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How Do You Cope?

Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage symptom, treatment, or other challenges?

  1. I often focus on mindfulness and meditation. I try to journal frequently, but I’m terrible about being consistent with it.

    1. Certainly, here are five concise tips for coping with a rare disease:

      Consult a specialist for tailored care and guidance.
      Join support groups to connect with others facing similar challenges.
      Maintain a health journal to track symptoms and treatments.
      Practice stress management techniques for emotional well-being.
      Stay informed about your condition and available resources for assistance.

      1. Thank you for sharing these 5 things that we can do to be proactive in our care. For me, I have found that stress management seems to continually rise to the top of my list. With stress, I often find myself wasting both time and energy, making it harder to practice the rest. It felt good to be reminded that my time spent meditation and journaling is being well spent.

        Smiles and happy wishes,
        Gina Miller,
        RareDisease.net Team Member

    2. Love this

      1. I was recently diagnosed with Addison's Disease and CIDP (Chronic Inflammatory Demyelinating Polyneuritis) I also started having seizures at 58 years of age. I have had to make a lot of changes due to CIDP. I can't turn my head and look behind me. I have to stop, turn around and then look. My balance is awful. I have torn apart my skin in several places and broken my ankle. I believe the Addison's causes excessive bruising which has been a problem with me for years. I just try and notice when I get a bruise or cut. I have had cellulitis twice this year and never before. I'm 69 years old. I have other diagnoses, like insomnia (used to have Narcolepsy) . I try to be as stresss free as possible. I take breaks when I am cleaning or putting things away, which I have never done before. I see an endocrinologist next week and plan to ask a lot of questions.

        1. Hi , wishing you lots of luck and answers to your questions. Please keep in touch and let us know how it goes. - Warmly, Donna (team member)

        2. keep us posted and make sure he answers your questions and takes you seriously. Otherwise find a new one! Good luck and hope you have more wonderful days than icky ones!

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