There are many ways to successfully with a rare disease or illness. Whether you are dealing with the illness or a family member is, there are things you can do that will help you cope with it while keeping your mental and emotional health intact.
The first, and most obvious thing to do is to seek the right medical help. Whether this is a referral from your family doctor, or you find a referral online through a service like XpertDox, the key is to find the right specialist to help you come up with a treatment plan. Once you have the right medical help, you can begin personally dealing with your rare disease.
Remember that dealing with a rare illness does not have an end date. It is a journey and you will not necessarily ‘finish’ the process. There will be many ups and downs while dealing with a stressful situation such as this. When you begin to accept that, you can begin making adjustments and allowing others to support you.
Here are five things you can do to help yourself or a loved one who have a rare disease or disorder:
Finding support is crucial to coping with a rare disease or illness and many forms of support are available. One of the best things you can do is to seek answers. That means asking questions, seeking out opinions, and gaining as much knowledgeable as you can regarding your condition. Learn how to use the depths of the internet to get information. Find medical journals, professionals, and resources where you can become and remain informed about all aspects of your health – mentally, emotionally, and physically.
Likely, you will find quickly that you are not alone. The term “rare” does not have to equal isolated. Support from others can be in the form of online groups, local support groups in the community, or from hospital counselors.
Keep in mind when you are searching for communities and groups to participate with that you need to use your judgment and discernment so that you find a legitimate and trustworthy community. Starting a search with an established organization such as the National Organization for Rare Disorders (NORD). There are links and contacts available there for resources that are proven to be safe and helpful.
Lastly, give priority to medical or academic journals, recognized healthcare organizations and government agencies with your research to net the best results. Always be leery of unsubstantiated claims or website that want to sell you a product or service.
Talk About It
Confiding in close and trusted friends and family members can be a beneficial way to cope. When you need help, ask for it. When you need someone to talk to, find a good listener — someone who is willing to simply be there for you, perhaps a crisis or grief counselor. A spiritual leader can be of great assistance and comfort as well. Whether the causes are physical or emotional, lean on those you care about and who care about you to help see you through.
Writing It Out
Whether you blog or choose to keep a private journal, writing can help you get your feelings out of your mind and soul. Within the global or local writing communities there is a growing number of people who are willing to walk with you through your process and give you support and positive advice when you ask for it. These are likely people who have had similar experiences and want to help others. Take them up on their offers as you sense their trustworthiness.
Writing also helps you to identify, analyze, and let go of emotional “baggage” that may be weighing you down which can be extremely potent means of coping with an illness of any kind. Writing can also help you discern the best resources and procedures for you to take advantage of regarding your health.
Exercise for Physical, Emotional and Emotional Health
Regular exercise in accordance with your doctor’s recommendations or your condition’s potential limitations can help reduce stress you may be experiencing. Indoor exercise can help keep you socialized and not isolated. Along with the benefits of better overall physical well-being, various types of exercise can also be helpful for your spiritual or mental health such as yoga.
Depending on your condition other forms of exercise may include walking or hiking which have all the benefits mentioned above with the added benefit of getting you outdoors. Breathing the fresh air can have thought and lung clearing effects that will help both body and mind. And nature is always good for soul healing.
Prayer or Meditation
For those who practice a religion, prayer or other forms of meditation could be helpful techniques for coping. It will quiet your mind, soothe your emotions and connect you with your Higher Power. If you don’t have a regular place of worship, some hospitals will offer a chapel that is open 24 hours each day that you can access.
Stress reduction techniques like meditation, visualization, yoga, aromatherapy, or listening to music can help with coping.
While having a rare disease can be a personal experience as you are the one coping with it directly, you do not have to do it alone and you can keep stress and loneliness at bay by engaging friends, family, and other community resources. By maintaining physical, mental, spiritual and emotional health, you will find the most beneficial techniques for dealing with a rare illness.