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Invisible Illness

What aspects of your rare disease are invisible to others?

  1. My daily struggle with fatigue and muscle weak ess has been an ongoing invisible struggle. Most people don't understand my disorder and frankly some people are unsympathetic to the problems in causes.

    1. I would say that fatigue is the hardest part of my life and not being believed that I'm exhausted and in pain. I'm not lazy, I am just trying to survive. I had guillian barre syndrome and I have congestive heart failure. Nerve damage.

      1. Thank you so much for sharing your personal experience of living with invisible illnesses. It sure takes a lot of self-compassion to deal with the judgements that can come our way!

        Wishing you the best as you continue along your healthcare journey,
        Gina Miller,
        RareDisease.net Team Member

    2. I have hEDS, EPI, and now alpha-gal. I struggle to maintain weight, so am slender. People tell me that I look great, they wish they could not be able to eat.....tachycatdia symptoms have improved, and getting on alpha-gal restrictions maybe helping.....ugh!

      1. Hi ,

        Thank you so much for sharing here.

        I totally understand feeling some angst when others who cannot see your illnesses make comments like "you should be happy about being so thin." It's happened to me via both MAC Lung Disease burning calories from increased metabolism with fighting infection, and cystic fibrosis that causes absorption problems, not to mention Celiac Disease fallout.

        I'm glad you are seeing some improvements in your symptoms and wish you all the best as you journey forward!

        Take good care.

        Gina Miller,
        RareDisease.net Team Member


    3. That if I get too stressed, I can have an Allergic Reaction, maybe even Anaphylaxis! I have a working diagnosis for Mast Cell Activation Syndrome.

      1. , that is awful - in this day and age, stress is everyone's bedfellow! How do you keep yourself calm to avoid the terrible consequences? - Warmly, Donna (team member)

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