Family/Friends
 

I'm pretty sure this topic has come up before, but I am getting really fed up with some of my relatives. One in particular (my cousin, who is the same age as me and has just graduated from college and is going to be teaching in the fall) has decided I exaggerate everything, and my issues are not really very bad, and I should stop being so overly dramatic. :mad: I am wondering how anyone else managed to talk to their friends/relatives and got them to understand that the pain/issues are real, and that even if you don't look sick, you still are in pain and doing things is difficult. She just doesn't seem to get it, and I don't know what to say to her anymore.

I just stay persistant, and hold my ground. Yes, I have come up against this in my family. For years, before I knew what was going on with me, I would have aches and pains, my mom would say, "You are too young to complain so much!" Then later, she would say, "You come by this naturally in this family, it happens, because it can!"

When my sister was diagnosed with celiac disease, I had no insurance, no money, so she talked me into going gluten free too.:DI had my life back again, and I lost 60#. Then, within 3 years, I was sick again, a soy intolerance. Over the next few years, many intolerance's reared their ugly heads...corn, nightshades, cruciferous veggies, rice, and most recently, a problem with dairy. I have been gluten free now for 8 years. I was in Michigan on vacation, my mom was making potato salad. I had told her I can't eat potatoes anymore and I thought she understood. Yet while she is cutting up the potatoes for potato salad, she shows me a dish with plain potatoes in it for me. I told her to go ahead and cut them up for her salad, cause I can't eat them. She had a fit, "There is nothing wrong with potatoes, you have got to get this out of your head and return to eating them, THEY ARE NOT GLUTEN!" To hold my temper, I walked outside, and needless to say, I did not eat the potatoes. Later, she was telling my brother about the potato discussion, I walked in and he says, "I have a present for you in the truck, it's a 50# bag of potatoes." I was so hurt, but, sometimes, you have to realize, ignorance is everywhere, and ignorance breeds ignorance sometimes.

That was 2 years ago. Last summer when I vacationed in Michigan, I took my own pan with me. I am so intolerant to so many things. Even little things like meat cooked with seasoned salt will effect me if I use the same pan in a few days, so I take my own, just to be safe. If this offends my family, then I understand, it's their problem, not mine. If I do not take care of me, who will?

We do not invent these problems, yet we do have to live with them. I refuse to eat something that will make me sick, just so another doesn't get hurt feelings. A tiny bite of one of my intolerance's will make me ill for at least 3 weeks, I do not need to deal with it.

I have a gluten intolerance/with so many other intolerance's, sensory neuropathy, sleep apnea, insomnia, arthritis, chronic fatigue, and deal with headaches every single day of my life. I want to a "normal" person too. I would much prefer to not have any of these issues.

You need to worry about you, not the cousin. If you want to talk to her, talk about other things, don't even mention your problems. It's not worth upsetting yourself over.:hug:

I can relate to this and for me I try to just focus on the good supports I do have and the ones who stay stupid things that they don't understand. I try to educate them but after a point it does no good. For ex when I went to Fl I was yelled at and told I would never be better by my gramps and his gf because I don't do yoga which I can't at this time. I said that and then asked them what I suffer from and they still after 2 years had no idea. Or I am blamed for why I have this.Anyhow my mom though on another note always points on my strengths and how I have made progress so I try to focus on that. I am sorry you and others face the same. I wish people who were clueless would just not add their 2 cents. Really the best thing I think is to just call and say hi and a check in not to preach.

Other people can be a problem. This is why the internet is so valuable for support.

I have been on various healthboards reading for a decade now.
Intolerance of family and friends is a very common thing.

I have found in my life many psychological reasons for this unacceptance of illness by family members.

1) All humans share a trait which is thought to be genetic (ethnobiologists think so), called xenophobia. This is fear of someone different from you. Lower animals express this, as driving out the ill member, to keep it away from the "pack" or "herd". We do it psychologically. Xenophobia is what drives racism as well. We can see this when little kids stare at people on crutches, in wheelchairs, and ask blatantly "What's wrong with you" ? When I was using a cane for a while, and was called to jury duty...I was excused from every selection for a trial. (previously I had served on a trial earlier when I had no cane). I think the cane somehow told the attorneys for the defense that I was a "problem"...it sure felt that way...as they stared at me!

2) Families can be competitive... sibling type rivalry for assests, attention, love etc. Being "ill" may make some family members think the ill person will then accrue more attention, money, etc.

3) Also people have a huge propensity for projection. That is they project their nasty traits onto others. I have worked with the public for over 40+yrs. It has been MY experience when I am called a racist (in mixed neighborhoods with tension), it is the other person who is the racist. I recall clearly one vocal person with bad manners attacking my colleague this way, and my colleague had been married to the same ethnic group as the bad mannered guy slinging the insults! Another example is when people out and out call you a LIAR, when you are telling the truth. These types I have found are really the liars! I had a neighbor do this to my son who was bitten by her dog while she was at the grocery. When he told her when she returned, what happened, she carefully explained that he should not lie about things like this. (her husband got so embarrassed, and took her in the house, and told her--as he was right there). My son was devastated by this response from her. This changed our whole neighbor relationship. I could now see where SHE came from. I could never trust her again. And another example is the cheater... it is fairly common in my job for people to empty their RX bottles and put another drug in them, bring them back and demand a refund! The most obvious one to me was a woman who put OTC FiberCon tablets in her Seldane bottle! She was irate and accused us of trying to CHEAT her...when in reality she was the cheat! (this was only one type of scam I had to endure on a daily basis).

4) Also we can't forget empathy. People who don't have this capacity cannot understand how other people feel. So they assume the person in pain is a faker. (because they fake alot themselves).

So when I hear stories about people getting accused of hypochondria, or faking their pain, I have to consider that the person delivering these comments has A PROBLEM!

For myself, I do not really discuss my problems with my son or friends. If they ask, I'll tell them a bit, but I just DON'T share. In fact I don't even share much here either..I am so used to keeping that private!
My husband understands, and that is enough for me. I think the internet is a good place to get support for problems like this.
We are lucky to have this venue with many choices where people can come together and share experiences and anxieties.
That's what I think.

Illness
 

Well said Mrs D....

I think you are dead on with your points mentioned, and i think the most telling one is FEAR - people are afraid it may happen to them - they are afraid of the unknown, the different..... I've met people who thought they were going to catch PN.....

My fam is completely unsupportive - useless - to me during this battle - the sicker I'be become they worse they are.... its easier for them to pretend all is well with me, the everyday issues others take for granted just like getting rides to appts, etc are not available from them ...they think they should not have to nor will deal with this...... they dont want their worlds disturbed...

I think fam is the toughest to get past for us is that the people we expect first to help us may be the last that are there for any emtional or physical help as we expect them too - and its necessary for our own sanity to accept this .... I expect nothing at this point from fam - they are always too "BUSY" to do a thing or even drop by... and are not going to change - and as the disease progression and becomes more obvious, the weight loss, the wheel chair, etc.... just scares them more. I think as patients we need to realize that the people we expect help from first in such situations are sometimes completely incapable of providing it at all.

Empathy is also a very important trait that many dont seem to possess at all any more.... maybe because the world, while getting bigger overall - is getting so small for those growing up in it - and until something happens directly to an individual when they need to depend on the kindness of others - have no capacity to understand.....

My friends have almost all moved way out of the area - but when I do see them they are very caring and helpful - but this is not often at all as they live all over the map - having them drop by for visits when they do come to town is wonderful, and no, we dont talk about my illness for most part - its pretty obvious with one look at me - and I know they would be helping out more if they were in the area - but again, physical proximity is essential for some things!

I've learned to reach out to others in the community, volunteer groups, etc.. who are caring empathtic people... these people are special... and as far as family goes, expect nothing along the lines of any type of support - wishing otherwise is just frustration... Being ill we have limited emotional and physical strength to start with, and wasting it on people arent going to change is well, a waste.... and detrimental to us....



:(

I think I have to agree with your points... I just have trouble thinking that way about my cousin as we basically grew up together... our relationship is more like sisters for the most part- or it was until this. Now she yells/scolds me about this, but all in the name of "being worried about me". Especially because I can't do as much as I used to, and am stuck inside the house more than a normal 22yr old... she thinks this is harming me in some way...either psychologically or socially, but doesn't seem to care about my physical problems... I do see your meaning about empathy... I was always the one of us who was able to be empathetic to others, she always had issues expressing the way she felt about others pain (emotional/physical)
Maybe I should be more empathetic to her lack of empathy?

The kicker is I never really talked to her about my health...(I discuss it very little with most people as I sometimes feel thinking about it to talk about it brings the pain more to the front of my mind- however, when the pain gets too much to bear I would mention it to my mom, aunt or grandmother, all who live with me and are very empathetic.-I do discuss it on here as well, and everyone on here is super!) I never bring it up when I see her (she is the one who does). So maybe this is her misguided attempt at trying to be empathetic?

Don't talk.....
 

...I seldom bring up my neuropathy with family or friends. Just my husband and son. They were with me 20 years ago when I contracted viral sensory peripheral neuropathy. My husband especially is such a comfort, and my son can tell when pain strikes without me saying a word.

If I have a question about my care I do talk to one sister, a nurse. Other then that I hardly ever see my family.....they all live across the country; we talk a lot on the phone, but I always keep things light and happy. It does make it a lot simpler for me.......and when we do get together I tend to sit quietly and just focus on enjoying their company......it just makes it all so much easier......no excuses, no complaints.... It is what it is........

It does, doesn't it... which is why I find it weird that she would go out of her way to seek out the issue in such a manner...

You forgot the... "I'm worse off/sicker/in more pain....than you are"
The one who totally discounts and rejects your problem and goes on & on... about their own medical issues.