[MaggieS]

I have so many different diagnoses that I can never fully answer when the docs ask "what hurts", because it all does. I have been misdiagnosed and mistreated for my entire life. Told that I have this or that, only to go to yet another specialist for them to say 'oh no you have this'!

I was recently diagnosed with a rare genetic disorder. It would totally explain most of my life-long issues. I have mixed emotions. I am so glad to know what the deal is with my crazy body, where the pain and symptoms comes from, and to finally be treated correctly. I am sad for several reasons, the first being that I don't have long to live according to the doctors. I am having a surgery soon that may help.

The largest part of my sadness and the root of my post, is how do you deal with family and friends who appear not to believe you? I've been called a hypochondriac by doctors, so I understand why someone would think that. But my family? My friends? Even my children and spouse??? Yes, when I would be diagnosed with say MS, I would share with them...but then the next specialist would say it is not MS it is lupus. So I share that. I don't want or need sympathy, but I do need someone to CARE!

So, I've got this rare genetic disease, and must have surgery. Okay, I share this too. But the reactions and total lack of empathy has floored me! When I was finally approved for surgery, my husband got angry with me. When I asked why he was so upset, he said that he never thought it would happen so he wasn't sure he could take off work to be there for me???? One of my kids has said they won't help me at all during my hospitalization and recovery...too busy was the excuse. Family members haven't even bothered to ask if there is anything they can do to help.

I am the type of person who helps everyone, babysits, cooks, etc... But when I am in need, people don't want to help because I've cried wolf too often? I don't know how to handle this....

[kaliope]

i am so sorry that nobody seems to care about what is happening to you and you are left all alone when you need them the most.

what you said about "crying wolf" too many times probably explains it, but lets try and stay away from the negative connotation. if they have been dealing with medical issues repeatedly with you, worrying again and again, imagine what this has done to their emotions. while they may seem cold, callous and distant, can you see it as a protective factor for them, a way for them to cope with the roller coaster they have been on with you? as difficult as it is for you to deal with the constant let downs and pain and everything involved with misdiagnoses, your family is having to deal with this as well, on top of the powerlessness of not being able to do anything to help you. it becomes too much so they just shut down. refuse to deal with it any longer. are you able to see it from this angle? it may be that they just dont care any longer, but maybe not..

so maybe putting together some information on the genetic illness you have that explains how it mimicked all the other things you were diagnosed with, so they can see how it looked like you were crying wolf, would help them understand. just educated them on how this now explains everything. then they will see how you were not "faking it" all along. a little education goes a long way. email it, whatever it takes to disperse it. then you have done everything you can. if they really care, they will read it and come around to help.

i hope your surgery goes well.take care.

[MaggieS]

Thank you, Kaliope, for responding. Yes, I have thought a lot about how and why they may be treating me the way that they are. And I do see how some of them may feel that way.

I suppose that I feel that way because I personally would be the first to volunteer to help if they were in my shoes. And I have encountered this fairly often with other situations, groups, etc. It is my personal issue, and I have just learned to move on for the most part. But it doesn't lessen the hurt or the pain that I feel when it happens. I guess I have some serious abandonment issues that don't help the situation.

For example, I was pregnant 11 times. Only two of them were born. One was an ectopic pregnancy. Btw...I had severe reactions to birth control. With each pregnancy after my 3rd, I guess, the families stopped being there, and as the losses went on I lost folks from the church family and friends. By the last one, which was a loss, even my husband wasn't "available" to take me in for the D&E. And he was the reason I was there...he would never agree to a vasectomy! I had to beg not only for someone to take me to the hospital, but for someone to take care of my 2 year old as well. And then maybe two hours after I was dropped off at home, the person caring for my little one called to say she had to bring her home, and dropped her off for me to take care of. Thank goodness I'd not taken the pain meds yet.

So, while in most folks' minds I should have stopped getting pregnant, that was not their call to make. But it was still very painful to deal with their lack of empathy. And I felt very much abandoned each time that I had to deal with it alone.

I waited about a month after finding out about the disease to tell anyone outside my immediate family...husband, kids, sister. I spent that time researching and yes, just dealing with my emotions. When I told folks, it was in stages slowly reaching outwards. I would give them a link to NORD that explained the exact disease if they were online. If not, I tried to explain it. And now that I have connected with others who have similar diseases and issues, I feel better about explaining it. I can certainly put it in writing, and quote the websites. I can even give them a picture of the surgery to help explain that. But I am still very hurt again by their lack of empathy. I am dealing with a very serious surgery and outlook. I could use a shoulder or two!

When I was told that I would have to pay for certain aspects of the pre-surgery tests, and knew that I couldn't afford it, a friend stepped forward and organized an online fundraiser. It is so sad to me that not one single person from my family or my husband's family donated to the effort. Even the friend noticed and asked me about it. That was a very public snub in my opinion?

I will put together something to share with them, one way or the other. But I doubt it will do any good. I'll let you know how it goes.

[jaynedough]

Hi MaggieS. I'm so sorry this is happening to you. I have several different medical issues & have experienced a lack of compassion and support from those around me. I will say that my parents, who came from a time and place that didn't really understand some of my health issues, did eventually come around to a place of understanding. One thing I realized was that the pain of watching your loved one suffer can cause some pretty thick "mental callouses" to form, especially when it's a lifelong problem.

It sounds like you do have people in your life who do care. Please try to not let the negativity of the naysayers cloud the positivism of your supporters.

Perhaps now that u + docs have a dx it's time for your kids + spouse to talk to your doc. Let them hear it from a professional. With or without you present. A friend went thru years of changing dxs. It was hard on her as well as her family. When they found out what it really was, she asked her doctor to call her husband and the dr was quite willing to do it. You r going thru something very difficult. If it's genetic, then your kids need to know. You seem so calm + strong. Please keep posting + let us know how u r doing. Healthy thoughts and wishes being sent your way.

[(JD)]

Hopefully now that YOU know what it is, YOU can begin to heal from it, not die from it! Doctors are often wrong...and I pray they are in your case.

However, IF none of the family believes you... AND you find the end truly near, remember the tombstone: I TOLD you I was sick!



Think positively... research on the internet... you can change your genes (other scientists have shown this...) begin healing ?