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I wish others knew that...

What is one thing you wish more people knew about living with a rare disease?

  1. Living with vasculitis is emotionally draining.

    1. Hi. I just took a moment to read up on vasculitis. I can understand how the ongoing inflammatory situation and accompanying unpredictability of flares with this chronic rare disease causes emotional distress, especially with navigating social events. I hope you are finding some new ideas in others; comments here to help along these lines.

      PS: I noticed you aren't yet using a chosen name here... if you'd like to change it, you can do so by clicking the icon in upper right corner of page...& choose "Account Settings" to change your profile.

      Smiles your way,
      Gina Miller, Team Member

  2. How difficult it is to explain to others the stress-related feeling when others don't understand that physical therapy or exercise are not always the right approach with every condition. That's when education is key to help the affected individual.

    1. Hi. You're comment highlights the reality that those of us with conditions that don't improve with 'simply' adding in more exercise or physical therapies do face thus particular stressor when others cannot grasp it intuitively ... so, yes! ...we then need to educate our friends and family that our bodies don't necessarily function the way an average person's body is predicted to. In fact, sometimes additional exercise or even physical therapies can actually make matters worse, depending on the illness.

      Your comment that education is required is so fully advocate for ourselves, we must find & consciously use tools to deal with this stressor, too. In barnstorming a few right now that I have tried, I can think of FB posts/shares I have posted and a few group texts I have sent...but, maybe there's additional ways to educate others?

      Thank you for raising this issue... it bought more fodder for me to grow more self-compassion at a minimum.
      Gina Miller ( Team Member)

  3. Not wanting to constantly feel the way we do. It makes life really hard. Living with an unpredictable disease is exhausting. We are also sorry if we complain but it literally consumes our every decision. We want to live a normal life.

    1. It really is a cross we bear... and I, also, wish others knew that I carry the weight of not knowing how my health journey will go, day-to-day... even with a powerful CF med onboard now, it is far from perfect and comes with unpredictable side effects I must namage.

      It's an ongoing grieving process to let go of the dream of being normal...of leading 'a normal life.' There are days where stopping to give myself a lot of compassion and grace...and rest... are required.

      THANK YOU for sharing... it helped me reflect more on my situation, too...

      Gina Miller, Team Member

  4. It is very difficult physically and mentally to cope at times. I'm lonely and feel horrible mom guilt when I have to tell my daughter no after I promised her already and some days just walking to the bathroom is all my body can do.

    1. That some days, being alive is painful and exhausting, on every level; nobody chooses to live this way. There IS no choice, other than to adapt as best we can, learn to read the cues that our body gives us, and try to judge for ourselves when we can and cannot participate. It's not for others to understand WHY we can't. "I'm sorry, I wish that I could", "I don't feel up to that", or a flat "no", should be enough, without needing to justify ourselves.

    2. I second your message here!
      NO EXPLANATIONS should be required.
      If someone is pushing me and acts as if I must satisfy their desire to feel I am as tried as I say I am, I will now simply be a broken record on this...and simply repeat myself.

      THANK YOU for pointing this one out, I benefitted from reading your comment and feel others will, too.

      Gina Miller, Team Member

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