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.

[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.

[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 (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