Are you alone in your family in having a rare disease? If not, can you use your awareness to help them?

Both my daughters, one of them adopted, have rare conditions. At least I know that these diseases exist and I can sympathise with the difficulty in getting a diagnosis. Should it make it easier for me to understand their problems? Sometimes I think my own daily struggle leaves me with little energy to do so.

While no one else in my family has N, we all are affected by a spectrum of brain issues from ADHD (rampant - I can't think of anyone, including myself, who doesn't have this) to mild autism, bipolar issues, a variety of learning disabilities, and schizophrenia. You might think that serious challenges to a person's life would make that person understanding of others' problems - it's not that people in my family don't care or have compassion for me or anyone else with serious physical issues, it's that they also are exhausted sometimes coping with their own challenges.

When someone asks how I am, I'm honest with them. My answer that not much has changed tends to surprise them, but I don't sugar-coat the truth. One gift of feeling the way I do physically is that I don't have the energy to be concerned about what they think of me.

I understand exactly what you wrote Tessa.
I should really have said a ‘rare and invisible’ disease as the invisibility is what causes most of us to have to suffer in silence. I have had my neurological condition for 4 years in which time family members, though not unkind, are clearly bewildered and I have been asked more than once, “Oh do you still have that?” as though it is time limited. Strangers can have no idea from looking at me that I am not just a rather tired person and no-one treats me with extra care.
7 months ago I broke my leg very badly and walking is still painfully difficult and with a crutch. People hold the bus for me, run ahead to open doors, always offer me a seat and couldn’t be kinder. Members of the family are sympathetic and helpful. It was an interesting discovery that people need physical signs and are not thoughtless. Of course if we or they are ourselves battling with our own demons we are perhaps less rather than more likely to have anything left to give.
I hope you are all having a good weekend

Yes, the "invisible disease" aspect of N has been difficult. If I just looked more sick, people would understand. When I've been able to participate in an activity I've usually had to pass up, people often comment, with great hope and good will for me, that I must be cured. Everyone means well, and as you said, and they do not intend to be insensitive. One of my own family pronounced that "when I'm finished with needing this illness, I'll be healed." It's a good thing I love this person. (Said with a big grin) Bottom line, people want us to be well because they love us, might be fearful that whatever is the matter with us is contagious, and some just don't want to have a reminder of their own fragility around them. I've had to develop strong emotional boundaries - their attitudes are theirs and have nothing to do with who I am.

Yes! I am adopted and it is an almost constant battle with my family. I don't even want to get into the laundry list of rare conditions I am dealing with, but Nel you understand where I am coming from on that. Sometimes, I just stop talking about things. I don't offer information anymore about what goes on at my appointments or how I am feeling. I don't even mention if I have been in ER and don't mention my upcoming appointments unless I need help with transportation. I've even made other plans for someone to be with me in surgery.

Hi Kristin,
I’m sorry about the constant battling! Oddly enough I probably talk more to my adopted daughter about my difficulties than to my other offspring, perhaps because we have gone through a lot together. My great sorrow is that she lives so far away and we cannot actually physically help each other any more.
What we say here is that ‘there’s nowt so queer as folks’! There are people who when they can’t understand just don’t want to know and perhaps simply withdrawing is your best way to go, sad though it is. Good luck with the coming surgery.

I have narcolepsy and other health conditions that limit my energy. I recently helped a family member with depression, and it’s special because I felt good about telling my cousin that she has a connection in the family, knowing it’s hard to feel bad and alone at the same time. It was a milestone for me to feel confident she could count on me for a phone call or a card in the mail. When she was in town last month I met her.

After feeling isolated by illness I’d say if I’m very careful I can choose to be supportive of others within the limits of what I can do. My immediate family has no rare disorders that prevent them from working but they have zero time, so we support each other, or not, by keeping in touch minimally by e-mail.