I as a child endured a some horrible events. It's hard to talk about, but I will very briefly state so that we can move on to how this vision of me by family and friends now greatly affects my disability.
So, why do I say this was part of the start of it? Well, it wasn't the start - even before this as a small child, I was told I was the strong one and would be able to handle anything. This enhanced this feeling - I was told I was the strong one and a survivor while my sister couldn't handle it. She needed help, but I could overcome.
In the meantime, and still, other members of my family, didn't get this kind of inspirational "go do it" talk. They got "oh poor you" and financial assistance and all that jazz. When I asked for help in this way, no, I got - You are strong and a survivor and YOU will make it. They were right.
Let me say CLEARLY here that my now husband - INCREDIBLE - was not like this. He told me I was strong, yes, but he comforted me and HE TOOK CARE OF ME and STILL DOES. He goes FAR out of his way to do so. His family is much the same towards me. They also see me as very strong, but they also give me comfort. Yes, inspirational too, but comfort and help.
Let me also say that I have friends that are the same. I have friends that treat me as my family does and friends that are comforting and helpful.
LET ME ALSO BE CLEAR - MY FAMILY LOVES ME (and not all of my family is "inspirational talk only" by far as I have a vast family) - MY FAMILY WOULD GO TO THE ENDS OF THE EARTH FOR ME IF NEEDED WITHOUT QUESTION THEY WOULD WALK THROUGH FIRE!!! I am NOT putting them down here - I am merely stating that some members of my family - a lot of them - see me as SO strong and such a survivor that if I am at my wit's end that the strength will boil up and I will overcome. AND THEY ARE RIGHT so much of the time. While others falter and lean on others, I do stand strong. AND I AM PROUD OF THAT!!!
So, here we are, and my disabilities have put me into a very bad spot. I am the Strong One, I am the Survivor. I Shall overcome. Well, as many of us with chronic illnesses know, there is no cure. There is not cure for any of my disabilities in fact - they are hormonal or neurological problems for which there is not cure.
That of course does not mean that we cannot live a good and fruitful life. We have to MANAGE our disabilities. Unfortunately for me, recently - over the last few years, my disabilities have become debilitating. So much so that I am now on disability from work. Which is so sad and hurts.
I appreciate everyone of my family who is inspirational to me telling me I am strong and a survivor and will overcome.
I am appreciative of all of my friends who are the same.
I have had a hard time with some who see me as the strong one and the survivor believing that my disabilities will not be CURED. That I will not overcome and be back to me the way I was before. Because of this, and because of my constant pain and difficulties, I have had as MANY OF YOU HAVE had to endure LONELINESS as people draw away. As people want the "old me" and don't like dealing with the "new me" - even when the "new me" tries so hard to hide my disabilities - although some cannot. They don't want to talk about it - they just want the old me and are sure that I will with doctors overcome and be back. It's like they feel like I'm not being me because I cannot be strong all the time and get the feeling and even have heard that if I just TRY HARDER I will overcome.
We all go through this - we all talk about it and listen to helpful accounts and suggestions in conferences during Invisible Illness Week. These ARE so helpful. (by the way this past September's and even older year's "conferences" can be accessed as I do and listen again to helpful tips at http://www.invisibleillnessweek.com at the virtual conference tab.)
I have asked for help from those who see only the Strong One, the Survivor, and they say yes, of course. And when the help comes, it is in the form of not what I requested, but an inspirational speech of how I will overcome this and how strong I am and I will get better and just have to believe it, etc... I have broken down and cried and asked for specific help and I get much the same. Now, I do get rides when I need them and help and support. Which I love. But sometimes you just need HELP!
I am the Strong one, I am a Survivor. And as my grandmother said "This Too Shall Pass" and I will have better days and I will cope and will find my way back to a better life.
Right now, I am sad - I am in mourning. I go from deep sorrow to anger to determination to overcome and back again.
I ask my husband to help and he drops everything and does anything for me. He gets it!!! You know?
I have family members and friends that I can go to and talk with and they listen through it all and don't try to tell me I'm overreacting or need to be strong. They are just there for me. I have friends that although it's difficult with their busy lives, come over and spend what time they can with me.
But it has been ingrained in me that I am the Strong one, the Survivor. So, I don't ask them to help me with dishes or the laundry or shopping for the holidays or the many things I need help with. Because I have bought into what has been told to me all my life. That I can do it.
An example, I had a medical bill from the early 90's when I was uninsured for a non-voluntary admission to the psych ward. Later, when they figured out it was my thyroid that was causing the symptoms, all that disappeared. Anyway, I didn't have the means to pay. And I was a bit angry because I hadn't asked to be in the hospital. Well, years past and it ended up going to a law firm for collection and I was sued and lost but remained unpaid. Interest and other grew on it but I couldn't get it paid with other bills, kids, etc... In October of this year, I received a letter that I must appear in court in November to give financial information and the judge stated "it will be no undue hardship on Elizabeth to appear." Well, little did he know - I couldn't drive, I with my migraine would not be able to handle, NCS would cause me to faint, driving with my Essential Tremor was a bad idea, my husband worked that day - really he works everyday - and with constant migraine, narcolepsy and medications - I wouldn't make much sense. AND - I was on disability so the financial information they were asking for wouldn't show my true financial state. I asked a family member to help me. This person came to my house and gave me a go-get 'em speech but said that would help me get an attorney to appear for me or would appear themselves on my behalf and not to worry. So I didn't. Then, came two days before the court appearance and nothing had been done to help me - and the day before when asked by my husband was "she's strong, she can handle it." Well, as it turns out, no I didn't go to court because I couldn't - but I AM STRONG and my inner strength and adrenaline drew up from me and I called the law firm and took care of it - even got all the interest removed. I took a distribution from my 401K and got it paid and no court date. I did this myself.
What happened? Well, I did it - I was strong and I did it - I also because of the adrenaline, suffered from worse pain for the next 4 days. I truly needed help, but in the end I did it with my strength.
Which is why I say I do buy into it. I don't ask for much of anything anymore. I do hear a lot of "if you need anything, let me know" and I lay my burden on myself and mostly my husband - poor thing.
What I want desperately to hear is not "if you need anything, let me know" - but someone to specifically offer something specific that is help for me. SPECIFIC - not the line that makes me feel bad if I do call and ask for something. I've heard this same thing during the invisible illness week conference - so I KNOW that many of you that suffer chronic illness deal with the same thing.
I know also that strange as it may seem, that so many of us with chronic illnesses ALSO are incredibly strong people - we even feel badly asking for help.
So, I think I am not alone in the Strong one image, the Survivor image - and it is so hard to ask for help - especially when it is returned with an inspirational speech rather than the help you asked for.
I think that many are in worse shape than I am. My children are grown - or nearly - my youngest a senior in high school - so I don't have issues of needing rides to or pick ups from soccer or whatever. Or babysitting, or whatever. I also am not in school anymore so I don't need the help dealing with exam weeks or studying. I am not single and have such a loving and supportive husband so I don't have those issues - although the burden on him is also growing and heavy - and HE TOO doesn't ask for help EVEN FROM ME! He needs help too.
I don't know how to end this - I've given some background that is really private and please don't feel bad about that - I could give other background that is horrible as well - my father not being in my life but being in my siblings lives which I don't understand what I have done to have him single me out. A second horrible ending marriage (cheater) which nearly destroyed me.
I guess all I can say is that my family - my grandmother, my mother - saw something in me as a very young child that is true. How they saw it, I don't know - I think my grandmother and mother were in the former and is in the latter both INCREDIBLY STRONG women during even difficult times for women and even now my mother is a force of nature. She battles her own demons and she survives and she is SO STRONG. My grandmother was the strongest women I ever met.
It started with them seeing in me what was in them. I am like them and I am proud of that. I am Strong and I am a Survivor.
I am proud of that. And it will get me through this. But I also need help and so does my husband - how do you ask? I wish sometimes I didn't have to - that through all of this so many have seen what I need and they would just help. What do you do? Or are you like me?
And please don't worry about my past and concerns or sympathies about that - I have overcome - I share because it is part of who I have become. I would rather the concerns and sympathy come for what I am now going through - my disabilities.
As always - I wish you all well. I wish you strength and I wish you help.
copyright owned by Elizabeth Wakefield, December 20, 2010