Dealing with Family

[lilly608]

Thanks to all of you for welcoming me!

I am having a very hard time with family members (siblings/parents) that totally think this is all in my head, although I have been diagnosed through one neurologist, and moving on to my second at the University hospital for treatment options.  I have a multitude of symptoms crashing at me and no one wants to understand or help me.  I have had a history of other health issues with three major surgeries in one year:  cervical disc fusion, total hysterectomy, and lumbar laminectomy all in 11 months (2007-2008)!  All surgeries were somewhat successful (the hyster for sure), but I still suffer with lots and lots of back issues and need another back surgery, like now.  However, I am not rushing into anything until I  see the MS doctor; I am so anxious to see how much of my pain is derived from my DDD (degenerative disc disease) or the MS.  

Do they really think I made up all of this, including past surgeries?  I don't think doctors perform them just to appease a patient's "all-in-my-head" syndrome!  Now, do they really think that the neurologist is lying as well?  Just to appease what is showing on the MRI and through my optic neuritis events, which finally have been documented with the neuro optho?

So again, I ask, have any of you experienced this ignorance?  I realize that it is hard to believe everything I have been through and I am only 47, but I have three children and seriously do not want to be or feel sick anymore!  I am SO tired of trying to defend my illness and/or trying to make people understand what I am going through, and why I behave as I do (fatigued beyond imagination), and the constant state of pain.  Of course, it is also the fact that I am even being treated by a pain doctor - a highly accredited doctor, I might add. They think that is nuts too.

Also, I really do have to go it alone since my husband is not concerned about helping me and does not seem to grasp what a dx like this means.  That is a post for the counseling site in an of itself!  It is a very lonely state of affairs sitting there by myself getting news like this from both the optho neuro and the neuro!

So any thoughts about how I can go it alone and dealing with being alone.

Thanks again to all for any help and guidance you can offer.  

God speed to all, and may you all have peace!!  

Lilly

[ku111]

I am so sorry you are having to go through this.  I post about "Jordan" my son on this forum.  We do not have a firm diagnosis.  we only have "highly suspicious for "MS or NMO".  Before this forum I was absolutely lost, sad and so very confused.  I think a lot of it was because I felt so alone.  I may not be the best person to offer any great advice but I can definately listen.  I have the school say he looks so good and we don't see anything wrong and work say "we were really busy yesterday and we are tired of covering FMLA people".  Well, I can tell you there is something very wrong here!  I can tell you I am not having fun when I miss work-I'd rather be busy right with them than helping my son walk to the bathroom.  Jordan knows, we know, the dr. knows and the tests show it and most important HE FEELS IT!  You definately know something is wrong.  I had to gather myself and strength and limit the negativity.  I just I think became hardened to the comments and decided to focus on making him better.  I have distanced myself from a few people.  It is hard to do because I truly care about others.  I think a lot of people don't understand because they have never had anything bad happen, I think some are scared, some don't know what to say and a few are self consumed.  Sad all the way around.  Just worry about YOU for now.  Concentrate on making you better and I am always here to listen.  I am glad you are here and am sending many well wishes and hugs your way.  This is a great place to be and these strangers have made such a difference in my life.  I hope it does the same for you.    

[tingletingle]

Lilly,

I really feel for your predicament. Having such a large family a dx of MS really upsets the status quo. It is unusual that all members are not sympathetic.

I have 4 siblings and a Mum left and all reactions are different. Some appear angry that I am soaking up unnecessary sympathy, others can't see what all the fuss is because I look so well, and there is the other extreme with my Mum very concerned like a mother is supposed to be. So for me it has been challenging.

The last family function everyone just stared at me, whispering to each other or so it seemed looking to see any sign of disability.

What I did was then to send everyone an email with an overview of MS and the four different types which was supplied by our MS society. It certainly didn't change everyone's opinion but at least it let me have my say.

We all have the amazingly complex and different relationships with our family and I think communication strategies need to be adjusted accordingly in order to allow the message the best chance of being heard.

For all of that, you know the people who understand me best I feel are the MS sufferers themselves right here and face-to-face.

Wishing you much peace and understanding
Blessings
Alex

[lilly608]

Wow - Everything you say sounds like a perfect world!  Thank you so much for explaining all of that to me, but I do not think you understand what I am saying.  Sit my family down for a meeting - all ten of them to talk about me?   That is nuts!  I have been telling them some of the clinical stuff; they don't listen.  They know nothing about this disease, but crap if when my nephew was dx'd with autism, did we not all learn everything about the disease, where he is at, etc., etc.  You see, I live in a family where I am the "real" person; I see things for what they are, I help (if I am allowed), etc.  I have just had SO much wrong in the past several years - that obviously can be summed up to the MS now, at least some of it.  What they don't get is that this is the big one - the dx of what I have been waiting for to try and gain perspective on what has been wrong with me for so long.  They don't even know me as a normal person, so now, over the past few years, they just think I have joined the nutty train!

There is no talking to these people - not at all!!  You would not even believe it if I told  you the stories.  They are extremely unreal people!!

What I am looking for is how to go it alone, with no family, no help, etc.  And if anyone has done this.

I know your intentions in your answer are sincere, but seriously, there is no help for telling my family any of this; it would only add to my stress, which I do not need now!

Thank you very much, and Peace............... !

[supermum_ms]

Hi sorry i haven't spoken to you before, i do hope you accept my involvement here :-)

I see family as one of our greatest weakneses, they can cripple our emotional frame work like nothing else can but because they have that power over us, i feel that its our job to lay down the boundaries but we need to know the truth, worts and all. Do not assume that they know anything, lay it out in real terms so a baby would understand what it means for you and what you need from them. Educate them, be honest with your emotions, own them completely and be steady enough to pull them into line when they do the wrong thing.

This disease will understandably rock your families foundations, you cant run and hide, it is here! You need to make the choice of if your going to let them run away from this reality or help them face it head on. If you choose to help them face it, then i'd recommend a family meeting and ready or not you'll have to be the leader of your little tribe. The first thing you need is to know what they really know about MS, they may know nothing but myths so you'll need to be ready to explain exactly what MS means and what its done to you.

Examples help put it into contex and it may help if your clinical in your explanations, giving the what hapened with the why and if your able to, i'd also give them the how it feels to be in your shoes when its happening so there is no missunderstandings of your reality, be clear. The second thing would be what you need them to be doing because you can't even assume they would know what you need, especially if you haven't told them exactly what that is, so again be clear.

I wish you well with what ever you deside but just know that nothing will change unless you gather your inner strength and make it happen!

Hugs...........JJ

[lilly608]

Thanks so much for responding; this is the type of support I believe I really really need right now.  And of course I don't have the energy to go out and see my counselor.  Hmm.... wonder if she would do phone sessions......

alienshadow:  my husband is most definitely supposed to be stepping up to the plate; we have been to counseling for this before with him swearing that he would be better, but he is not.  He has some bad back problems and cannot drive for extended periods of time.  However, I have been there right beside him for the past two years making his doc appts., surgery set ups, pain appts, SSDI stuff, disability stuff - you name it, I have been there for him (even serving his meals in bed post-op).  I absolutely did not do this for him so that he would reciprocate; I did it because I love him and this is what partners do for one another - or so I thought.  I am at a loss; he comes and goes in the car when it is something HE has to get done.

HVAC:  I understand your saturation comment, but with my first go-around with these people (parents/siblings - I have four sisters and four brothers), they just left me hanging; barely a word.  As I said about partners, I believe that this is what families are for as well.  I think we should be close enough - even in a cancer situation - that we would know what to say; I know I would know, and I would care, and I would be right there.  I just can't help myself; when my Dad was in the hospital last year, I just made it my weeks' mission to be there for him and my Mom - period.  I absolutely do not do this for accolades or the like; I just really feel and know how it is to be in a health scare and I don't want anyone to have to go it alone.  As far as my husband is concerned, it has nothing to do with what to say.  A while ago we went through some counseling for this very reason - after my surgeries because he was nowhere to be found during all of those either (and I mean mentally nowhere to be found).  We made promises during counseling:  that I would stop doing what I was doing, and that he would be a husband to me - in every aspect of the word.  He said he felt awful for not being there for me during that health scare, and would never ever make me feel alone again.  I have kept up my end of the bargain; he has not.  I am all alone.

So, as you say, I now reach out to all of you - perfect strangers!  But since we all have this in common, it is my outlet now.  Don't get me wrong, I truly appreciate all of you, but why can't my husband be there and how do I go this alone - getting downtown first of all, then discussing treatments, then going back for treatments, then the awful (from what I hear) first few treatments, etc., etc.?  I do believe he will take care of the children this time - ages 20, 15, and 6.

Lastly, however, I really wish he would impress upon my children what I am going through (but I guess he can't when he won't understand - aahh!).  I hosted TG dinner for his family, which I SO enjoy doing (or used to when I was healthy - hmm... when was that?!)  However, after being on my feet for 14 straight hours, my legs just gave out from under me - literally.  I was in the kitchen, just about to go to bed after cleaning up everything on my own.  My daughter and niece were in the family room sleeping.  Well, when I fell, they thought it was bc I was drunk!!  Granted, I had a couple glasses of wine, but this by no means caused my legs to give out.  I called for my husband and he and my daughter helped me to bed - mind you, leaving my robe and slippers on and barely covering me - jerks!  He really, really needed to explain to my daughter and niece what the hell just happened; my niece got up the next morning laughing about it!

This is what I am dealing with, on top of everything else!  I will take comfort in this forum; you are all so great and helpful.  I also hope that I can give back to those that have questions.  You all are now my family!

Thank you SO much for reading; I just have so much going on......... Lilly

[HVAC]

Lily,
  I am sorry. Family and friends sometimes react strangely. My husband still does not go to appointments with me. He would not talk about it. I found out he was talking to a woman with MS at work. I thought he did not care, he did, does, but does not what to say or do.

  My brother was silent when I told him, but it was because he did not know what to say. He and his wife thought I should go on as usual until they saw me have some severe symptoms.

  This is scary stuff and sometimes people say stupid stuff. LIke what do you say to someone having cancer, or a death in the family. I have said real stupid stuff with out meaning to.

There are literature from the NMSS like "You look so good".

It is human nature to get to a saturation point with hearing about other's medical issues.

What I did was get one person on the forum at the beginning I could talk to on Private messages. We supported each. I also joined a local MS Support group with people I could talk to.

Alex

[alienshadow]

Lilly I personally do not think its in your head. We all know when our bodies are off! If I were you I would try to find a relaxing place and get away from all the negative feed back in your life. That only adds fuel to your misery.. As far as dealing with it alone yeah you could try but I would try to find a group that could relate with me. Once you do that you can talk and people understand exactly what you are saying and going through. I know its tough especially when family says Oh be quiet its in your head! You need to tell your Hubby to step up to the plate or hit the high road if he cant support you now he sure as heck will not in the future! I can only imagine sitting there with no support when a Dr comes in with good or bad news.. I hope you find that this site is very supporting and you will make many friends here who will not judge you or tell you its in your head!