I've been stuggling with my health for several years and have had a couple of incorrect diagnosis - Lupus / Carpal tunnel. Through it all I have continued to work and be as active and positive as possible. The diagnosis of CMT & CIDP were made after seeing 4 neros over the past 10 months and finally having a nerve biopsy. The main nero. (a nerve/muscle specialist at a respected University Medical Center) said there was no doubt about the current diagnosis.
Sadly at 55, I have outlived my family. I only have one close cousin in his 70's and several distant cousins I don't know well. My husbands family is really all I have (we've been married 13 years - first time for us both, no children). This weekend we felt it was time to tell his family. My Mother in law responded "Oh really? That's too bad - next week it will probably be something else." flipped her hands and changed the subject. One brother in law when he heard about the expense of the treatment (IVIG) said " nobodies life is worth that kind of money, nobodies....when it takes that much to keep you going it's time to throw in the towel". The other brother in law took me aside expressed his sadness at my "misfortune" and then said that I really needed to think of my husband, that I needed to divorce him before this disease took everything he had worked so hard for.
I am stunned by their reaction. I have always gotten along well with everyone and I feel betrayed. Personally I can't imagine saying those things to anyone let alone a member of my family.
Has anyone else had to go through something similar? How have you handled it?
Wow! Your inlaws sound more like outlaws to me! I like to treat such rude behavior from others directed towards me or my loved ones with sarcasm. To the mother in law, I would have said, "well, thank you, mom, I know that during my times of need that I will be able to count on your kindness and support to help get me through this difficult time". To brother in law #2, "You DO remember that our wedding vows were for better or worse and in sickness and in health...RIGHT??" Or perhaps, "I'm so sorry that my suffering is such an inconvenience for you". Then next time the mother in law complains of a headache, say "Really? That's too bad, well, next week it'll be something else with your advanced age and all!"
You have to come up with (and practice) snappy comebacks for anything you can imagine that someone might say to you so that when they do, it'll just roll right off your tongue.
Yeah....They do act kind of like outlaws! My family was always very loving and supportive so perhaps I'm a bit thin skinned. Thanks for your response. Great come backs! I wish I could think that quickly on my feet....but I'll keep those under my belt because I'm sure I'll get the chance to use them :-) Thanks so much for your response, it's appreciated more than you can know. Sunshine said:
Wow! Your inlaws sound more like outlaws to me! I like to treat such rude behavior from others directed towards me or my loved ones with sarcasm. To the mother in law, I would have said, "well, thank you, mom, I know that during my times of need that I will be able to count on your kindness and support to help get me through this difficult time". To brother in law #2, "You DO remember that our wedding vows were for better or worse and in sickness and in health...RIGHT??" Or perhaps, "I'm so sorry that my suffering is such an inconvenience for you". Then next time the mother in law complains of a headache, say "Really? That's too bad, well, next week it'll be something else with your advanced age and all!"
You have to come up with (and practice) snappy comebacks for anything you can imagine that someone might say to you so that when they do, it'll just roll right off your tongue.
I've read this a couple of times and just did not know what to say. I'm sorry they treated you so badly.
It is difficult to explain this disease to people. Of course, no one knows about CIDP and if they know about GBS they think you have recovered from it if you are walking around. Sometimes I say it is a lot like MS, but then you might hear, "My friend has MS and is fine, don't worry." If I take a cab to an infusion, I just say I have to go to the cancer center and lean against the wall and rest- no more questions.
Although my family has been supportive, some members were less so and it took time. Frankly, I think they needed to see symptoms- pain, difficulty walking, difficulty lifting my arms, etc.- before they really accepted the facts.
As for the comments, I can be really unpleasant about such things. If divorce were suggested, I might offer, "It hasn't occurred to you that this is a part of marriage?" or "Don't worry, this could kill me. Let's just give it a few months." (That's not likely!) As for mom in law, she may now be the healthier one, so no- you can't clear the table, etc. It is something else every week with CIDP, right mom, so sorry, I need a nap. (This is true.) As for the expense of IVIG, cancer and AIDS treatment were once outrageously expensive. Let your brother in law know that you are grateful that he trusts you enough to share his end of life choices with you and if he ever needs serious medical treatment (as high costs often occur at end of life), you will be sure to tell his doctor to pull the plug.
OMG Joy - I am laughing for the first time in weeks! THANK YOU!! This diagnosis has been fairly recent and I've had some difficulty taking it all in. Not having people think I "look sick" adds to the problem that no one has heard of it before. My doctor has told me to tell people that it's basically a relapsing, remitting form of ALS - while that isn't all that accurate it sure shuts them up!
My Union is keeping my insurance going until Medicare takes over. Social security disability approved me in 1.5 months. I have always felt responding in kind is appropriate. My daughter thinks I am commiting social security disability fraud I told her she was just pretending to be a bitch. She got the point.
I don't see how your daughter could think your commiting fraud when you got approved that quickly. Social security doesn't just hand out disability. 1.5 months - that is lightening fast for them!!
Robert Martin said:
My Union is keeping my insurance going until Medicare takes over. Social security disability approved me in 1.5 months. I have always felt responding in kind is appropriate. My daughter thinks I am commiting social security disability fraud I told her she was just pretending to be a bitch. She got the point.
Hi maggie. I had not thought family could react so negatively. I am struggling with an overprotective family who monitor everything I do and totally mollycoddle me. Almost suffocating and we argue whenever I want to do something and they think I should be conserving my strength. Reading your post has made me realise how lucky I am. Thank you.
Well Nin, there are always extremes aren't there? Both ends of the pole can be difficult in their own way. If my parents and brother were still alive I'd be struggling with overprotective too. Love your family and friends while you have them....it can all change so quickly. You take care :-)
Nin said:
Hi maggie. I had not thought family could react so negatively. I am struggling with an overprotective family who monitor everything I do and totally mollycoddle me. Almost suffocating and we argue whenever I want to do something and they think I should be conserving my strength. Reading your post has made me realise how lucky I am. Thank you.
My God, if it had been ALS they'd probably have buried you alive in the back yard under the swing-set. Regarding snappy comebacks, they can do more harm than good unless they come to you naturally.
However, now is the time to start the novel. The characters?... Well, the in-laws! Talk about sweet revenge! And, it can be a catharsis and who knows, maybe even a bestseller. My nuclear family cheated me out of money, had me sent to jail and pilfered much of my inheritance in some very devious ways. They are all dead now; heavy meat eaters, smokers and imbibers to the max. Shame it all went south with them... sad.
CIDP... they said I deserved it (probably because I refused them business loans or sent Christmas gifts that didn't meet their Great Expectations).
My in-laws, on the other hand; I would trust them with everything I own and with my life.
Get an ergonomic keyboard and get to work on that novel! And, remember to use a pen name.