Boy is this a hot topic. I have visible symptoms but I also have invisible symptoms. I was talking about my invisible symptom at a MS support group of all places and the co-chair apparently didn't believe that my symptom was real because she doesn't have it. So other MSers do not want to believe invisible symptoms just like everyone else.
She told me to stop taking my medication and the symptom would go away. She doesn't have my symptom so she assumed that my symptom was not real. I realize that some people can be insensitive but she has no business being a chair of a MS support group if she cannot give support.
I'm sorry to hear you've had this problem at your MS support group. I wanted to tell the folks with people close to them who don't understand, that the MS support group is the most likely place TO get understanding! Mine certainly is. Even before I attended this group, the 2 I attended in other cities accepted me right away and didn't make any assumptions re my invisible symptoms. I've always felt a comfort being "part of the group". I wonder if it would be helpful for you to talk to your co-chair one-on-one. Also, there should be a liaison at the Chapter office that you can talk to. The co-chair needs to have a little education on the subject and also the manner in which he/she speaks to attendees.
Its something a lot of us know all too well :^(
It really sucks, but for me, I had to find a way to make myself realize that there are very few people in my life that are even capable of understanding, and comprehending the symptoms.. and I have to keep reminding myself that I cant expect any understanding or acceptance from these people...
it may not be their fault.. but I had to get to a place in my mind to make this realization..
I kept burning myself out trying to make these people understand... but theres no sense in banging my head against a wall..
im sorry if I sound harsh.. but this is the way I had to deal with it :^(
interesting though... your post made me realize something...
in the past ive been able to do many things at once.. no matter how many distractions!
but recently, I have to do one thing at a time..
Usually ill sit on the couch with my laptop, and watch tv.. but anymore, I have to mute the tv, to even be able to read a webpage, or scan thru my emails.. I wasn't sure what to make of it.. but it seems like everything is that way now...
when im driving, and I come up to an intersection, I have to turn the radio way down, or off, otherwise, I feel like I don't know whats going on around me..
I never associated it with the cognitive problems.. but it makes sense!
I highly recommend some sort of counseling or therapy... there HAS to be some sort of outlet available.. and is sure wasn't coming from anyone in my family!!
sorry if I'm not more help.. but if nothing else.. YOURE NOT ALONE!! :^)
So glad to have this place to hear how others are feeling. We have each other even if we are not understood by friends and family. When I read these posts I always feel a connection and not as alone anymore. I often find myself saying "I feel like that too". We aren't alone but darn it sure seems that way in our daily lives sometimes. My boss was complaining about how weak his legs felt one morning after walking 6 miles the evening before. He is 30 years older than I am. He made fun that he knows he's getting older but he shouldn't be weak from just walking. I realized quickly that he had know idea how bad I was feeling at that moment. I was wondering how I was going to have the energy to walk across the parking lot to my car after work. All I had done was sit at a desk all day but my legs felt like they would buckle. I did make it to my car like I always do but when I got in I started crying. I forget that people cant see how horrible I feel inside. The pain and exhaustion is so real to me it seems that others would be able to see it. They don't. As long as I am still going and doing nobody knows how much effort it was for me to do something that's so easy for them. It was a reality check. Thanks everyone for being the ones I can turn to when nobody else gets IT.
I have been reading many responses and I am glad I am not the only one that faces family denial. I even see some of the symptoms that my friends and family say its because I am getting older. Inam a fighter but sometimes the fight is knocked out of you. I am not glad I can just say what I feel and have people understand. It's a great forum.
I can so relate, my husband and sis just dont understand sometimes.
They think Im just trying to be lazy!
Not excusing how people act, but I think our family and friends are in denial. I have the same issues in my family that you are experiencing. When you are the person who did everything for every one and then you fall from the "superman" status to the person that needs help or accomodations, THEY have a problem dealing with it all. If your not wearing a cast they just dont "see" the illness. I just smile and feel sorry for them and pray they never have to experience what I have to.
I'm trying to learn how to deal with my mother's reactions to all of this. I know she loves me, and she hates when I worry so she remains calm, no matter what. Sometimes her calmness can come off as dismissive. I find myself becoming more fustrated by the time I leave her house. So I have backed off a little until I can figure a way to approach the situation.
If you live in Texas, Arkansas, Oklahoma, Louisiana or New Mexico and want to learn more about coping with this, please join in the teleconference called "Snappy Comebacks to 'But You Look So good'" on Tuesday, April 24th from 7:00pm to 8:00pm CST.
To register call 1-800-344-4867!
After reading all the posts on this issue there seems to be a pattern evolving. It is always about them.. There is no room for us. They make everything about them. They know what is really going on.
They know what is good for us. They see everything we are doing wrong. It is all about them and the stories they create in their heads. There is no room for us and what we say or feel. And we, want them to be with us. But they are only with themselves. The do not hear what we are saying.
They are all in a place of control. They want to control everything. They want us to be what they want us to be, not what we are. Maybe it is denial, maybe it is weakness. Maybe it is control. My family treated me like I was cinderella, or the runt in the family, gealousy was a big part of it. Both my sister and mother were gealous of me because my dad liked me best until about age eight. And they punished me with verbal abuse with no mercy. I was the manequin that they formed in the pose of the day. So I was not there.I was the object.
When I decided that I could never please them I gave up trying. I gave up trying to be friends with them. I decided what my definition of a friend was going to be and if they did not fit MY definition, there was no room for them.
I do not want to be friends with anyone who pushes me down so they can be bigger. It took me a long time to acquire self respect and once I learned how to respect myself I knew how to recognize when someone did not respect me. I stand tall in my regard for myself, and for what I accomplish every day and I no longer allow any abuse to my self. I refuse to be a victim, how about you?
Your insight on this is very true. I struggle with this every day. The thought that others can act this way can be quite depressing. However, I have found strength and confidence in the fact that I do not have a venomous personality as they do. In a way, I pity them.
Consider getting a neuropsych evaluation. They test everything, reading, math, reasoning, puzzles - a whole day of testing with a written report of assets and liabilities. Good to have for a baseline for when there are no new leisions but you feel you are functioning less. and you can wave the results. Most notable for me was to learn that i had depth perception problems and should not drive(that was more than ten years ago, think of all the lives the test saved)
with one caveat: Besides the testing is an interview with a psycharists (we, my partner and I, have learned that many psychiarists have subjective reasoning without substance so watch their eyes for any signs of preconcieved notions. They don't do the testing, good for that, someone else does.
Having that piece of paper(more like twenty pieces) is as liberating as a diagnosis.
I'm so very sorry. I've seen this behavior directed at other people I know. In my opinion it is the behavior of an individual who is either scared of change or scared of losing control of the thing or person they previously controlled. Gee, I sound like a psychiatrist -- I did stay at a Holiday Inn Express recently!
Don't you just love it when someone says, "You are looking so good!"? Most of the time I just snicker. Can they really see the cognitive stuff? I actually don't expect them to get it, but I do ask them to believe me. My latest flare affected my interactions with people (I didn't recognize it fully at the time) and a really good friend abandoned me. It was devastating. But those who really love you will take what you tell them at face value and won't judge you for it. Tell her again and make her do the research, so she knows without a doubt that it is the MS that is ruling you at times--that just because she can't see it doesn't mean it isn't real. You are worth it!
It is such a blessing to have these forums, because we get to talk to people who really understand. So here is my problem. I have this friend who was supposed to have my back no matter what, but when the emotional problems got bad, he thought I was just being a witch. So he would either ignore me or treat me like I was doing something wrong. But I still care about him. So I try to talk to him, but he insists on misunderstanding everything that comes out of my mouth. I try to explain it to him, but .... What do I do, folks? How do I get myself to stop caring what he thinks? How do I stop trying to reason with someone who won't listen? Somebody make me stop the insanity!!!!
I had no support from anyone for years, my family said i was seeking attention. Faking,lazy and the list goes on. So i stayed away and only went there when there was no choice. A few years ago i walked in the house with a letter from the MS clinic stating i had PPMS, the date i was Dx. It was signed by the chief of the neurology department. I layer it on the table and very nice like told them told were to go and walked out. I know have a relationship with my mother although there is still no trust we are working on it. Still have no contact with my brothers, there choice. It still hurts from time to time but i don't need them in my life. I am proud of myself and my world. MS does not come with a bandaid on the arm so they have nothing to focus on. There out look is if they can't see it ,then it is not there.
I was diagnosed with MS in 1993. I was in nursing school at that time and am now a prior LPN who never was iv certified!
What a waste of my time.
I am a mother of 3 - but no grandchildren yet!
I'm in Norfolk, VA.
NICE TO MEET YOU!
I have 3 girls 17,10.12 and a husband, I don't say anything about all of the hundrends of thing I feel constantaly, I don't think they want to hear it , perhaps they don't know what to say back, or I'm certain they think most of it is not true or a excuse to be lazy, I just wish I had a better support system. Not trying to be a downer, thats just how its working out for me, its ok, I am happy for MS connection, I don't feel alone and feel like I have a million friends that knows just what its all about and just what is up, with my silent symptons!
Hi Sarah - I am so sorry that you are feeling so frustrated and alone. Invisible illnesses are very difficult on family systems. If they know you in the "before" they are angry at the new you. This will take time and your should seek out a local mental health specialist that can help your family. Unfortunately, most individuals do not understand MS or other diseases that deplete your energy to the point where you need to choose between washing your hair or the dishes. You have a young, vibrant family that is out of sync with you physically. It probably is very hard for your girls to understand your illness and honestly, they may be deathly afraid of it because of what they may percieve it to be.
I would have a weekly ***** session your entire family where you all get 15 minutes to talk about (without any interruptions - none, zero, nada - just complete listening) what is going on in the family. Do not make it about your MS - you may feel like your being ganged up on. Just make it about the Family and how things are going. This needs to be a safe time, without judgement or criticism. This will just be time to listen to each other. This will give your an opportunity to let it out, each and everything your are feeling. This will also give them an opportunity to do the same. This should help deescalate alot of the tip toeing around your illness, but also be a time to focus on other issues in the family so it all does not revolve around you and your illness. This will take the family our of your MS bubble and bring them into a neutral zone where they are just a family trying to do the best they can. Hang in there - there are so many people feeling sad and alone like you.... completely misunderstood. Find someone that your can physically see and bond with that can help you through this. Blogs are great, but I just love face to face contact and feel it is so much more healing. Go out and buy the book, "29 Gifts. How a Month of Giving Can Change Your Life" by Cami Walker. It is an amazing journey that will have profound effects on your mind, body and your relationships. Many hugs to you! Lynn
My husband left my daughter and I for another woman who told that didn't have any real symptons. I was faking it to keep him feeling sorry for me. I was told that I was just being lazy, taking meds I didn't need, making up symptons to get him to feel sorry for me. It has been 10 years now but I'm not letting get to me any more.