how we perceive ourselves and condition

[Guest tearose]

After reading a couple of posts on the faces of dinet thread, I felt compelled to reconsider how I perceive myself and how I project myself to others. I want to share Merrill's thoughts here and toss these around for more feedback.

Merrill wrote:

"Maybe this is the wrong place for this note ... but something in the last two posts has triggered this in me (and caused my heart to quite literally pound a little harder and faster). I feel compelled to write this!

We are an eclectic bunch on this board ... we share some common bonds ... one of which is that probably 97% of of us have received a diagnosis of POTS on the basis of a tilt table test and other autonomic nervous system tests, and perhaps 100% of us have dysautonomia of one sort or another (or are caring for someone who does). We also share a bond of compassion and interest and intellect and curiosity...

But I just have to say that we are not all alike in the way we perceive ourselves and our conditions... I do not consider myself sick or characterize myself as a sick person, and I am not suffering miserably with this syndrome--even though I experience it constantly, I'm conscious of it every minute, truly freaky things happen to me from time to time because of it, and I take certain actions to alleviate my symptoms or simply move through them and past them all the time, day in and day out. I'm a person, not a patient! Just because walking down the hall at work today got my hr to 153 doesn't make me sick ... it just makes me ... I don't know... ME!

I know what you guys are saying, though ... maybe in the picture I look like a person whose heart is beating steady at 70 bpm... but I can assure you, it was racing darn fast right then... I was awake, and it was a short walk from the car to that fallen tree. But it was a beautiful day, I was with someone I love, and I felt happy inside.

I hope this is true for others, for those who posted pictures and for those who didn't--that there are moments (perhaps those captured on film) where you felt more like a person than a patient--that your inner spirit was shining and you didn't think about whether it would be better to sit or lie ... because joy wins after all!

Peace,

Merrill" end of quote

If you asked me now for a simple one sentence statement of how I described myself, I would say, I think of myself as spunky, positive and health challenged. Maybe this view needs work. I'm open minded and thinking...what are you all thinking... how would you answer that question?

Do we set ourselves up for less when we think of ourselves as "sick"? It was hard for me to accept the term disabled. Did anyone else have trouble with that? Do we heal faster when we believe we are in good health? I know the "studies" say positive thinking is essential to maintaining good health but we can't make dysautonomia go away with positive thinking!

tearose

[corina]

Hi Tearose,

well, I don't consider myself as sick (although I definately know I am) but I try very hard to do the things that I'm able to and just be ME. ME is not sick, she's just a person having problems, and I think problems are there to try and solve. That doesn't always work out the way I want but hey, everyone has problems (being sick or having other problems) and for everybody his/her problem is important. But there are so many moments in life to enjoy and I think the photo's Katherine added are photo's of where we were experiencing a nice or happy moment, and like everybody we enjoyed that. I know I'm sick and in the years I have this POTS I'm slowly getting worse. I (like you) can't accept that I'm disabled (but I sure am) but I certainly don't think that positive thinking will heal me (in stopping the POTS). BUT possitive thinking DOES help me in handling POTS and try to get the best out of me, stay a nice person and stay open to other people. So I'll think possitive (I guess that's just me) and maybe. . . who knows . . . but however it will help me.

Take care,

Corina

[Gena]

I completely agree that positive thinking has amazing powers! It might not make dysautonomia go away, but it has definitely help me reduce the impact my symptoms have on me and it has also helped shorten the duration of my symptoms. I think on a daily basis, hourly or even every minute, to some extent we are all thinking about our condition, how to handle it, what we can do and what we can't. I think it has a way of taking over our thoughts sometimes.

When I realized I first had POTS over the summer, it was all I could think about. Also, when I first started reading posts about symptoms like heat intolerance, dizziness, overstimulation by lights and sounds, fainting, etc. I found that I started limiting myself in activities that I really didn't need to. For example at first the heat really did bother me, but then one afternoon I found myself gardening in the heat of the afternoon without even thinking about twice about it. I realized half way through, hey, I'm gardening and it's hot out...I can do this! I think it's the fears of the unknown and the "what ifs" and trying to imagine the future that can really paralize us if we let them.

I have to remind myself that negative thoughts affect our cells, how they function and our body's healing process. I have a message taped to my bathroom mirror that I see every morning when I get up. "It says I am a positive thinking person. I am happy, healthy, strong and whole -- heart, mind body and soul."

It may sound silly, but it really helps especially on those days when I'm feeling lousy. I repeat it to myself over and over and write down all the things that I'm thankful for in my life. This improves my outlook and keeps me going. (Okay, I'm getting way to philisophical, but Tearose did bring up a good point!)

[calypso]

I go back and forth between thinking I am seriously dying and that I am going to suddenly recover one day. I don't think of myself as healthy, but I think my case is a little different than most here. I do seem to be still going downhill. I try to remember that I haven't had a bad tachy spell for a few months and that I can still walk, work part time, and take care of my daughter. And that gives me a sense of accomplishment. But for me, I think I still haven't come to grips with the fact that I may not return to the old me. I still have so much uncertainty because I haven't received a clear diagnosis. I try to think positively but it's still quite difficult, and many days I feel consumed by my condition.

Amy

[Michelle Sawicki]

When I was r-e-a-l-l-y sick I definitely perceived myself as a sick person. I couldn't get out of bed and I had no idea what was wrong with me. At that time I was very sick and it would have been impossible for me to pretend to be anything but. However, I think -just like with death- when you have a chronic illness you go through stages. I think everyone starts out being shocked and saddened and maybe in disbelief. Then we slowly -hopefully- begin to accept the limitations we have and find new ways to reach goals and find fulfillment in life.

I think we are all in different stages right now. And we need to experience each stage in its entirety to move on to the next. And we need to accept each other for where we are, and to help each other through.

Michelle

[briarrose]

Nicely said Michelle.

Everyone here has a great perception.

I started a sentence with the word stages and thought twice after the post this week about the stages of POTS

I think we're a tough bunch with a justifiable cause. We have a lot of challenges, finding medical care, dealing with this illness and all the curves it throws at you, the public perception and ignorance, families, friends, etc.

But like anything else it?s a learning process, maybe not one we would have asked for but one we do our best to accept and thrive at.

I've personally met a lot of wonderful, encouraging people here and it has helped me to grow.

[blackwolf]

I personally feel that I am "a crafty and creative person with a limited lifestyle". I enjoy life and living it, even with the limitations. I have become a better and more creative crafter who does crochet, quilting, needlepoint, painting, woodworking and metal work. I am learning candle making and hope to start with polamer clay soon. I enjoy reading and writing, music (all kinds) and especially love medical info. I feel I have adapted well to my new lifestyle and get 99% of I want done. I am pleased with where I am at, would like to more but still good right here.

Blackwolf

[Jersey Girl]

I'm with Michelle. When I was first became ill and couldn't get out of bed and couldn't sleep very well at all, I would say I was definitely sick without too much hope because no one knew what what wrong with me and that was scary. I have come to live with a "chronic condition" that I know varies from week to week, day to day, hour to hour, minute to minute. I have found it physically disabling in that I can't do near what I used to, but I am not totally disabled. I am very hopeful that someday, someone will find out how to improve our lot. Best wishes, Martha

[MomtoGiuliana]

I feel as Michelle and others have similarly expressed. When I had severe POTS symptoms, bedridden, I was definitely an "ill" person in my mind. Once I was diagnosed though, and learned more about the diagnosis, I certainly believed that one day I would be back to "myself". Now my symptoms are mild and some days I don't think about POTS at all. I know I am slightly challenged by my remaining remnants of the condition, but I wouldn't let it stop me from doing many things (but I probably won't climb any mountains, for example).

In addition, I've always known, even prior to diagnosis, that my strengths did not lie in physical stamina. It was always harder for me than others to do physical things--like climb, run, etc. So, that has always been part of my self-image, too. But, that has not kept me from being as active as I can be with walking, yoga, kayaking and other activites I enjoy.

We are all at different stages and have different levels of challenges with this condition, as Michelle said. For this and other reasons, we each have our own self image, and each is valid, because that's where we are. I do agree that positive thinking is vital for healing of any kind, but it is not always straightforward/easy--and in fact that's one reason this board is so helpful for me, and I know for many others too.

Katherine

[geneva]

When I read your post Tearose the first thought that came to mind about how I would describe ME in one word is "changed". Changed to me means that some things in the last 4 years have been good...I would even say improved (more patience, understanding of others, married!) and others have changed for the worse ( health, loss of job and more isolation than I feel good about). But, I admit that for a time I got lost in the illness. I am glad to say that is not true today.

I think it is important to acknowledge the illness and then move on, but for each of us that time is going to be different. BTW if anyone hasn't read it, in one of the DINET news letters there is a very good article on the STAGES of CHRONIC ILLNESS.

At the onset of my illness I was living and working abroad and only came back to the States for additional medical care, taking 3 weeks "vacation" time to find a diagnosis and treatment. I left my job, friends, apt, etc and I kept telling myself I would BEAT this, whatever it was and go back to my life overseas. No matter how much I tried to use positive affirmations, however, I wasn't getting better, only worse. As it turned out I never returned to that life so it has taken a long time to redefine who I am. Matter of fact I think I am still a work in progress!!

[Ernie]

Hi,

I started fainting when I was a child and I thought that everybody fainted regularly. When I went to NIH I even argued (for 15 minutes) with the doctor that it was normal to faint. When he told me that he never fainted in his life I thought that he was pulling a joke on me. So I only realise a year ago that I was not "normal".

For all the other weird symptoms that I have been having, doctors have always told me that it was my imagination or something emotional going on. I believed them because we are thought that doctors know it all!

Then when I started to faint every time I stood up 4 years ago and was bedridden, doctors were telling me that I was doing it to get attention or that I was poisoning myself. I knew I was not poisoning myself so I was wondering why I would do it for attention when 95% of my syncopes were when I was alone in the house. During the 2 years that I was bedridden I never totally realised that I was really sick because doctors had convinced me that I was making it up. The positive side was that it kept my spirit up because I thought that one day I would stop needing attention. The downside was that it took so long to get diagnosed that now I am disabled and will never be able to work again.

Then when I went to see Dr Grubb he gave me a real diagnosis and it was such a relief to learn that I was not imagining it or creating it myself. Then when I went to NIH I learned that my dysautonomia was genetic so there was no cure.

The funny thing is that when people ask me what I do for living I answer: "I am diabled" with a smile and proud of myself. I know that "disable" is a stigmatised word but not for me. It is because I finally have a diagnosis after 30 years of being told that it was all in my mind and I am now free from this guilt and shame I have had all my life.

Now I am working on reconstructing my life with my new limits. I still want to be useful to society and I am taking steps toward it. Each day is a challenge and when I go to bed at night I am usually satisfied with myself.

I hope that one day researchers will find my genetic mutation and medication to treat it and others like me. I hope that other people will benefit from protocols I have been involved in and that I will have helped science make another step to help all of you my cyber family.

Hugs

Ernie

[Gena]

Wow Ernie, I think that's the longest post I've ever read from you!

Thanks for sharing your story. That must have been awful going through life like that. I'm sure you were relieved to finally have a doctor take you seriously and give you a diagnosis. I know it must have been emotionally frustrating to have doctors imply that you were crazy...but I just had to laugh at your statement that said...

Then when I started to faint every time I stood up 4 years ago and was bedridden, doctors were telling me that I was doing it to get attention or that I was poisoning myself. I knew I was not poisoning myself so I was wondering why I would do it for attention when 95% of my syncopes were when I was alone in the house

Duh, how can you be asking for attention by fainting when you're alone?! doctors can be so simple minded and idiotic sometimes.

Well I'm so glad that you've gotten to a level of acceptance and I pray too that one day researchers will be able to find a cure, if not in our lifetime, at least for future generations.

[danish]

I know that I am much more newly diagnosed than most of you here, so I haven't really had as much time to even think about how I percieve myself. However, I think that the biggest factor, at least for me, is how I'm viewed by other people. In school I've often been thought of as "the sick girl", or "the girl who faints"--and not necessarily in a bad way, just, like, as a fact. Instead of my identity being "football player" or "cheerleader" people hung onto what is probably my worst trait. So when I'm around teachers, friends--anybody--who look at me like a sick person I'll begin to feel that way. But even in the hospital when friends visit and treat me normally, the "sickness" is no longer such a big component in my identity.

I don't want this condition to be a huge part of who I am, and in turn I don't want people to look at me that way. However, it's very difficult to not let dysautonomia take center stage when I'm often excluded because of it. For instance this year all of my friends are getting their permits and licenses and it's a HUGE deal and something we've all been waiting for for such a long time. With doctors telling me that it's not a good idea to start driving now, it's obviously affecting a big part of my life. Maybe once I have a better treatment and I'm back in school I'll feel a little differently, but for the moment I think I do look at myself as an ill person. A few years ago I took dance lessons four days a week--now I often can't even get out of bed in the morning.

[Ernie]

Hi Gena,

Thank you very much for your encouragement. It's really nice of you.

I did a Bachelor of Psychology to understand the "disorders" that doctors have given me for years, ie psychogenic, munchaussen, conversion disorder. I still have many wounds to heal from the mistreatment I had from doctors but having the right diagnosis makes a big difference. I now have respect from doctors!

You know what the psychologist answered when I told him that 95% of my syncopes were when I was alone in the house? He said: "But you still have 5% in public!" I couldn't believe that he was so stupid.

I think I have heard just about every crap that doctors and nurses tell us. I think they are thought to go by the book and if we have something they don't know then it does not exist. (I have just read Briarose story with her PCP and diabetes).

I will always appreciate what Dr Grubb and Dr Goldstein have done for me. I don't know where I would be without them! We need other doctors like them and like Tearose suggested they should clone themselves!!!!!!!!!

Ernie

[katsusu]

sorry-did not come out the wayi wanted.

kb

[Sue]

One of my best friends has cancer and has gone through many many stages over the past year. She knew something was wrong with her but the doctors had a hard time diagnosing her. When she got the diagnosis she was relieved in a sense to know that it wasn't in her head, like suggested by several doctors. Sound familiar?? As her cancer has progressed and several treatments tried out. She has felt relief with some drugs and others have made her feel worse. Sound familiar?? When she lost her hair she said she felt like she lost her identity. Again sound familiar?? This past year has been a rough one for both my self and my friend. But together we decided we are still the wonderful person that god made us, we are strong, we are beautiful. There are so many mountains for us to climb we just need each other to do it. Don't ever let this "illness" get the better of you (and yes I too have a hard time with that sometimes) Hold your head up, be strong..

[katsusu]

Yes it does sound familar. I am glad you had each other. Please don't get me wrong-i am a positive person 95.9 % of the time but found out that by being so strong and trying to keep that image up - to be an example and to protect my family from knowing how much POTS and PD effect me - that i was causing long term damage. i think that being strong (even or especially when you don't really want to be strong) has pushed me to keep a normal life and keep some functioning. But i have been so strong that my familyand friends do not always understand what is happening to me when the POTS and PD over powers my strength.

What i was trying to say- unsuccessfully in my last reply - is sometimes you will feel bad-emotionally and physically- when that happens give yourself a break- don;t feel guilty and just give yourself a break and relax till you have the strength to go on again.

Kathleen