I tell people I am disabled. I have more than one thing disabling me, though officially, I am on disability for migraines and one other category. My disabilities I think majorly define me because I feel very limited. I get migraines, I am easily stressed, I have major TMJ issues that limit my talking, I have P.O.T.S., interstitial cystitis, intense GERD and a pituitary tumor I'm concerned about, etc..
I remember feeling of little worth after I became disabled, because I felt I couldn't do much of anything. But my mom reminded me God defines value. I want to have ministry, even if it's a little bit, because I don't want to just be passing time in this world. And God has given me opportunities like on medhelp for which I am thankful.
Back when I was in elementary and mid school, before the migraines became chronic, I was COMPLETELY defined by my schoolwork. I lived school, breathed school, etc. Then when I had to withdraw from school in my Junior year, I went into complete shut down as I had nothing by which to define my life. I let the migraines just totally take over my life, and I basically spent the next 3.5 years on the couch. Then I had to wake up and get help.
I'd say that I'm disabled, because that's what I am. I don't try and gussy it up or make it worse than it is, but I am disabled. I'm lucking in that I don't really have a "before" and "after" set of memories as the migraines grew with me. So, to some extent I've always been defined by my migraines and their limitations on my life.
Recently, I've been trying to find other ways to define my life, but it's not easy. I'm finding some success in claiming that I'm an author, as I have self-published a children's book on pain, and have been officially rejected by one professional publisher. So that's something that my mom would call 'positive', even if I don't think that being disabled is negative.
Hi hun! I am very lucky. My hubby and only a choosen few know about me being on disibility. I have never even told my kids. Most everyone thinks, that I just decided to be an at home mom one day. I never corrected them. I was embarassed, that I could no longer be the independent women I use to be. Yes, everyone that is close to me knows that I suffer from Migraines, I mean how could they not. However, only a select few know the rest.
I was raised in a home with emotional and physical abuse. My father made his feelings know about my mother and us getting sick or injured. We were made to feel weak and in many cases the abuse was so sever, that he made others question our own sanity. Imagine being 6 years old and asking your mom if you are really sick or if it is just in your head. I have spent years with this shadow echoing in my thoughts. Every new doctor opens up those old fears and feelings.
So I guess for me, I can not define my life or who I am from my Migraines. I define my life by how well I can hide it.
Part of my reasoning is not my passed childhood issues. Some of it is my adult expeirence. I told a lady at church that I was disabled and just could not participate in all the activities she thought I should. That between family life and my health issues, I did not want to start something I could not finish. She, then later a few others, acted like I was lying. Just because my issues are not physically deforming or noticible all the time, does not mean they do not exist. I told them this and told them that if they were going to be in a position of authority in a church, maybe a little more sympathy or empathy was inorder. Even though nothing else was said, I can not help but relive and rethink all that people say and do. All that I say and do, for that matter. I try to call it reflecting, but maybe its a bit obsessing.
Its difficult not to view ones pain as a negitive aspect of life. Its difficult not to feel limited or defined by what we can or can not do. For me thats where distraction comes into play. I see you are a writter. I wish all the best on your book. What a blessing it will be to so many children and their families. To have such a positive and understand outlook. Good luck and God bless!
I feel similar to what SurgiMenopause said. I am on disability, too--and for more than one official reason. Migraines are such a huge part of my life that it's hard to define that fine line between letting migraines define who I am or not letting them. It's rather frustrating at times, because people without migraines can be rather disturbingly cruel. That has been my experience. I have actually been cruelly discriminated against for having this disability.