How do you deal with the emotional struggle that comes with Dystonia?

[RevWagner]

I am curious as to how you deal with the emotional struggles of Dystonia. Do you feel that you have a strong enough support group to help you deal your emotional struggles. How do you handle it when the people you depend upon the most misunderstand your emotional pain? How has faith helped you deal with your emotions?

[RevWagner]

I wanted to respond first to start this discussion. I have found that the docs can do an OK job at dealing with the physical problems with dystonia, but we are pretty much on our own to deal with our emotions. I think many are afraid of mental health doctors, because we have been labeled by some neurologist as crazy or faking. I have been blessed with a wife, friends, and Church that does all they can to be an encouragement for me. I know I am truly blessed. That doesn't mean that I never struggle, because I do. My faith has been a constant support. There have been meny times when it was the only reason I made it one more day.
Looking forward to your comments.

[beka]

Hi Rev. Wagner -
The Faith-Spiritual Post can be found here :
http://community.wegohealth.com/group/dystonia/forum/topic/show?id=...
But you bring up some good points. Medicine has always looked at the notion of disease as one of being physical in nature primarily, yet now doctors are realizing that there is a connection between emotions and disease states, onset, duration of symptoms etc.
When you are angry, I suppose that your dystonia is worse ? Yes ?
Doctors have always focused on CURE States rather than the care aspect, that's the job of the nurse ! To hold apatients' hand, to listen to them and to sit with them. Right ??? How often have you been in an office and the physician has just dismissed your emotional thoughts. Most don't even have the time to listen or really take the time to do so. You're still sitting there and they are out the door already !
It really is all unfortunate. This only adds to the constant dismissal of symptoms as being "not real " , psychogenic in nature etc. Along with dystonia being regarded as a non-diagnosable or non-verifiable disorder.
I find that dystonia for me is a constant struggle , a constant fight, but half the time I don't even know what I am fighting , the disorder, the idea of being mislabeled years ago, the symptoms, the DBS device, LOSS, grief, not being able to ride a bike and cycle. I truly think that dystonia has a very emotional component to it , not even being addressed by treating movement disorder specialists. Good mental health is a must in dystonia.
Yes ? Anyone ?

beka

[Cindyrella]

Yes, Yes and Yes!!!!!!!!!!!!

Dystonia indeed is a constant struggle, I really liked how you brought up the point of a bike. See for me, some things were coping methods to manage my mental health. The "Dystonia" took my methods away. When I begged for help to redirect to replace coping methods.....Well...........there was no redirection except to see a shrink...... I told them the same thing . Help me redirect...... Most do not know enough of Dystonia to have the tools to do that, except to offer a med. And that great if you want too. BUt what about those who don't . Yes, it is a constant struggle.

Great post and response :D

VR,
Cindylynn

[Cindyrella]

Faith has been my Rock. Without the hope, I am not sure I would be here sitting typing this message.
Moreover, my faith has helped me remove the "why me" and "what is the root cause" to okay, I have this, what is it I need to do to have comfort both in my body and my soul.

However, I can be fickle in my above thoughts. It is very easy when you are not having attacks to comfort and encourage yourself and others. But.... ( always is one huh?) when I have a "bad" attack, I slip and slide with the poor me's and the hate, anger and finding something else to blame always surfaces.

The good news usaully it is short lived and I snap back into myself. Also, at my worst "people" failed me. I have a handful of close friends that try to understand and some that really do ( those that have Dystonia). However, because of my faith I do my best not to depend on "people."

BTW.............Great question.. What do you do ?

VR,
CindyLyn

[Trudy]

I would have to echo as many have that for me without my faith I have nothing. Recently someone asked me if my diagnosis and this last year have been a test of my faith and I said no. Quite the contrary. My Dystonia has enhanced my faith, brought me to a new understanding of my faith. I don't mean to imply that this is always easy or the way I would want it to be but my life could be a heck of a lot worse. I do believe I am truly blessed.

I think I struggle with the grief. The loss of something at times intangible. I understand grieving the death of a loved one or even the loss of a relationship. How do you grieve for yourself when you are still here, just now different? There are aspects of me that I feel are gone now and it is difficult when some of the people around me, well meaning, will comment on how 'normal' I look that particular day. Like this will all go away and everything will be back to the way it was. I can see the same people the next day and they remark on how good I looked the day before; almost disappointed that 'it' (normalcy) didn't stick. There is a level of expectation that I feel with them that I can not meet. I try to gently explain that I am still learning the new me and the inconsistencies of my day to day life.

I do feel once I was released from the hospital and my insurance wouldn't cover the neuropsychological rehabilitation I was essentially dropped by my doctors. Or so I felt. Granted I bear some responsibility in my own health, however I do believe they have as much a responsibility to see me on a consistent basis. Especially the first year of my diagnosis. Neither my family doctor nor my neurologist made much of an effort to educate me on my diagnosis or on how to adjust my life. I have often likened it to someone who suddenly must use a wheelchair but has been given little to no training on how to get your body into it, how to manipulate it to get anywhere and how to adapt your body to get to the things you need. Granted this is an extreme example since I thankfully am very ambulatory, however my primary difficulties are with cognition. I try to keep my brain active but I would have truly appreciated more rehab after I was released from the hospital.

Because I do try to have a positive attitude and many have remarked that I haven't lost my sense of humor; I think friends and family sometimes are oblivious to the emotional strain. Plus, since I live alone when I do see them I am excited. I sometimes wonder if to them the emotional aspect of my Dystonia is like the pink elephant in the room that no one wants to talk about or if they truly don't recognize that aspect because 1) I have such a positive attitude and 2) they view this as 'getting better' on my good days.

For now I count my blessings that when my emotions are at a peak am able to turn to a select few individuals who listen, encourage and do what I need from them (if anything besides listen) and not what they feel I need. Recently that has been in the area of reassuring me that I am not crazy even if my neurologist did note in my records my Dystonia is psychiatric.

Great question! Sorry I was rather scattered in my response. I've had a lot of head pain the last two days but really wanted to catch up on what has been going on here.

Trudy

[Rosemary]

Very true about MD's not educating people with Dystonia. It is too bad and causes unnecessary angst.
Very true about the grief component.
Because my Dystonia was complicated by three failed surgeries (the surgeons dismissed the Dystonia diagnosis), my pain and depression is pretty bad. I am also single (divorced, my husband could not deal with symptoms before they were understood) and my whole family lives 3000 miles away, I ended up going on anti-depressants. One Cymbalta, also helps with nerve pain, the other, Remeron, helps with sleep. They have really helped me, and I strongly encourage any one having profound depression to find a good psychiatrist.

[Robyn]

I think this is constant struggle. No one can "really" understand. I do have wonderful few in my family that are always there for me. But it is difficult for everyone. I am still functioning almost looking "normal" at times, and yet the last doc appt. still threw out the words ALS, I'm about 5 years symptomatic into this, so that is not something I 'm worried about, and it "lingers", how can't it! I've been told I am a "conundrum" to the highest degree! Always knew I was special, LOL!! My faith helps mostly, and I still get hurt feelings from people who probably mean well. Anyone else relate?

Robyn

[sheep]

I dont have a support group i am lucky in the respect that my family are my rock & support, i guess the struggle for me is why cant i do the things i used to do and depending on wether its a good day or a bad day , Whats going to happen to me & my family in years to come.

My emotional pain i deal with on my own as i dont want anyone worrying about me or feeling down and helpless.

I have a head doctor (councillor) i call her that i talk too and she makes good sense, and have what we call here in the UK an open door, where if things are getting tough i just pick up the telephone and pop in the surgery and see her for an hour or so.

Faith , right or wrong i have no faith, but think those that do have an excellent rock to lean on is the best they can get and should continue to do so.

[scotsirishrn]

I have a very supportive family and a husband who is a nurse. He is very compassionate and never makes me feel anything less than beautiful. I think he is biased but I love him for it. Prior to being diagnosed with dystonia was much worse emotionally. I thought I was losing my mind. I thought how can my head lift off the pillow by itself. Crazy eh! Even my chiropractor told me it was all in my head. Finally when I saw an article on the front page of my local paper about a woman with dystonia, I knew that was it. The ironic thing is that I happen to know her. Not well, but we were acquaintences. Finally I was able to put a label to what I have. I was a bit hysterical at first and at times I can still be angry. I can't stand it when people at work feel sorry for me. I used to snap at them. Then I realized it doesn't do any good. Now I educate them about dystonia. I am able to talk about it freely. That way they understand what it is that I have. Not just a stiff neck. I think I tend to be more emotional when I am in pain. But who isn't. As far as faith goes, I have faith but I don't rely on it for helping to cope. I am a wee bit stubborn and I just keep on trucking. I think humor also helps me. I joke with people and say that I am a numb skull, product of denervation surgery or a twisted sister. If I couldn't laugh I think I would lose it. Anyway, thats it in a nut shell.

[Elaine]

I have no support from anyone. And I'm feeling it.

I have support in the sense that my husband does the house work, etc....
I feel like I'm dragging him down with me. And no one supports him either.

My Movements are better if I rest.
But am likely getting the Fibro dx....so have to go to physio.
Which brings on bad movements.
No matter how hard I work , I can't win.

I don't fit anywhere and I feel that no one really cares about me.
I'm not depressed. I'm more disappointed and angry.

Elaine

[Rosemary]

Elaine: I am so sorry you feel that you don't fit any where. All other Dystonians, I am sure, support you. We may not know precisely what you are experiencing, but we too have faced challenges. I wish better roads ahead for you.

[Elaine]

Rosemary. : )

xo

Elaine