Family, friends, guilt and rare disease

Sure most days I look like I’m OK – some days I even look better than that.  Some days I look like hell.  Rare disease is hiding in plain sight.

How do you handle it when your friends – or even family don’t get it? Do you walk away consumed by guilt? Because that seems to be the most commonly felt emotion when having to cancel plans, disappoint loved ones, not have enough energy to make dinner. Fill in the blanks.




If we are told that we look fine- we often think it’s our fault that we’re sick or in pain.  Overcome with guilt- always failing those we care about; embarrassed we’re not living up to expectations – convincing ourselves that we’ve let them down. Some of these feelings are self-inflicted- other times- we can be beat down by that one comment from a beloved family member- a friend we had to cancel plans with last minute.  I know I experience an extreme amount of angst when I have to cancel, change plans, let someone down – let myself down. Coming to grips with the reality of this life with illness is often not good for the soul. The path not taken often consumes me.  As a high achiever – I continue to see myself as an able bodied and quick minded person who can do anything – as long as I set my mind to it – just like Mom taught me to do. EXCEPT – I CAN’T.  I’m not that same person- and I grieve.

Just this week- I was thinking maybe I’ll wear a dress to granddaughters graduations.   I got really excited thinking it would be fun to dress nicely and look good. Then reality set in.  In order to try the dress on – first I have to remove my roll bar special shoes- and then the brace that keeps my ankle and foot where they belong. Then, off comes the arm and wrist brace. Now, I’m in the fitting room and after trying 3 things on – I’m worn out, my hips hurt and I can barely make it to the car. So I guess I’ll order pants that will hide my brace and forget about that cute dress. REALITY! and sadness.

Here is what I want to know- HOW DO YOU HANDLE FAMILY, FRIENDS and GUILT? I think this is something we are struggling with –  and we can help each other with ideas, techniques, whatever works.

If it’s OK if I use your name – just write OK next to your comments. If you want to remain anonymous- please say NO NAME.


Regarding this last pic- I have to rest OFTEN after showering!

please let your voice be heard.

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  • Lisa Churinskas-Hulit Posted March 7, 2018 9:27 pm

    The shower thing – YES!!! I have elderly parents, and I am their primary source for transportation to medical appointments and other things. I can’t work, so that makes me “available” to do these things. I don’t mind, and if I just can’t do it one day, then we reschedule. However, when I do it, it takes planning and hours to get ready. Since I don’t often get out, I use these occassions to put on makeup, dress nicely, do my hair, etc. So when people see me, I look healthy. They just don’t know that to get to that point, I have to wake up about 5 hours beforehand to ease into the day, wait for my meds to kick in, rest after showering – the whole drill. Once I am out, I have about 4 hours before I become so exhausted that I have to get home and rest again.

    • mm
      Carol Miletti Posted March 10, 2018 1:56 am

      Lisa, I know that feeling all too well. May I use some of your comments – with either 1st name or anonymous?

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