People just don't get it... Is it just me?

[dkakavas]

So people will say "Oh, he acted wrongly due to his bipolar condition". Or someone w/ cancer goes through chemo behaving oddly "it's understandably as they have cancer". No one realizes what MS does to folks. They just look at the person and say "they look fine so that means they must be OK" so there is no logic to their behavior and they just must be out of luck. So there are poor assumptions made to MS folks around the globe.

Another example: People with Alcohol problems. They can do and say things they don't mean but people know it's because of the drinking. All of this does NOT make any bad action excusable, but there is a reason for the actions. When the brain is impacted, people change and can act / behave differently. My friend Joe was in a car accident. He had brain damage/lesions. He is OK but gets into fits of anger at times because of the damage. At times, there is no difference between his damage/lesions and the damage that happens to MS'ers brain. People who go through strokes typically have brain damage which will affect them mentally and physically. They can act out at times but folks understand it's because of the stroke. Well when I had my first brain MRI, the radiologist reported" "This patient appears to have had a series of strokes due to the lesions/damage found on his brain". OK, what is the difference between how a stroke victim acts as opposed to a person w/ MS? The MAJORITY of the public does NOT get it.

In summary, people with MS have obvious mental & physical issues but no one ever says, “That must have happened because of the disease". I hear this all of the time with MS folks at my meetings as the majority of the people are clueless in regards to MS and its effects. And with a reason, there is normally some ability to understand... Still, it doesn't make a bad action right of course. That's key. Sadly, I guess when we reach ambulatory care and with complete memory damage, then folks will actually get it...

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Jules A]

Its not just you and also not just MS. My guess would be that most with the diagnoses you mentioned also feel misunderstood. Its hard to emphasize with something you don't have.

I personally have a relatively low threshold for anyone acting like a butt with the exception of as you mentioned traumatic brain injury and in those cases I would expect their caregivers to monitor and shield them from doing things that will harm themselves or others.

Lastly I'd urge everyone, MS or not, to really consider what is within their control and attempt to learn coping skills and grow rather than hiding behind a diagnosis as an excuse to behave badly, except in the cases where brain damage is actually responsible, which my guess is less than we might assume.

[loopey]

I don't think it is just bad behavior. Depression is difficult for others to understand or deal with. I start crying and can't stop sometimes and I think my dh thinks I am wallowing in self pity. I feel sad and it affects him and I feel I am ruining the day for everyone around me. When I try to explain things I know he can't understand and I get frustrated. I just made an appointment to talk to a professional who will be able to listen without a personal attachment.

Sometimes I am sad, afraid, sick, and unable to cope. Sometimes I feel ANGRY. Not at anyone, at MS. Those are the days that I do my best to NOT let the anger change my behavior.

[Jules A]

I don't think it is just bad behavior. Depression is difficult for others to understand or deal with. I start crying and can't stop sometimes and I think my dh thinks I am wallowing in self pity. I feel sad and it affects him and I feel I am ruining the day for everyone around me. When I try to explain things I know he can't understand and I get frustrated. I just made an appointment to talk to a professional who will be able to listen without a personal attachment.

Sometimes I am sad, afraid, sick, and unable to cope. Sometimes I feel ANGRY. Not at anyone, at MS. Those are the days that I do my best to NOT let the anger change my behavior.

Kudos! I'm a huge fan of counseling for everyone expecially those of us with a horrific diagnosis like MS. Having someone objective to listen and offer coping skills and suggestions is wonderful Please keep us posted.

[Avlshrink]

That depression thing...

I don't think it is just bad behavior. Depression is difficult for others to understand or deal with. I start crying and can't stop sometimes and I think my dh thinks I am wallowing in self pity. I feel sad and it affects him and I feel I am ruining the day for everyone around me. When I try to explain things I know he can't understand and I get frustrated. I just made an appointment to talk to a professional who will be able to listen without a personal attachment.

Sometimes I am sad, afraid, sick, and unable to cope. Sometimes I feel ANGRY. Not at anyone, at MS. Those are the days that I do my best to NOT let the anger change my behavior.

It's a good decision to see a counselor, and have an impartial ear...But I AM a counselor, and just went through a 4 day period of a depression-like feeling coming out of no where...it hit me like a ton of bricks, (crying at the drop of a hat, feeling there was no point to living, and that things had always been this bad and always would be.)

I did everything I tell my clients to do: journaled, meditated, exercised, even did some meditation coloring book work...nothing seemed to work.

On the 5th day, I woke up, the weather had improved, and all those feelings were gone--poof--and I couldn't believe I'd been feeling that way. Nothing bad had happened in my life, and nothing good happened to make it end. The depression hit just before and during a big storm front, so I'm wondering if barometric pressure had something to do with it.

So, I guess my point is that this disease can hijack your moods without warning. Pick a counselor who has had some experience working with folks with MS. You might even be able to find a counselor who has it...in my little town in NC, there are 3 of us.

You don't want someone unfamiliar with the disease deciding that you have a mental health diagnosis when it's very possible that what you have is a normal reaction to an abnormal situation...having MS.

I hope you find a compassionate, knowledgeable therapist who can support you through this.

[Jules A]

It's a good decision to see a counselor, and have an impartial ear...But I AM a counselor, and just went through a 4 day period of a depression-like feeling coming out of no where...it hit me like a ton of bricks, (crying at the drop of a hat, feeling there was no point to living, and that things had always been this bad and always would be.)

I did everything I tell my clients to do: journaled, meditated, exercised, even did some meditation coloring book work...nothing seemed to work.

On the 5th day, I woke up, the weather had improved, and all those feelings were gone--poof--and I couldn't believe I'd been feeling that way. Nothing bad had happened in my life, and nothing good happened to make it end. The depression hit just before and during a big storm front, so I'm wondering if barometric pressure had something to do with it.

So, I guess my point is that this disease can hijack your moods without warning. Pick a counselor who has had some experience working with folks with MS. You might even be able to find a counselor who has it...in my little town in NC, there are 3 of us.

You don't want someone unfamiliar with the disease deciding that you have a mental health diagnosis when it's very possible that what you have is a normal reaction to an abnormal situation...having MS.

I hope you find a compassionate, knowledgeable therapist who can support you through this.

What you describe possibly sounds more climate related than direction from MS? I love that you did the non-pharm interventions and my guess is they probably did help on some level. Light boxes can also help for folks whose moods are seasonally effected.

Although a MS diagnosis, or any other health condition, is important for a provider to know I'm not sure it makes much of a difference in how someone would be treated. Whether the cause is directly MS related or not the treatment options are fairly similar.

[Skidder]

hmm

I get as frustrated by the perception people have of MS as much as the PPMS itself. We see commercials for meds for relapsing types, showing women getting out of the pool and looking healthy. People don't see the negative aspects. They don't see the video of Annette Funicello near the end. As a result, they don't get that it can be very destructive and there are those of us who do need special accommodations. People approach it as if you just need to get over it. Others spend 5 minutes on Google and think they are doctors who can cure you, and act like you gave up if you don't follow their advice.

There's another side where I view each challenge as an opportunity to learn. "How can I accomplish this task given the conditions that exist?" I will ask for help when I need it, but get annoyed when someone constantly tries to do everything for me. I want to tell them to go play in traffic, but it just tells me people need more education and knowledge of this disease. They're guessing about what they should be doing. I don't hold it against them, but it is annoying.

[JerryD]

I agree with you, Skidder! Adding to the myriad of problems associated with this MonSter, people DO NOT understand that MS is not curable, at the current time ! And the drug companies confuse the public perception by portraying MS as comfortably treatable, which can't be further from the truth! I have been pointing to the TV commercial about Tecfidera as evidence of this. The general public has no idea of the reality of life with MS because they are presented with images of nice looking people swimming, going to the fair, smiling and playing catch, etc. This is deceitful and patently false. I wish this was not the case.

[hunterd]

I agree with you, Skidder! Adding to the myriad of problems associated with this MonSter, people DO NOT understand that MS is not curable, at the current time ! And the drug companies confuse the public perception by portraying MS as comfortably treatable, which can't be further from the truth! I have been pointing to the TV commercial about Tecfidera as evidence of this. The general public has no idea of the reality of life with MS because they are presented with images of nice looking people swimming, going to the fair, smiling and playing catch, etc. This is deceitful and patently false. I wish this was not the case.

skidder
JerryD exactly, I wish there was a way to educate the general public so they knew just how difficult it is!

[loopey]

Counseling

I did go to talk to a professional. Though she doesn't have MS she does have a background in neurology. She told me that my feelings were normal and that I didn't need medicine for depression. Even my anger is normal. I have started meditating by downloading a program to help with it.

What someone said about the weather is absolutely the case with me. Despite feeling mentally (not physically) better when it is changing from sunshine to cloudy and rainy I feel down again. I want the best life I can have with this horrible, challenging disease now. Before I just didn't care if I died.

Having a professional to talk to has made a world of difference for me.

[Skidder]

Live well

I try to be fair and haven't forgotten my views about MS prior to being diagnosed. For me, it's important to see the situation through their eyes, not my new perspective. I try not holding others to higher standards, using my prior self as a reference. I often think it's harder on those without MS than for me. I cherish those without MS who really seem to grasp the situation and have an inate ability for "getting it". We all know how tough it is to put what we're dealing with into meaningful words. The outside world doesn't see any change, but we know how much harder it is over time. They don't see it when it goes from 20 minutes to get ready to taking 2 hours. They see the finished product, not the preparation. Is it fair to hold them accountable for knowing what happens during those 2 hours they don't see?

I think we're a bit self-centered. We want people to be aware, but we don't want to be constantly reminded. We want them to have the product literature and instruction manual, but we want them to read it on their time versus asking us to spoonfeed them the answers. We want them to understand and react the way we prefer, but without detracting from the enjoyment of the moment. We want to be treated like regular people, but others to know when to step in. We want a normal life, and others to help create the illusion that it is, but without drawing attention to what they're doing to make it appear that way.

I can't change everyone, but I can change a few. It doesn't help anyone if I'm a jerk. Given what we deal with, smiling and having an open discussion with understanding, even when we don't want to, is relatively easy by comparison. How I deal with this will help others in similar situations and sets an example. Sitting around full of self-pity is a waste of a good day that I can't get back. I encourage people to have fun with it. Throw me stuff and laugh at me as I try to catch it. Decorate my walker, cane, and other stuff so it looks stupid. Others need the relief as much as we do and laughing never cost me a dime. "There's no compelling evidence that life is to be taken seriously."

**Edited by moderator in compliance with Guideline 4.**

[JerryD]

Not to put too fine a point on it, I feel compelled to push the 'smiling, catch playing, diving board diving MSer persona ' to the side and 'keep it real'! I am simply saying that we, MSers, take a smash in the mouth every minute of every day. I will not say 'thank you, sir, can I have another' ! If you are an MSer that thinks that you must smile your way through this because the truth of MS will offend others, I say 'go pound sand' ! I am simply 'calling them as I see them'!

[jreagan70]

Beautifully put, Skidder. Except for one thing:

I can't change everyone, but I can change a few.

No, you really can't. Except by force, no one can change anyone but themselves. At best, your illusion that you're changing someone is nothing more than lining up with someone who is already amenable to change. Those people you think you're changing are really changing themselves. You can't change anyone.

I wish there was a way to educate the general public so they knew just how difficult it is!

Why does the general public "need" to be educated about how difficult life with MS is?

There are 7 billion people on earth, and the response of the vast, vast majority of them is:
"You're miserable? So what? I have my own problems. What are you doing about mine?
"I'm not interested in your problems any more than you're interested in mine. I'm not responsible for you any more than you're responsible for me. I didn't give you MS, so why are you giving me grief about it?"

So many of our fellow MSers complain about being isolated. Deciding that everyone else has a problem that "needs" to be fixed is an incredible act of self-isolation. Other people "needing education" is not the problem. No one owes it to us to "get" us.

Is it any wonder why people would rather help mangy puppies instead?

[Skidder]

hmm

I agree you can't change someone. For most, this is more of a curiosity. However, if I'm approachable and keep myself in check, I won't drive away those who do want to know more. They won't necessarily be changed, but they will be educated. The only change in others that I'm referring to is education, not behavior. The first step is getting them to understand how serious it is and it's not a pool party.

A good analogy is my working with leather. People think it's a quick deal to knock something out and regularly ask if I can make them x. If I invite them to come make something, they quickly realize how much time and energy is involved. They see it's not an hour long effort and can take days or weeks. Are they going to start doing leather work? Doubtful. Will they know what they're asking going forward? Yep. I haven't modified or changed them, but they now have the knowledge and know what's involved.

Many will distance themselves from me and the situation. That is perfectly acceptable, BUT when someone brings it up, or it comes up in conversation, they have the knowledge necessary to inform others. That's how it all begins.

[hunterd]

jreagan, I had never thought of it that way. You have given me a little something to think about. Thank you. I do not suppose that there will ever be an end to the "I wish you and understand this" crisis. Not until there is a cure for every disease and illness known. And when that happens, something newwill come along.