how do I talk to my family about being sick

You sound so much like me. Only I didnt have GBS…it’s always been CIDP.

I have many days that I feel better …never “good” like I used to…but better and able to do more. Even on a bad day tho, I often act as if I’m ok b/c still after nearly 3 years, I coming to terms with acceptance. I dont like my family to know that I’m weak or not well b/c I dont want them to worry and I also dont want to admit it. It’s still very hard for me to ask for help or to just say, “you do the dishes tonite, I just cant stand up anymore…my feet feel like I’m stepping on broken glass”. I hate having to be less.

I, too, work 40 hours per week. I have a husband and almost 7 yr old son, and a 12 yr old step daughter that is here every other weekend and every Wednesday. We have a big home with lots of rooms to take care of and clean. I plant flowers in the yard…48 this year to be exact. I take my son to the pool every chance I get and also take him every where a boy his age likes to go when possible. I cook, clean, do laundry, grocery shop, and am a wife and mother with a full time job….it’s HARD.

My husband helps alot…without his help, much would go undone and some things still do.

Before I was diagnosed I was active…went to the YMCA…there was a time I went to the gym five days a week. I loved playing raquetball, even tho I”m not good at it and I longed for the day that I’d teach my stepdaughter to rollerskate. Now there is no way I could skate not to mention doing an aerobics class.

My family understands that I am “sick” in spurts. It seems like around the time for IVIG that they ask more how I’m doing. My husband used to always tell me not to worry about things and to rest. My problem is I cant. I cant give in…or maybe it’s not giving in. It could be that I cant accept that I cant ? He’s kinda started to stop saying it.

Before I start rambling, I’ll just say that I think our families, no matter how hard they try, how much they read-dont understand b/c they dont walk in our shoes. They dont know the struggle to get out of bed every morning or the pain that comes from the zaps and zings , or the burning that feels like true fire, or the extreme sensitivity on our feet that makes us feel like we’re walking on broken glass. They also dont know the struggle it is to walk or to feel unsteady on things such as an escalator or with our eyes closed.

I’m tired all of the time…every minute of every day. I dont know how to make them understand it’s different for me…it’s not a matter of a nap, b/c when I wake up, I’ll be just as tired as I was before.

Because we look fine…and because for me personally, I dont like to complain…I think it’s VERY hard for them to understand. Sometimes I wonder, too, if it’s a bit of denial for them also.

I’m quite interested in others’ responses.

I can only advise that you have them read up on CIDP…maybe show some of the posts here. I’ve done that. I’ve shared many posts and I’m pretty sure the ones I share are ones that , if even only for a minute, bring the reality of all this home.

Good luck Tara…

Stacey

Tara (and Stacy),

My heart goes out to you. I know when I was younger and still had family in the house I was expected to be wonder woman – work, clean, nurture, check homework, cook, do laundry, etc, etc.

I’m older now and live by myself. I was diagnosed last year with CIDP and what I [U]finally[/U] learned was how to say no. My mother is bi-polar, suffers from strokes and TIAs and is very needy. And I was her primary care giver as my brother works out of country and my sister is in a different state. I could barely hold on – was working only 20 hrs/week and had trouble doing that – and in bed in pain the rest of the time. Yet the demands kept coming. So I learned how to say no.

It’s difficult for folks without this illness to understand no matter how much they love and care about you. I always get the “but you look so good – how can you be sick?” But when I started saying no, my family finally paid attention. My sister told me she could not remember the last time when I said no to family – but had heard me say no several times in one month and that really got her attention. My mother now lives near my sister and that demand/expectation is removed.

I believe you should pick what you do very carefully and learn to say no to your family or just to leave some things undone. Think of it this way – each day you wake up with a water bottle filled with your energy for that day. If you do more strenuous things (like scrub a bathtub), the water bottle empties faster. If you have high stress (like my mom’s assisted living home calling at 2:00 am because Mom is insisting on …), the water bottle empties faster. The most difficult thing I had to figure out was how to ultilze my limited energy so that I did what absolutely had to be done but also so that I found some pleasure each day. I had to redefine my priorities and decided some things could either be done by others or simply left undone (Christmas cards didn’t get sent last year … oh well!). But I am back working full-time.

Maybe you could establish boundaries around the expectations you place on yourself. Then maybe have a family pow-wow and be very honest about the things you are letting go and explain that some days the water bottle is fuller than other days but that you will be open and honest about which kind of day you are having and your expectation is that they will give you total support on the days your water bottle is low or empty.

It took me to be almost 60 and to get sick before I learned how to place boundaries with my family. And I hope and pray your family, even if they can’t ever completely understand, will be accepting of and sensitive to your limitations.

tara,

In your case it should be easy. Tell them CIDP is long-term chronic GBS. Tell them that GBS is very swift and acute, while CIDP is much less acute, but has long-lasting implications. Tell them that 95% of people with GBS make a fairly complete recovery, but 95% of CIDP patients deal with it for a very long time.

Plus all the stuff everyone else said as well.

Good luck
Dick S

Hi Tara,

You’ve received great advice. Hopefully your family will understand that some days you can’t do as much as you did the previous, etc.

It can be a difficult undertaking and you’ll probably always get the “you don’t look sick” comment. When that occurs, I usually plaster on the fake smile until I can remove myself from their presence. 😉

I fall into that unfortunate category where my family and a number of friends didn’t understand. I’ve finally reached the point where I’m not (as) bitter about their lack of understanding and compassion, mainly because I’ve made new friends who understand my issues and don’t think I’m faking or lazy.

Take care,

Tina

If you are able to talk with your wife, perhaps she will be able to let others know what you have and you will not get any questioning looks in return. I would star with whomever you feel you could comfortably talk with in your family and who would believe what you have to say. Tell them exactly what CIDP is..explain about the damaged sheath, etc…

That’s what I would do anyway…

Wish you the best of luck with it.

If you are able to talk with your spouse, perhaps she will be able to let others know what you have and you will not get any questioning looks in return. I would choose whomever you feel you could comfortably talk with in your family and who would believe what you have to say. Tell them exactly what CIDP is..explain about the damaged sheath, etc…

That’s what I would do anyway…

Wish you the best of luck with it.

CIDP is an invisible disease. Some folks will never understand. They may see you with washed hair, clean clothes and a smile. They don’t see how hard it was to take a shower, hold your arms up to wash your hair or how tiring it was to towel off. Then you got slowly dressed and brushed your teeth while sitting on the bed.OMG if you put on earrings or a brightly colored piece of clothing forget it.
I have found so many people “don’t get it”-this illness is not a key word like cancer, stroke or heart attack. If you’re not using a cane, walker or wheelchair it’s even harder without one of those for visual reference.
You can only do so much. Sometimes unexpectedly has an acquaintance understood and helped. I have dear friends who just will not get it.I find myself wanting to defend really being sick but don’t.
Fatigue is overwhelming and it comes out of nowhere. Then the next day I can surprisingly do much more but end up paying for it.

Connors mom and Linda both expressed very well how it was with family.
Yes, denial looms largely.Take care of yourself and rest.

[FONT=”Georgia”]I like Dick’s comment. I’ve used that comparison myself.

And the last paragraph of Tina’s. New friends. Absolutely!

Rocky[/FONT]

Hang in there! We are all going through the same thing. I have had people doubt my disease or that I am actually sick. It is a curse looking so good even though I am sick…but I won’t complain about that part! 😉

It is amazing that sometimes no matter how much you tell someone or explain the disease to them, they just don’t get it. I have some family and coworkers that just aren’t buying it. Then there are the true family and friends that once they get their head around it, are more amazing than ever. Hang in there and keep telling them until they understand it. If they don’t then don’t waste your energy on them. Move on to more supportive people since you deserve it right now.

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