little family support

[Vera]

I just wondered if any of you have to deal with family that is not supportive. I have been sick for about two years and my husband seems to think I am making this all up. While I have not received an official diagnosis of WG, the docs have been dancing around it for about a year now. I finally have an appointment at CC Vasculitis Center this week. However in the last year I have had surgery and three biopsies as well as been hospitalized. I lost a job I love and have been caring for my father who suffered from dementia and died in Jan as well as my mother who is eighty. I just started a temp job when my mom was put in the hospital. My husband was upset because I had to take a day off to be with her and he was worried I would lose my job. He made a crack about this was my way of getting out of having to work and how he did everything around the house anyway while I laid around while i was perfectly healthy. Anyway, I just wondered if other people had problems with spouses that didn't realize how sick they were and how they dealt with it. Thanks for listening. Vera

[Gator]

I'm sorry. Do you really believe he thinks that you're making it up or lying to use it as an excuse? With so little info about him, and knowing how LITTLE the public (including doctors) know about WG, I'm trying to cut him slack. I'm by no means qualified to give you advice (I'm single) but would hope that maybe you're reading into it wrong. I mean, I hope he's just the type that teases... Also, if he gives you support other times take that to heart too as the bad times shadow the good and any support can help.

Off topic, but they couldn't use the 3 biopsies you've had to diagnose officially? Did the prednisone effect the samples too much? Good luck.

[Jack]

You are far from being on your own in having trouble from family members, the subject often crops up on the forum. I try to be understanding and realise that this disease puts them under a lot of strain too, but if your husband really does not believe you this may be a deeper problem. My own marriage broke up under the strain from my illness. Some people just can't cope with it or decide that they don't want their life to go in this direction.

[freakyschizogirl]

I'm from a family that doesnt do sympathy. I have often written on this forum that i get more support from friends than i do from my own family. My Mum has Rheumatoid Arthritis and me and her are constantly playing a game of trumps as to who is the sickest. I can honestly say i always lost as i dont look sick, and as my sister said one day "there's nothing wrong with you..."

You are not alone Vera. This forum and the people on it are very often the support that i need as they understand exactly where you're coming from. Sometimes people dont understand how a diagnosis can change your life.

[delorisdoe]

Before diagnosis it was a bit hard for me in that respect. For me not knowing and living in pain resulted in depression, depression is hard on a relationship. Add to that the fact that if you google some of the sympoms fibromyalgia comes up and ten years ago it was often called a fake and lazy persons disease. Once the diagnosis was made it changed to fear and pity. One person who's feelings never really changed was my mother in law. We lived with her at the time. I overheard her explaining to my husband that I am lazy and using my illness as an excuse to not vacume. Her proof...I was still working full time clearly I was not sick. I personaly believe there is a good chance your husband will come around when you have a diagnsis-fear will help. Having said that, nobody changes that much and if he has aways been unsupportive and you have aways accepted that then he will most likly not come around 100%

[Sangye]

Leigh, I agree that people don't change much unless they really work on themselves. It doesn't happen magically.

I'm sad for those of you in marriages with a spouse who doesn't believe you. That must be very painful. :sad:

[me2]

Vera its great that you have an appointment at the CC Vasculitis Center this week. This will help you more than a supportive spouse.
I'm sorry that you have to endure disbelief , dismissal, and discouragement. You will find many of us here who understand. I have had the illlness for over 30 years and have experienced a lot. The strain on relationships is painful. I have tried to think of it like this "Sometimes my throat hurts, sometimes my sinuses, sometimes my lungs, sometimes my friends - its all the disease." I try an not to EXPECT people to understand and then I am pleasantly surprised if they do. After all this time I still have to work at that. You may not always find compassion where you would like but sometimes it will also show up in unexpected places and times. Hang in there.

[Sangye]

What me2 said. :thumbsup:

[Chris G]

Vera - I makes me so sad to hear that your husband does not believe you are sick. Although you may feel very alone, I know that here in this forum, you are not alone.

I came across this amazing story about a year ago, and recently showed it to my husband. He has been very supportive of me all along, but I thought it would give him additional understanding of how I feel daily. Maybe it could help your husband to understand. Maybe not, but it's beautifully written, and I re-read it occasionally, myself.

The Spoon Theory written by Christine Miserandino | But You Dont Look Sick? support for those with invisible illness or chronic illness (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/) (I hope I'm not hauled away for trademark infringement)

I'm not sure the link came thru correctly - if not, you can google "the spoon theory" to find it.

Another thing that I think may help, is if your husband would go with you to your doctor appointments this week. Perhaps he needs to see and hear the doctors taking you seriously. If you receive a diagnosis, he should hear them say it.

It sure sounds like you have a full plate! Stay strong, and good luck this week. Keep us posted.

[DEE]

Vera hope you get the help and support you need from your appointment DEEx

[onatreetop]

Vera you are far from alone. I keep reminding my invisable husband and children that just because I work and keep moving that I am sick. It wasnt til recently that I believe it hit my husband. I had to start neb treatments because my lungs are not cooperating at the moment. When he saw me with the neb. they couldnt ignore it. It was loud and I use it in the living room while they watch tv. I know bad but I did it so they could see it. Last night I asked my husband to drive because my vision gets worse when I get tried lately. He did it. I have always driven everywhere we go. My oldest son has been acting out by not going to school to draw attenion to our family because of all of our disfuntions. We have had to start famliy therapy again. But this time its a male and I believe and hope that my son and husband who isnt around will make more of an effort to particapate with the children since I cant keep up with all of them anymore. My health has been ok til recently again so..........I require more rest and have had to had litho done again for the on going kidney stones.
You are far from alone like I said earlier. my friends and nieghbors have given me more support then my family.

[delorisdoe]

Vera you are far from alone. I keep reminding my invisable husband and children that just because I work and keep moving that I am sick
You are far from alone like I said earlier. my friends and nieghbors have given me more support then family.

fear??? Your friends and neighbors may be helpfull and supportive but they have less to fear, less to loose.:crying:

[drz]

Most clinics have a medical social worker that can help you with the family issue by meeting with you and family. They can help educate family about your illness and teach them how to be more helpful and more supportive. Of course they have to be willing to participate, but in cases where the problem behavior is due to ignorance and fear about your illness or denial, this family education and counseling can be very helpful. Might be worth a try. It will help clarify the issues for you. Sometimes it also helps to get a home health worker to come into your home to help with things and their visit offers you a sympathetic ear and supportive person and models for the family how they should behave toward you.

[stikker]

I don't think my husband understood how bad this was until he went to the Doctors with me. My wegeners nurse is very empathetic.(i think thats the word i'm looking for) She stresses that I'm fighting a serious disease and I should take it easy and rest if I need it. She always makes me feel better. I like to go in and see her. I always leave happy. It did my husband a lot of good to hear her talk about the seriousness of this disease. I have to admit he has stepped up. Your case is more complicated by the fact that you don't have a diagnosis. That would make me crazy. Sorry. I hope things get better.

[Vera]

Thank you so much for all your support. It makes me want to cry! This has always been somewhat of an issue in our marriage anyway-he is very much a perfectionist and I am not. As the stay at home mom of four I'm glad I wasn't! Anyway, I get that he works tons of hours and does lots of stuff around the house and I tell him every single day how much I appreciate it. He did go with me to the last doctor's appt and he was more sympathetic for a while but then back to same old same old. The worst thing is his attitude rubs off on the kids - although I have read a lot of posts and found it interesting that a couple of people said their late teen/early twenties daughters seem to not believe they were really sick either. I have a twenty and eighteen year old and they seem less sympathtic than my younger kids. Anyway, there I go complaining again! Thank you so much for all your support. This board has made the last couple of months bearable for me. Reading everyone's struggles makes me realize I am not alone and a lot of people have it much worse than i do.

[onatreetop]

Fear would make sense but I am afraid it is denial. I have four children also, 15, 14, 14 and 8. Three teens god help me. But my middle son is the one who has taken on the roll of leading male. He has helped so much and in so many ways. at the same time feel horrible that he has felt the need too. The therapy has helped some. My husband was never been demanding thank goodness. But he also does as little as possible when hes home. My children are more awear of what I am going through than my husband. When I make the effort to stay up late to talk to him I get no response. he doesnt even try to communicate. We can go four or even five days without a word or seeing each other. Thats not good after 20 years together. I almost feel as if I am trying to train my whole family to be self reliant in case my health goes bad quickly. I need to know that they will be okay for the future no matter what it holds.

[vdub]

I can honestly say i always lost as i dont look sick freaky is so right... Aside from the steroid moon face and the pot belly (which is becoming pretty typical throughout America and Europe for all people), I look perfectly normal. I can be sitting down and holding a good conversation, but I'm oh so uncomfortable because my muscles and joints are in pain and my nose is dripping. People don't notice the nose all that much and they don't know anything about the muscle pains. They also don't notice when I'm running to the bathroom alll the time because I'm late in taking my ddavp. For the most part, I'm just Joe 6-pack and no one is aware of the strange awful disease I have. Eventually, they find out, but I don't think they ever appreciate the seriousness of the disease and that's fine with me.

But I'm retired, my kids are on their own, my wife fully understands, and I don't much care what anyone else thinks, so it's a little different for me. I do remember the days 3 years ago when I was constantly tired and going to sleep on any available semi-flat spot. My immediate family was worried, but I wasn't --- I was too tired to be worried. After I was diagnosed, i did start getting things in order; talked to kids about what pieces of land they wanted (they are both grown), how they could help take care of their mom, I moved all our money under two brokers instead of 10 and told the kids where everything was. I think I'm going to live a long time, but still.... it's a wake up call.

It sounds to me as if your husband is in denial. Is he going to go the Vasculitis Center with you? He really, really should. WG is complex and you will be bombarded with questions and solutions. He might remember stuff that you don't and needs to hear exactly what the docs say. Even if you don't have WG, you could have something similar like sarcadosis which is also bad news.

[malin]

I don't really have any good advice because my situation is the complete opposite, I have to calm my partner down because he worries TOO much. Sometimes he can almost get in a bit of a panic if I'm not feeling 100%. :/

Might sound like a nice problem to have but sometimes it makes me "down play" my symptoms and try to pass things off as "just a cold, or I'm just really tired and its cold etc etc". This isn't always the best of things to do when you're a Weggie...

Also I have found the Spoon story very helpful in trying to explain why sometimes I need him to help me out with even the most simple things like cooking dinner for the night and so on. He has really taken this onboard but we now also have more of an understanding. I don't ask him for help unless I really need it, it's so easy to take advantage of the situation that I usually stop and think for a minute before I ask him.
Like "Am I really out of spoons or am I just being lazy". It just helps to make sure I don't slip into a comfy/lazy zone and ask for help out of habit more than out of need.

[delorisdoe]

I don't really have any good advice because my situation is the complete opposite, I have to calm my partner down because he worries TOO much. Sometimes he can almost get in a bit of a panic if I'm not feeling 100%. :/

Might sound like a nice problem to have but sometimes it makes me "down play" my symptoms and try to pass things off as "just a cold, or I'm just really tired and its cold etc etc". This isn't always the best of things to do when you're a Weggie...

Also I have found the Spoon story very helpful in trying to explain why sometimes I need him to help me out with even the most simple things like cooking dinner for the night and so on. He has really taken this onboard but we now also have more of an understanding. I don't ask him for help unless I really need it, it's so easy to take advantage of the situation that I usually stop and think for a minute before I ask him.
Like "Am I really out of spoons or am I just being lazy". It just helps to make sure I don't slip into a comfy/lazy zone and ask for help out of habit more than out of need.


This is exactly how I live with wg. Just yesterday my husband asked me why I was doing a urine collection again so soon. I was really hoping he did not notice.

[NicShaf]

Vera,
I'm sorry to hear that your family isn't very supportive of your WG. I think having a support system is so important in the recovery process. I hope that they come around, some people just have different ways of dealing with adversity. But, until they do come around, know that everyone on this site is here for you, and we all understand what you're going through. Hugs!