How to Deal with Relatives

[zoe.a.m.]

Thank you silicon and camas (serenity and ggingues too). Knowing that some people out there think that this isn't normal or acceptable helps. It really does. It's helping me to focus on getting angry at being treated this way, which is hard to do when I'm overwhelmed with the "how's" of all the things I need to find answers for. Unfortunately, anger doesn't trump real and basic needs--though some way has to exist. I've come to the conclusion that we all need someone who wants us to be as well as we can be and to whom it really matters; operating in a vacuum doesn't work. I don't want my story to be like this, and I think that's true for just about everyone here. This place and everybody here helps though, and that's a lot.

 

[Mya Symons]

Zoe, I am sorry for what you are having to go through. I also do not think you are taking anything too personally. It is totally understandable that you would be upset that your family is moving away, especially when you have a disability hearing soon. You are not being Narcissistic. It is so sad that there is so little understanding and so much prejudice that goes with this disease, especially when it comes from our family.

 

[Victoria]

I suspect not being believed or supported is why many CFS/FM sufferers get isolated & lonely.

I think it's better to distance yourself from negative & disbelieving people (family, friends or work colleagues) - they bring you down emotionally & mentally. And inevitably, this affects your physical symptoms as well.

Life, in some ways, is easier if you're on your own.

Difficult - certainly.

Impossible - sometimes.

But at least you know, you're genuinely ill, & don't have to waste energy explaining or begging for help.

The only people who REALLY understand chronic pain & fatigue are people who have some chronic invisible illness themselves.

The other thing you can do (if you feel you can handle it) is to tell people you have Rheumatoid Arthritis in every joint in your body. In other words, lie. Tell people you have some serious, debilitating disease that they know about & can understand.

Most healthy people have no concept of what it is like day in, day out, month after month, year after year to be so disabled. Healthy people can only relate to a couple of nights without sleep, or a migraine for 3 days or a week in bed with the flu (type of experience).

That is the limit of their understanding on what "chronic" means.

So, despite that craving for understanding, sympathy & help, I'm afraid sometimes it's better to just divorce family and friends.

 

[zoe.a.m.]

Everything about your post rings true Victoria. Where on earth do you guys find the other chronically ill folks at (in person)? Lying is distressing, but I did begin telling those who needed an explanation that I had atypical MS as my doctor is still convinced it is MS and that CFS can't be this bad, though she seems to be coming around. Sometimes the disbelief of CFS is a good thing, like when I could fill out insurance paperwork two years after being ill and get accepted because no one would officially diagnose me with anything and only, literally, whispered "CFS."

I just lost out on a GI referral (finally went through yesterday; I've been waiting 2 yrs. for a doctor who would see me and do the right tests!) and couldn't take the appt. b/c of no transportation and haven't found a program that can help me get there.

To add to that, I got an email from my sister (who cut me off because I wouldn't follow the GAPS diet) saying that she's spending the weekend in town with my parents. It's really something that they all are taking care of each other at this difficult time (sorry for the irony, but that is the behavior, and it's so backwards it makes me lose my breath a little).

Yesterday was a little better and today I just got the knife twisted again, just for looking at my inbox. How do you divorce your family as an adult while you wait for SSD? The only option I could find was a group home for people with mental illness, which wouldn't go over well with my central nervous system being at a 10 on the reactivity scale (been like that a few months).

I do hope I'm not bringing anyone down, honestly.

 

[serenity]

no Zoe, you are not bringing us down - we are here to help. a lot of what Victoria says is probably true, tho i know it's very hard.
i got rid of many friends who didn't believe me & i honestly do feel better now, not having to deal with them. but then there is the lonliness - i am lucky to have my husband.
i know that "started out a good day then i got the knife twiseted again by an email" feeling. i really did do my best to get rid of the knife twisters.
it is true that most of my friends now have something - bone spurs in their neck, interstitial cystits, etc. i am not sure how i found them, fate just sort of led me there. i had to let go of the bad folks first, & stop spending all my time on them. then, i started to realize who was better for me.
your situation is tough, & i wish i had more advice. but we are here for support.

 

[Mya Symons]

Can you do the exercise testing at Pacific Fatigue lab to show disabled you are?

ggingues, I used to go to a support group when I lived in the Seattle area, but I currently live in a small town and there are none. I have not heard of exercise testing. Can you tell me where the Pacific Fatigue lab is?

Zoe, do you live in a big enough town that you could go to an in person support group for CFS?

 

[taniaaust1]

Hi, Im basically by myself with this to as far as my family is concerned. I get even left out of the family dos and birthdays as no one wants to pick me up to take me and im unsafe to drive (my cars ended up smashed up far to much). They usualy dont even invite me anymore and if i find out, Im told they feel too lazy to pick me up so I can go.

My nanna who was like a mother to me (she was the emotionally closest family member i had), she's got fibromyalgia. I used to be there for her so much.. and spend so much time over many many years just listening to her constant gripes about it but when i got sick, she didnt even want to hear about it. It emotionally hurt.

To top that off cause I have CFS/ME, she tells me just to "go and exercise and you will be right". Even when one day when she convinced me (so wouldnt listen to my cants, Im too sick).. to take her to the shopping centre complex when i was not good enough to go... so I ended up collapsing almost unconscious on shopping centre floor unable to even speak whole body almost seizuring, with everyone wanting to ring an ambulance. A guy from a chemist picked me up and carried me to a quiet private place in the back of the chemist where I ended up recovered enough to speak again. Even that didnt convince her.. with her just saying the next day "You must be far worst then normal".... in fact I was at the time how i usually was and put in a HUGE EFFORT just to visit her in the first place.

I very very rarely see my nanna nowdays.. well i cant anyway cause I cant get there but Id cut seeing her right back before that as her remarks hurt. I've tried to educate her by taking articles to her which she never then wanted to look at. So I then took a CFS DVD to her... which just sat for 2 mths unwatched so i gave up and took it back.

Its kind of irronic as another family member has CFS like me (she's in a different Australian state... on disability too).. but she and her immediate family refuses to think that her illness is CFS and now my sister may have CFS too (im not sure yet).. she's been sick for a year...she's refusing to think it could be CFS.

All you can really do is stay away from family members who drain your energy and hurt you. I really keep to myself (thou i would love to be able to get to the occassional family birthday party)

 

[Mya Symons]

My nanna who was like a mother to me (she was the emotionally closest family member i had), she's got fibromyalgia. I used to be there for her so much.. and spend so much time over many many years just listening to her constant gripes about it but when i got sick, she didnt even want to hear about it. It emotionally hurt.

Tania, I have both Fibromyalgia and CFS. I can't imagine why anyone would think that Fibro is more of a disease than CFS and feels justified in judging you. It does not make sense. I know everyone is different, but from my experience the CFS has done more harm. I can work and have a social life through the pain, but I cannot when I am fatigued. Also, there is medication for the pain, but nothing for the fatigue (at least nothing anyone is willing to prescribe). Not to mention all of the other issues with infections, blood pressure, fever, lymph nodes etc.

It is also so frustrating and hurtful when you are more than willing to be there for a person and they are not for you. I seem to have that issue with friends often. I am so sorry you have to go through that with your family.

 

[judderwocky]

Tania, I have both Fibromyalgia and CFS. I can't imagine why anyone would think that Fibro is more of a disease than CFS and feels justified in judging you. It does not make sense. I know everyone is different, but from my experience the CFS has done more harm. I can work and have a social life through the pain, but I cannot when I am fatigued. Also, there is medication for the pain, but nothing for the fatigue (at least nothing anyone is willing to prescribe). Not to mention all of the other issues with infections, blood pressure, fever, lymph nodes etc.

It is also so frustrating and hurtful when you are more than willing to be there for a person and they are not for you. I seem to have that issue with friends often. I am so sorry you have to go through that with your family.

I can't even tell the two apart... everythin hurts when im tired... and im tired when everything hurts lol... why split hairs?

 

[alex3619]

Hi Mya, Zoe,

There is another option for support. Log on to Second Life and attend one of three virtual support groups per week. As the service gets larger I suspect they will have to schedule even more meetings, at alternate sites, because Second LIfe can't handle lots of people at once, but there is support there if you are house bound. The ME/CFS centre is supported by Murdoch University in Western Australia, and has its own virtual building and gardens. Some patients can't handle virtual graphics or the sound problems, but most can, so its worth trying if you have decent internet access and can't get to a physical meeting. Oh, and their information board lists Phoenix Rising as a good site.

Bye
Alex

ggingues, I used to go to a support group when I lived in the Seattle area, but I currently live in a small town and there are none.
Zoe, do you live in a big enough town that you could go to an in person support group for CFS?

 

[*GG*]

I suspect not being believed or supported is why many CFS/FM sufferers get isolated & lonely.

I think it's better to distance yourself from negative & disbelieving people (family, friends or work colleagues) - they bring you down emotionally & mentally. And inevitably, this affects your physical symptoms as well.

Life, in some ways, is easier if you're on your own.

Difficult - certainly.

Impossible - sometimes.

But at least you know, you're genuinely ill, & don't have to waste energy explaining or begging for help.

The only people who REALLY understand chronic pain & fatigue are people who have some chronic invisible illness themselves.

The other thing you can do (if you feel you can handle it) is to tell people you have Rheumatoid Arthritis in every joint in your body. In other words, lie. Tell people you have some serious, debilitating disease that they know about & can understand.

Most healthy people have no concept of what it is like day in, day out, month after month, year after year to be so disabled. Healthy people can only relate to a couple of nights without sleep, or a migraine for 3 days or a week in bed with the flu (type of experience).

That is the limit of their understanding on what "chronic" means.

So, despite that craving for understanding, sympathy & help, I'm afraid sometimes it's better to just divorce family and friends.

Well said!

 

[zoe.a.m.]

Alex,
I'll have to look into the virtual meeting--sounds kind of far out--but worth trying. I take it it's out of Australia? It sounds like they've done some pretty neat things in trying to get support to people who are remote.

taniaaust1, is your grandmother close to the rest of your family? I'm asking because it sounds like she is just well enough not to really need to be seen as an ill person and many people who are in that spot choose to be on the side of the well in order to keep their relationships. I think it's the most basic (and awful) psych stuff that people hold together by making someone else the enemy/bad apple/black sheep. I can totally relate about wanting to at least be asked, and how bizarre it is to be in a world where you care for others but they are actually okay with not only not caring for you, but actually making you wrong and bad.

Hi Mya, somehow I missed your post yesterday, but want to thank you for your words. Sounds like you were able to find a group in Seattle but haven't found something where you are. It's very much the same here. I spent some time in Wyoming when I was 12, but I remember it so well! It is about as remote as remote can get sometimes though, and it's similar to WA in that things are just very, very far apart. I remember that it was over 100 miles to get to a sizable grocery store, though things could have changed since then.

My update for today is that I tried to shake off yesterday's email yuck and kept my head down. Went for a drive and a walk so that I wouldn't just spiral down all evening (though the walk might not have been the brightest thing) and, on my way back, was actually stuck at an intersection with my parents and sister in a car across from me. They were heading out to dinner. I had left a voicemail earlier at their house saying that I was just full of wonder about how they were treating me, and then drove, literally, right into that. it kind of feels like the universe is punching me when I'm down, but I like to think the universe is a little less malicious than that. What a bizarre thing to see your family pass you in a car and look at you like you're a heroin addict caught in the middle of a score--WTF? I try to keep the language clean here, but I'm pretty sure WTF was invented for something like this...

I know all too well the confusion of FM and CFS. I have both and have had so many people say, "I know so-and-so and she/he has FM and is in grad school and working part time, etc." They aren't the same in my experience, but my gosh you think people would get the idea that having both is worse than just one!

Sorry Judderwocky, I think I'm confusing who posted about having both FM/CFS.

 

[Mya Symons]

I can't even tell the two apart... everythin hurts when im tired... and im tired when everything hurts lol... why split hairs?

True judderwocky. What you say makes sense.

"There is another option for support. Log on to Second Life and attend one of three virtual support groups per week. As the service gets larger I suspect they will have to schedule even more meetings, at alternate sites, because Second LIfe can't handle lots of people at once, but there is support there if you are house bound. The ME/CFS centre is supported by Murdoch University in Western Australia, and has its own virtual building and gardens. Some patients can't handle virtual graphics or the sound problems, but most can, so its worth trying if you have decent internet access and can't get to a physical meeting. Oh, and their information board lists Phoenix Rising as a good site."

Thank you Alex, I will try the virtual support group.

 

[serenity]

ugh, Zoe, i'm so sorry! sounds like today didn't go much better for you. crud!
yes WTF is perfectly appropriate to our situation! haha!
yeh i do hate the "oh i know someone who has that." usually for me it's followed by "& they tried this or that magic remedy & you should try it it cured them." if i had a dang dollar for every time i heard that stuff, i'd be able to pay my medical bills!

 

[zoe.a.m.]

yeh i do hate the "oh i know someone who has that." usually for me it's followed by "& they tried this or that magic remedy & you should try it it cured them." if i had a dang dollar for every time i heard that stuff, i'd be able to pay my medical bills!

Yes, if we all got $100 for each time we were told those things, we might be able to pay for one decent lab test! The last I heard was that, after 15 years of CFS, colonics had cured a person. I don't even doubt it. I truly believe we are all different and share symptoms but our causes/weak areas could all be different just like our DNA is individual but we're all human! It just gets really old doesn't it?!

Does anyone have an opinion on "coming out" with what you're going through? I don't feel like I can hide my family's godawful behavior anymore--I just can't do it. But I wonder if it just ends up making things messier and worse? With no husband or family unit of my own, I've got no backup, so I'd be taking any backlash by myself.

 

[Mya Symons]

Alex,

My update for today is that I tried to shake off yesterday's email yuck and kept my head down. Went for a drive and a walk so that I wouldn't just spiral down all evening (though the walk might not have been the brightest thing) and, on my way back, was actually stuck at an intersection with my parents and sister in a car across from me. They were heading out to dinner. I had left a voicemail earlier at their house saying that I was just full of wonder about how they were treating me, and then drove, literally, right into that. it kind of feels like the universe is punching me when I'm down, but I like to think the universe is a little less malicious than that. What a bizarre thing to see your family pass you in a car and look at you like you're a heroin addict caught in the middle of a score--WTF? I try to keep the language clean here, but I'm pretty sure WTF was invented for something like this...

I am so sorry, that sounds like it really sucked! (excuse my language too, but I can't describe it better. :Retro redface I am really glad right now that my relatives live in a different state. Why is it so hard for family to understand when they, of course, have known us all our lives and should know that we aren't liars or drama queens? Hopefully, for their sake, they won't ever have to experience the same things we have.

Zoe, I wish I could give you some good advice. It sounds like you have already done your best to explain this disease to them and show them how you feel. What else can you do except to let go (try not to worry about their behavior). I wish I could follow my own advice.

 

[*GG*]

ggingues, I used to go to a support group when I lived in the Seattle area, but I currently live in a small town and there are none. I have not heard of exercise testing. Can you tell me where the Pacific Fatigue lab is?

Zoe, do you live in a big enough town that you could go to an in person support group for CFS?

California. http://aboutmecfs.org/News/PRJan09Pacific.aspx There is also a place in NY.

 

[*GG*]

there is also a support group on Yahoo, called CFalliance, besides this group is great! Very active.

 

[Sammy]

Family are the most hurtful people. I have had CFS for 10 years, since I was 15. My sister in law, psychologist, managed to convince my whole family (bar my mum) that it's all in my head, she says I have done nothing with my life, and I never will. I now have no contact with most of my family. It is very very lonely, but better than the alternative.
Look on the bright side, at least you can work 22 hours a week! Most of us just wish we could leave the house. Your husband sounds very supportive, mine seems supportive, but just doesn't want to know.

I think the only way for you to get on with your life, is to cut those negative people out of it. They don't deserve to know you.

Dejavu wow. Cut them out thats what I have had to do.

 

[Sammy]

Soz didnt realiz how old this thread was....