Do You feel like a Burden by having dystonia ?
An Unusual topic but one that warrants a bit of focus. "Burden of disease" is a term that captures the frequency of the disease (such as the incidence and prevalence) as well as how it affects other aspects of the health of a population. This may include the negative impact of disease on longevity (such as years of lost life), morbidity (pain and impaired health-related quality of life), and economic consequences of the disease (such as direct healthcare expenditures in caring for the disease and indirect costs related to lost income from premature death or disability). Therefore, one needs to take all of these aspects into account in order to understand the true magnitude of a disease's burden.
Do you feel like you carry the burden of dystonia ? Does your family ? Your friends ?
Let's Talk.
beka
Do you feel like you carry the burden of dystonia ? Does your family ? Your friends ?
Let's Talk.
beka
Tags: burden, care, disease, dystonia, feelings, impairement, life, management, of, pain
Replies to This Discussion
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Permalink Reply by Elaine on -
I feel like a burden to my immediate family and to my husband....who has picked up all the slack.
My "friends" and most other family, don't seem to care and have gone on with their lives without me.
No one helps us out. We're on our own.
It's affected us financially. My husband works full time and I took care of everything else.
I always shopped sales. Cooked home cooked meals. No more sales and a lot of take out and prepared foods
cost a lot more.
Social life....we have none. Our daughter who is 10, loses out because either I can't or my husband is too busy
to do things with her like we did before.
Elaine
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Permalink Reply by BDrake on -
Elaine,
Your story sounds excatly like mine...only dystonia has now taken a toll on my marriage as well. We're still together but the burden is getting so heavy for myself & for him that we take it out on each other & the stress & frustration shows in how we deal with the kids.
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Permalink Reply by Elaine on
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I think it's taking a toll on our marriage as well.
I don't think we'd separate or anything like that.
But we sure are a lot snappy with each other.
Next time a Dr says it might take a long time for dx ...or may never find out what's wrong...
I plan to ask them if they'd be willing to accept that for themselves.
I was to meet a reporter this morning. She didn't show.
It's a long weekend here in Canada. And she "forgot".
Didn't phone or email.
It's really hard for me to get up early but I did.
I have a few other complaints that I'll spare everyone. lol
I'm not happy with people today!
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Permalink Reply by MichelleSchwinger on -
I definitely feel like a burden to my husband although he will swear UP and DOWN I am not. I don't work-- the financial burden is all on him. When his friend's S.O.'s call or text me to make plans, I avoid it. Plans almost dare my neck to fall over.
It's the same with my friends/family. I'll make "plans" but often have to back out the day of. Most of the time people are considerate, but I feel like they HAVE to be tired of hearing it by now. And sometimes I'll be on the phone with my mom/sister/friend and hear something like, "Oh on Friday night we did this. Wish you could have come" "You know we/I would have loved to come, why didn't you ask?" "I didn't want to make you feel badly if you couldn't come." WELL, DID YOU ASK? I always want the opportunity to say no, but maybe that's asking a lot.
My other least favorite line in the world, used often by family, "You were OK to do {insert thing here} yesterday, but you have to cancel plans today?" I KNOW my family "gets" Dystonia, but I don't know if they understand truly what it's like to have it. Some days, I am 100%. The very next day, I could be 20% or less. That's tough on me too, because I love being around people!
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Permalink Reply by Deanna on -
Thank you for bringing this up...just the fact you did, helps me 'feel the hidden tears' and realize, its going to be ok.
My husband would do anything for me. I though, being 'super woman' for so many years, worked for me being a Navy wife with husband in and out to sea, it made me too strong and independant. Dystonia- has been the poison to take the strength from me completely.
Michelle, I really could ditto your reply. My mom says my siblings see me as normal so they don't see the Dystonia or accept the fact. I used to be like a hummingbird at church, talking to everyone and helping with the 1st Sunday lunches, getting the elderly coffee, cleaning up, etc. And now, I don't. I feel like a egg, anything could make me feel worse, crack.
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