If you have a chronic illness...

[shanvan]

that involves pain and a host of other symptoms, how do you deal with relatives who constantly tell you about their annoyance aches and pains just after you explain that you have had a bad flare up which has made it almost impossible to do anything? By the way, I'm not complaining to them about my illness, more like explaining why I haven't been in touch or wasn't able to do x,y or z.

 

It's not that I expect them to understand completely, but it seems like they just think I have problems similar to theirs. I seem to be getting this quite a bit from my brothers especially. I bite my tongue, but I'd so like to give them an earful. These particular brothers are also the relatives that leave me to deal with my mother's health concerns, appointments etc.

 

So, if you are in a similar position, what do you do?

 

Shannon

[MariannNOVA]

I'm sorry that you are dealing with a chronic illness. :grouphug: I care for my daughter who is 30 who is dealing with chronic lyme's and a host of other maladies. I no longer speak about it to most of the people in my family b/c of the unbelievable lack of understanding.......and my sister is an M.D. and her lack of understanding/compassion/empathy/patience are not to be believed.

 

I only answer when folks ask how she is doing -- I never volunteer that I spent X number of days driving to and from doctor's appointment or to and from the hospital for tests b/c I'll hear from my mother how she 'understands' b/c she hasn't been able to get to a pedicure appointment. The folks who do ask (and they are few) probably number no more than 3 and I know they are people who do understand and do care.

 

I'm afraid that I have no advice -- I do feel for you. I do know that a couple of times a year, my dd will just kind of lose it and vent -- maybe she does it even more with her dh, but with me, she really tries to be positive and hopeful. Oh, and my older dd who is 32, NEVER asks how her sister is doing, never calls although I have been there when dd30 calls and leaves voice mails to dd32 wishing happy birthday, etc.

 

Folks do not seem to get at all that dd is unable to sit in a car for any amount of time, cannot travel to spend the night anywhere as her home is set up for her and there is little or no likelihood that she can be comfortable anywhere else, AND that she has multiple chemical sensitivities and it is just easier for her to stay home. Her husband attends every single family function that they are invited to and not once has anyone ever expressed anything more than the slightest interest in how she is doing. My snarky observation is that most folks cannot handle 'chronic' -- it drags on way too long for them.:glare:

 

All that being said, she IS improving....but folks don't seem to care about improvement......they want her to be 'over this.'

 

:grouphug::grouphug::grouphug:

[KristinaBreece]

My snarky observation is that most folks cannot handle 'chronic' -- it drags on way too long for them.:glare:

 

Maybe snarky, but IME, also very true.

:grouphug:

[Nakia]

I know what you mean. I have bulging discs, degenerative disc disease, and arthritis in my cervical spine. I hurt every single day, but most of the time it is pretty manageable. About 3 or 4 times a year, I will have a flare-up that puts me on bedrest pretty much for a week or so. I can't take the large doses of anti-inflammatory medications I need because of another medication I take daily. Narcotics make me pretty nuts, so basically I am debilitated 3-4 weeks a year. It sucks.

 

Anyway, about a year ago my mother got a catch in her neck from "sleeping the wrong way." She was talking about it like she was dying and was thinking of going to the doctor. I told her the best thing to do was to take motrin and ice it. She screamed at me, "You have no idea how bad this hurts!!!!!" I was like :eek::cursing::banghead::glare:

 

I just said, "Whatever, Mom" and moved on. It's pointless to explain it to some people. They don't get it and don't want to.

:grouphug:

[Mom0012]

.

Edited March 15, 2011 by LisaTheresa

[elizabeth]

Well . I have been through this so many times with my husband's idiotic friends that I really, truly do say" I have Rheumatoid Arthritis and fibromyalgia,******le." Stone cold sober. That seems to work. I tried being polite and realized this just gave these certain individuals "permission" to further invade my privacy. Family knows better and would rather irritate a bear who has not eaten for two years than tangle with me. That said the bottom line for me is that if someone is so intrusive and ignorant so as to play the one up game with suffering then I do not need to have social contact with them thus my clear statement saves us both time and trouble. Chronic health conditions are not for the weak of will nor the polite if you try to please and appease others many chronic conditions will kill you. Say no and have boundaries. It is like having a baby once you have crossed the Rubicon it is easy the next time.

[Jean in Newcastle]

You may not believe since I do talk about it here in specific threads that I figure people are welcome to read or to ignore, but I do not talk about it much to my family and friends. They know I have it. They know it is chronic. But when I went to a specialist last year, even my mother said, "Oh, are you sick?" :banghead:

[MariannNOVA]

You may not believe since I do talk about it here in specific threads that I figure people are welcome to read or to ignore, but I do not talk about it much to my family and friends. They know I have it. They know it is chronic. But when I went to a specialist last year, even my mother said, "Oh, are you sick?" :banghead:

 

:grouphug:

 

My sister (the M.D.) will ask in a sarcastic tone: 'So, how is C? Is she better yet?'

 

She told me a couple of years ago that dd's M.D. was really just practicing with 'snake oil.':glare:

[KristinaBreece]

Well . I have been through this so many times with my husband's idiotic friends that I really, truly do say" I have Rheumatoid Arthritis and fibromyalgia,******le." Stone cold sober. That seems to work. I tried being polite and realized this just gave these certain individuals "permission" to further invade my privacy. Family knows better and would rather irritate a bear who has not eaten for two years than tangle with me. That said the bottom line for me is that if someone is so intrusive and ignorant so as to play the one up game with suffering then I do not need to have social contact with them thus my clear statement saves us both time and trouble. Chronic health conditions are not for the weak of will nor the polite if you try to please and appease others many chronic conditions will kill you. Say no and have boundaries. It is like having a baby once you have crossed the Rubicon it is easy the next time.

 

:grouphug::grouphug:

 

RA is an awful thing by itself-- I can't imagine adding Fibromyalgia to the mix.

[shanvan]

You may not believe since I do talk about it here in specific threads that I figure people are welcome to read or to ignore, but I do not talk about it much to my family and friends. They know I have it. They know it is chronic. But when I went to a specialist last year, even my mother said, "Oh, are you sick?" :banghead:

 

 

I'm sorry -- but thank you--This made me laugh!

 

I've gotten from a friend, "Maybe you should go to the doctors. Can't they help you so aren't so tired all the time. There must be something they can do for you." DUH!

 

That particular friend told me he is still smarting from my response, which I won't post here. But, I am super comfortable with him and will say anything. Maybe I should try the same with family. :confused:

 

Shannon

[Green Vixen]

that involves pain and a host of other symptoms, how do you deal with relatives who constantly tell you about their annoyance aches and pains just after you explain that you have had a bad flare up which has made it almost impossible to do anything? By the way, I'm not complaining to them about my illness, more like explaining why I haven't been in touch or wasn't able to do x,y or z.

 

It's not that I expect them to understand completely, but it seems like they just think I have problems similar to theirs. I seem to be getting this quite a bit from my brothers especially. I bite my tongue, but I'd so like to give them an earful. These particular brothers are also the relatives that leave me to deal with my mother's health concerns, appointments etc.

 

So, if you are in a similar position, what do you do?

 

Shannon

 

 

Hi Shannon,

 

Sorry you're family isn't being supportive! How long have you been dealing with chronic illness? For some people it takes a LONG time before they can even begin to understand or accept chronic pain/illness. I was pulled out of 1st grade because of my Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). I am now 33 and my Dad just "got" it about 6 months ago. Seriously, it took over 25 years, of which 16 of those I lived with him :banghead:!

 

I think it is especially difficult for men to allow themselves to let it in that something is wrong with their loved ones. I know my brother struggled with it until he was hit by a drunk driver and started living with chronic pain, and other issues.

 

Have you heard of the Spoon Theory? It is a wonderful explanation/story of living with chronic illness and would fit for chronic pain as well http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/. I ended up posting it on my Facebook page so others could learn from it and got some really nice feedback.

 

It is hard and frustrating to hear others complain about their ailments when they won't acknowlege yours. I think if they were more understanding it would be much easier to hear about their complaints. When they aren't you really just want to roll your eyes and tell them to live in your shoes for a day.

 

(((Hugs))),

 

Marisa

[Wendi]

I'm so sorry for your struggles. :grouphug:

 

I can relate somewhat. I have OCD. Now, "OCD" is mentioned in a lighthearted, sarcastic, or joking fashion in lots of TV shows, movies, and other pop culture. Anyone who's picky or overly neat "has OCD".

 

OCD is not fun. I was never as disabled by it as some people are, but I certainly was suffering greatly before getting on a proper medication. Washing my hands until they were cracked and bleeding, losing weight because I had fears of food being contaminated and would only eat certain things, calling my husband in tears about some paralyzing fear.

 

So when I bring it up, and someone laughs, "Oh, me, too!" I feel very frustrated.

 

Wendi

[ElaineJ]

I have fibromyalgia and I know what you mean about the comments. :grouphug: I think this sort of comment comes from two realities. There are the people who want to sympathize with you and think that they are doing that by relating your pain to their own experience. Although the comments themselves can be hard to handle, I know the heart behind it is loving. And then there are those people who just can't see beyond themselves. I think we all have a good degree of this disease. ;) and I agree with the PP who said that most people (even doctors, I find) just can't handle chronic illness. I hope that the experience can help me to better understand how to relate to those with long term medical challenges and try not to judge. I'm so sorry you are dealing with this!

 

ElaineJ

[Splash]

I'll just be honest here. My sil is dealing with an incredible amount of issues and chronic disease. I honestly do not know how to be supportive. I'm afraid to say anything because it can and has been taken wrong and upset her. I feel inadequate and unable to communicate. No I don't know what it is like (I'm very thankful for that) however my life also has trials pains and difficulties, but I feel I'm not able to ever say anything because her difficulties are always worse. But if I don't and they find out then I'm leaving them out.

 

I pray for her daily, occasionally communicate with them, and try to be helpful when I can. Brother and sil have only been married three years and known eachother 5 yrs. In that time she's had cancer, a difficult pregnancy and now POTS, Immunodeficiency disorder, dysautinomia and has been bed bound since July in pain, nausea and heart problems. Their son is 2.5.

 

If you know how I can be supportive, I'll gladly listen and try harder.

 

Kimberly

[mom31257]

I feel that I'm having the opposite problem. My sister has several chronic pain issues (disc issues and nerve damage). I have always tried to be loving and as understanding as I can. I've never put pressure on her when she can't do things. I have another sister with fibromyalgia, but it's pretty mild. She has sleep issues because her child has severe epilepsy and has a lot of seizures during the night.

 

I have been having some pain issues in my legs and am concerned it might be vein related so I'm going to a doctor next week. I feel like both are trying to downplay my pain like it must not be a big deal.

 

I don't get how they cannot understand when I'm just concerned and want to make sure it's not something serious like PAD or PVD.

 

The three of us have always been very close, but I do feel our relationship has been more strained since they have serious issues in their lives. I almost feel they assume I can't understand and treat me accordingly. Does that make sense?

[Giraffe]

I have chronic pain (fused spine with replacement discs, degenerative disc disease, etc.). I see both sides of the coin. I try to go about my days as best I can, but when the pain gets to be too much, I'm flat on the couch or bed. Even DD will send me to the couch when she sees I'm in pain. It's sad that a 3 yo knows so much about pain and can discuss it so easily, but that's life, I guess.

 

My family doesn't like to talk about their aches and pains around me for fear of upsetting me, but I tell them to just go on and talk. I know it hurts, I know their pain scale is different from mine, and I know it helps to talk. I don't talk much about mine because it's an every day thing - I always hurt. I'm learning to speak up when it's really bad though and that's helping. I try not to minimize others' pain just because mine is worse.

[TravelingChris]

Chiming in here- hardly anyone gives me grief but that is mainly because one- I don't have family except immediate and one brother who never says anything wrong or assumes stupid things and two- I must give off an aura of being no nonsense. But what I do get a lot of from all sorts of people is why don't you do X- it will cure you. X can be a herb, juice, exercise, pyramids, what have you. So I get lots of 'helpful" advice on how to manage all my ailments- Sjogren's Syndrome, Asthma, GERD, Migraines, Rheumatoid Arthritis, Thrombophilia. I also get plenty of advice for my daughters too. No, I don't need it. No, I don't believe you have the magic cure for all my ailments since they aren['t all related anyway.

[LNC]

I'll just be honest here. My sil is dealing with an incredible amount of issues and chronic disease. I honestly do not know how to be supportive. I'm afraid to say anything because it can and has been taken wrong and upset her. I feel inadequate and unable to communicate. No I don't know what it is like (I'm very thankful for that) however my life also has trials pains and difficulties, but I feel I'm not able to ever say anything because her difficulties are always worse. But if I don't and they find out then I'm leaving them out.

 

I pray for her daily, occasionally communicate with them, and try to be helpful when I can. Brother and sil have only been married three years and known eachother 5 yrs. In that time she's had cancer, a difficult pregnancy and now POTS, Immunodeficiency disorder, dysautinomia and has been bed bound since July in pain, nausea and heart problems. Their son is 2.5.

 

If you know how I can be supportive, I'll gladly listen and try harder.

 

Kimberly

 

Thanks for your honesty. That helps those of us in your sil's position understand. I would tell your how inadequate you feel - leaving out the part about you not being able to share your tribulations bc hers are always worse. But, sharing that you want to be more supportive is a wonderful start...

[shanvan]

I try not to minimize others' pain just because mine is worse.

 

Yes, this is why I don't say much. I try to respect the fact that others have struggles too, and to them they are very real. And I try to be sympathetic. Still, while aches and pains b/c you have slept the wrong way can be very painful, they are temporary and will go away. Those dealing with something chronic have the added burden that it is never going away and daily fears that it will get worse at any time. They struggle with comparing what they were once able to handle (and what healthy people can do) vs. the reality that there are limits on their lives now because of illness.

 

With my family it is becoming annoying b/c it is obviously a one up conversation to them. My biggest problem is that they minimize my issues so that they can leave me to deal with my mother who also has quite a few health problems, needs help with her bills, appointments, etc. They are brushing my issues aside and at the same time adding more stress to my life.

 

I can completely understand that others may not really know how to be supportive. For me the most helpful thing is when others don't have unrealistic expectations about what I can do and are understanding when I say no or "I need help" or "I need to be left alone, so I can recover".

 

There are a couple of women at church who are very understanding (now that I have told them my health issues) and do not pressure me to attend x,y, z church function. Then there are those at church who still pressure me and then try to make me feel guilty when I don't attend. One particular person at church I am getting ready to have a conversation with -- not a mean one--just matter of fact. He is constantly pressuring.

 

Anyway just my thoughts on a difficult situation. I know it's not easy on either end.

 

Shannon

Edited March 15, 2011 by shanvan
spelling!

[Jean in Newcastle]

I wanted to chime in and say that I've been on the other side too because my dh has chronic problems that are different than mine. I cannot totally understand his problems and he can't totally understand mine. It can be frustrating when you love someone and want them to be better. So you suggest this treatment and that, which gets wearisome for those of us who have had these conditions for a long time (20 years) and have tried all of that!

 

When someone close to me asks me how I am, my answer is "Same as usual." It lets them know that I'm not miraculously cured but it's at a level that I know how to handle. I usually only specifically bring up my pain even to my husband when I'm in a particularly bad flare or have some new wrinkle in the mix. My dh and now ds13 are the only ones though who can walk into a room and tell that I'm in pain. My pain requires me to concentrate in order to talk and act normally but it is not the kind that leaves me writhing.

 

When I am describing to a loved one like my mom how I've gotten worse, I've learned to couch it in terms that she can understand. It's easier for her to "get" how debilitating it can be when I tell her that "I used to be able to vacuum the living room in 10 minutes. Now it takes me 2 hours because I have to take so many breaks". It quantifies things for her." I also use these kinds of examples when talking to my doctors because the words "increased fatigue and pain" are surprisingly nebulous.

[rieshy]

The spoon theory was a fabulous link! Thanks Marissa.

[shanvan]

Hi Shannon,

 

Sorry you're family isn't being supportive! How long have you been dealing with chronic illness?

 

I think around 4-5 years, but did not realize it was a medical issue until about 3 years ago. It is possible that I began to develop symptoms up to 10 years ago--but they were mild. Mine was diagnosed as fibro, but now they say maybe sjogren's and maybe they will never know. Whatever it is it is very difficult sometimes.

 

For some people it takes a LONG time before they can even begin to understand or accept chronic pain/illness. I was pulled out of 1st grade because of my Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). I am now 33 and my Dad just "got" it about 6 months ago. Seriously, it took over 25 years, of which 16 of those I lived with him :banghead:!

 

All I can say is wow -- but I can see this with my brothers, so it shouldn't surprise me.

 

I think it is especially difficult for men to allow themselves to let it in that something is wrong with their loved ones. I know my brother struggled with it until he was hit by a drunk driver and started living with chronic pain, and other issues.

 

Have you heard of the Spoon Theory? It is a wonderful explanation/story of living with chronic illness and would fit for chronic pain as well http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/. I ended up posting it on my Facebook page so others could learn from it and got some really nice feedback.

 

It is hard and frustrating to hear others complain about their ailments when they won't acknowlege yours. I think if they were more understanding it would be much easier to hear about their complaints.

 

Exactly!

 

(((Hugs))),

 

Marisa

 

 

Thanks for the :grouphug:. Here's one for you! :grouphug:

[Splash]

Thanks, I'll try.

Edited March 16, 2011 by Splash
tmi

[Koerarmoca]

We have quite a few chronic conditions in our home, I get SOOOOOOO irritated with my mom for one. I have extreme cold urticaria I can not be cold, touch anything cold, eat anything cold. I have a few other pain issues (fibro for one) and I am just weak I have lots of muscular/pain issues and my mom always tells me "you really should ICE your knees" as if I can even do that.. it drive me right up a wall.

 

I am more bothered when everyone under the sun tries to employ my dh for manual labor. he might big a big strong tough guy but her has severe back issues (he was in a parked car that was hit head on by a drunk driver he broke his back, ribs, and has never been the same since) but sure he can move that couch and mow your lawn... ugh.

 

I have given up on talking to most people about anything, especially related to my kids. I can not tolerate grown adults who don't have sympathy for children who are in pain or can't live normal lives.

 

I try to be sympathetic to others but sometimes my plate is just so full with sympathies extended to my dh and dd's its really hard to have compassion for others and their stubbed toe. I pray I can be more compassionate.

Edited March 15, 2011 by MichelleC