Upcoming family reunion Should I explain?

Discussion in 'Fibromyalgia Main Forum' started by kalina, Mar 24, 2006.

  1. kalina

    kalina New Member

    Hey, all! I used to post here a lot, and still poke my head in now and then, but I have not been posting much here for a very long time. My cognitive problems have gotten so bad that it takes me forever to write anything. I have trouble reading too.

    If all goes well, my husband will soon be driving me halfway across Texas to a family reunion with about 25 people. We had these every year when I was a kid, but now it happens rarely. There will be cousins there who I haven't seen since we were teenagers. I'm looking forward to seeing everybody, but at the same time I'm dreading it, if you know what I mean. It will be difficult, but I do have a place to retreat nearby when I need to take a break.

    I just can't hide my illness anymore. What concerns me most is the cognitive problems that make it impossible to have a normal conversation with people (lots of word-finding problems, mangled sentences, losing my train of thought, etc.) I'm very clumsy and my hands and legs shake. I'm white as a sheet from being mostly housebound, and I've lost so much weight that I don't even hear "But you don't LOOK sick" anymore.

    I have such a hard time thinking and communicating -- I usually don't offer an explanation to people i don't know well, but it's so embarrassing! What about family? My immediate family knows I have CFS, but I don't know about my cousins. I really don't think they're judgemental people, but due to past experience I feel like I am being judged when i do try to explain why I look and act differnet now.

    If anyone asks, I can either say something like I have "Chronic Fatigue Syndrome" -- what a pathetic name the CDC has created for us! -- or attempt a longer explanation which I'm sure I couldn't accomplish if I had to. Plus I would feel like a whiner, but avoiding an answer dosn't seem right either.

    Sorry if I'm rambling, but I'm looking for any input on how to deal with this situation. And I'm looking forward to meeting some of the "new" people here!

  2. foggygirl

    foggygirl New Member


    I can really relate to what you are feeling; we all used to be active, productive people before we were slammed with this. I sat down and really analized my feelings on this and realized that I was ashamed of the way I am now--and this made me angry....at myself, mostly. None of us asked for this, nor did we deliberately 'self-inflict' this on ourselves.

    My point is, don't be ashamed of who/what you are. We are the 'warriors' who will eventually push for a cure, and help those coming after us.

    Before this made me quit working, I was talking to one of my clients and was going into a 'brain-fog' and I said to her in a joking manner: "Tammy, honestly, I'm not on drugs or something, (and I smiled) I'm getting over mono and was dx'd with CF/FM...just having trouble concentrating." She was very understanding without showing the dreaded pity. Most people by now have at least heard of this.

    My point is, look them in the eye, joke if you like, but tell them the way it is and don't be ashamed of you, or feel like you are whinning.

    Good luck and have fun at the reunion.

  3. Crispangel66

    Crispangel66 New Member

    The only advice I can really give you is to try and ignore the stares and whispers. If they don't understand don't worry about it. It also may not be a bad idea to find some kind of pamplet about cfs and print about 10 copies of it or however many you think you may need. Then if someone asks you about it and they seem confused when you explain it ask them if they would like more information about your condition and if they say yes give them a pamplet. Good luck to you and I hope things go well, this is family were talking about so they should be understanding.

  4. spmary

    spmary New Member

    Hi Kalina....I'm one of the oldies, in fact I took one of those tests that tell how old you are by what you remember.
    I was older than dirt! So when I go foggy at the wrong time, I say" Excuse me,must have been a senior moment"
    I guess my white hair helps.Anyway, don't be embarressed. It happens to everyone. Aren't you glad to see all these new people with new ideas to help us. Of course I'm sorry they have these DDs. Lets hope for better days and new discoveries. LOL,mary
  5. NyroFan

    NyroFan New Member

    They are family, so for better or worse, I would explain to them. If you need to 'retreat' sometime during the reunion at least they will know why.

    Have a wonderful time.

  6. petesdragon

    petesdragon New Member

    My immune system seems to be attacking me from several different angles. It's true, funny, and the immune system is familiar to everyone. Once I told someone I had every disease the immune system could give me. I did have chronic fatique, fibromyalgia, rheumatoid arthritis, diabetes, allergies etc, etc. They replied "You don't have AIDS do you?" Never said that again.
  7. kalina

    kalina New Member

    Thanks for all the thoughtful replies! It's just nice to know people here understand what I'm trying to say.

    It's hard feeling misunderstood. I know -- I try not to let it bother me what people think, but it's still hard! I wish I could just have a good time catching up with everybody at the reunion, but I don't think my illness will allow it. I'll just have to do my best to briefly explain or joke about it and then move on, and hope my extended family won't take it the wrong way when i suddenly have to leave or am unable to talk.

    Honora, the term "brain fart" is perfect to describe most of my brain malfunctions, and you wouldn't believe how very appropriate it is to use for this family! Fart jokes go back for generations with this group! I think sometimes all we can do is to laugh at ourselves. Oh, that gives me some great ideas! :)

    There were some good suggestions to bring a pamphlet in case somebody does want to know more details. Glad you all reminded me -- I have a few somewhere. Now if I can just find them!

    Again, thanks for the advice! I feel better about it. Have a great week, everybody!

  8. JLH

    JLH New Member

    No, I would not offer the "official" diagnosis. This is because nobody knows what cfs or fms really is. And ... I have found that nobody really CARES to hear the explanation of WHAT it is! People are so wrapped up in their own lives, that they really aren't interested in hearing about other people's illnesses!

    So ... I just say, sorry I'm not feeling too well today, I've been having some medical problems. That's it. Nobody really says much more except maybe "sorry you've not been feeling well."

  9. sues1

    sues1 New Member

    You have a perfect answer there and you are not lying in any way..Words like below in any manner could help....

    Just say I have immunity issues and recently discovered that I have lead poisoning that might be the reason for it.
    I am doing fine and doctoring for it, but the drive here on top of all is sort of taking a toll..it creates a brain fog or whatever you want to call it.....but I am doing fine and working on getting over this....

    But as someone said.....they will be more interested in telling you about their illness and their spouses, children. etc. Also everyone accomplishments they will want to tell you.....listening can go a far way for you.....just enjoy this marvelous time.
  10. HagerTX

    HagerTX New Member

    In advance, I'd try to come up with a sufficient concise explanation of what you have been through (and are going through).

    Maybe just say something simple like "I've been sick with a form of chronic fatigue since 1998, so I'm not as active as I used to be". If they fire off questions, just try to roll with it the best you can. You can always just keep your answers brief if you don't want to talk about it and just ask them questions in return.

    Family reunions can be kind of exhausting trying to concisely explain what has gone on through the years in a timely manner. (our family has reunions every 10-15 years). Our last one in 2002 was fun but lots of reintroductions to people who I hadn't seen in ages and lots of explanations on what I do for a living etc etc.
  11. kalina

    kalina New Member

    It's interesting the different opinions here of how to handle disclosure. It's sad, but I tend to agree that I not everyone is "safe" to deal with, even family.

    I'm sure there will be questions, and I think coming up with a quick but vague description regarding my health problems tucked away in my back pocket is probably a good plan. That way I won't worry about blanking out or saying too much. I've done that before and I wound up regreting it.

    Dealing the the effects ot the illness is hard enough, but being able to count on the people closest to us to understand would make things a whole lot easier. Hopefully someday this will change.