone, but it begins with you.It can be difficult to have a rare illness.Co-workers, friends, and even medical professionals may be skeptical or unsupportive if your illness is not made real through diagnosis.If you are dealing with an undetected illness, never give up on your quest for answers.You can find organizations that deal with undiagnosed illnesses.Don't be afraid to seek a second or third opinion if you are diagnosed with an illness.It is easy to miss rare illnesses.Being thorough is not the same as being in denial.
Step 2: There is a supportive community online.
It is possible to argue that the internet has been a lifesaver for people facing rare illnesses, by providing them with information, treatment advice, community support, and hope.People with rare illnesses often become power users of the internet, developing expertise in finding and evaluating information, and networking with others facing the same challenges.As with everything else on the internet, you need to use your best judgement in determining what is legitimate and trustworthy.The links and contacts provided by established organizations like the National Organization for Rare Disorders can be used to start your search.Information about your rare illness can be found in medical or academic journals, government agencies, and recognized healthcare organizations.There are websites that are trying to sell you something.Sometimes it is necessary to take a break from the research.Taking care of yourself requires you to engage in healthy life activities.
Step 3: You can connect with others who are in the same situation.
It is easier to find and connect with rare illness communities on the internet, but you can also find support groups in your area.There are support groups for people with the same rare disorder as you.You will be surprised by how many other people are out there.You will find out quickly that rare doesn't mean you are alone.There are thousands of people going through the same thing as you, even if you don't know anyone with your illness.In the U.S., a rare illness is defined as one that affects less than 200,000 people.30 million Americans have at least one rare illness.February 29th, or "leap day", has been unofficially declared "Rare Disease Day" to raise awareness and funds for rare illnesses.You don't have to wait for one day every four years to get information and support for rare illnesses.
Step 4: As an ongoing process, you should cope with your illness.
The shock of a rare disease diagnosis can unleash a flood of emotions and a wide range of responses.As time goes on, you will need to revise and develop strategies that work for you, as your needs and circumstances change.It's not a start-to-finish task to deal with a rare illness.You get better at doing it when you don't finish it.Prepare for a lot of ups and downs when dealing with a rare illness.Stress reduction techniques like meditation, visualization, yoga, aromatherapy, or just exercising, listening to music or tidying up a bit can help.Journaling can help you cope with your fears.Writing helps you to let go of emotional baggage that may be weighing you down.Try to ignore symptoms you might develop in the future.If you're expecting them, you may be more likely to experience problems if they are a part of your illness.
Step 5: You can lean on people you trust.
There are going to be good and bad days in dealing with rare illness.On the bad days, whether the causes are physical or emotional, rely on family, friends, support groups, professional counselors, and other people you trust to help.You should ask for help when you need it.When you need someone to listen to you, find someone who is willing to be there for you.It's easier to manage your condition if you have social support.It's difficult to cope with yourself and can lead to increased anxiety and depression.This can lead to worse symptoms.Many of the links to helpful resources address getting assistance in dealing with a rare illness.
Step 6: Become an advocate for your illness by becoming an expert.
Dealing with a rare illness requires knowledge.You need to be able to trust the experience and skills of your medical team, but at the same time become an informed advocate for your own care.Legitimate, medically-sound internet resources are a good starting point for learning about your rare illness.The old saying is appropriate when dealing with rare illnesses.Become a champion for raising awareness and funds for the cause.Being involved in improving the lives of people with a rare illness can give you a sense of power and ownership.
Step 7: Look at potential clinical trials.
There are over 200,000 clinical trials on the U.S. National Institutes of Health website.Look at the databases, identify possible trials, and see if you are eligible to participate.You should always seek new treatment options for your rare illness.It doesn't mean you have to sign up for every trial and try every new medication, just make sure you arm yourself with the most up-to-date resources so you can make informed decisions about how to manage your disease.If you've been diagnosed with an illness, it doesn't mean you have to be treated forever.In some cases lifestyle changes and medication can cure an illness.
Step 8: Consider genetic counseling if you need it.
Depending on the nature of your rare disorder, you may be concerned about the possibility of loved ones contracting the illness as well.You can use genetic counseling to make informed life decisions.If you are dealing with the question of whether to have children due to the risk of passing on a severe and/or rare disorder, you should be given as much information as possible.It is a decision that needs to be made with your heart as much as your head, but you can use genetic counseling to influence both of these decision-making zones.
Step 9: Help with financial and insurance issues is needed.
Even if you have health insurance, dealing with a rare illness can be expensive.Insurers may be hesitant to offer adequate financial support for rare conditions, but that doesn't mean you are out of options.It's up to you to be your own advocate.If you are denied adequate coverage, you should contact the insurance company and your state insurance commissioner.You can use a form letter from NORD.If you are facing a rare illness,NORD may be able to help you with your financial difficulties.
Step 10: Expect stress and grief on your part.
If you have a child or other loved one who is dealing with a rare illness, you will be affected by it as well.You will almost certainly be facing a great deal of stress as you experience shock, denial, and other common stages of grief.The person with the actual illness will need to learn how to cope in their own way.Many of the same mechanisms that may help the person with the disease can also be useful for you.Educate yourself about the illness, find support groups, advocate for increased awareness and financing, and take other steps that enable you to accept the reality of the situation while rejecting that you are powerless to do anything about it.
Step 11: You should care for yourself so you can help someone.
People caring for sick loved ones are often stressed out, sleep deprived, and tempted to drink and smoke to relieve their stress.You will not be able to provide the level of care and support you want to give to the person facing the rare illness if your own health fails.Setting aside time for yourself to sleep, exercise, eat healthy, engage in stress-reduction activities, and do things that make you happy is all you have to do.This is a necessary component of providing the best care you can and it is not selfishness or wasted time.Even if the person can't, you can take a break from the illness.Don't feel guilty, use it as an opportunity to get back into the fight with renewed energy and purpose.
Step 12: Speak up for the person and their illness.
Some people can't be their own advocate when it comes to rare illnesses due to their age or severity.You can be a champion for your loved one when this happens.If you become an advocate for other people with rare illnesses, you may not have a loved one who can speak up for them.You have the expertise and experience to use it.Getting involved in a way that could potentially benefit thousands of other people is a good way to cope with a rare illness.