Recently, someone wrote to me, responding to my earlier blog posts to suggest that my attitude towards life and my condition is not a positive one. Whilst I completely appreciate and welcome any comments about my blog, especially from those who are going through the same things, I wanted to put it straight that I am, in fact, a very positive person in my opinion, given my situation.
Yes, I may make sarcastic comments and moan about a few aspects of living life with RA, but on the whole I believe I cope with day to day life pretty well and my outlook on the future is one of hope. I suppose what I am trying to say is I apologise if reading this you have been under the impression that life with RA is awful. I am afraid it’s not, well not entirely anyway. Yes, there are lots of negative aspects of living with chronic disease, but on the whole I wouldn’t change a single thing about my life. I am the strong, ambitious and optimistic person I am today because of what I have been through. I know that without experiencing these not so nice things I would be in a very different place in my life right now, a place where I didn’t and don’t want to be. I am proud of who I am today and what I have been through has only encouraged me to try harder and hope for the best.
My ‘negative’ comments are simply shedding light on some of the not so nice things we sufferers go through to make it easier for non sufferers to understand the challenges we face. The truth is, I am pretty happy with my life, the things I suffer with only get easier as time goes on and you know what to expect. My reader who wrote and suggested that I be a bit more positive for the sake of younger readers who may fear the future is probably right. I agree it’s good to set a positive example to young people who may read this and worry about what to expect but isn’t it also important to tell the truth? Because, if nothing else, I am completely honest about my experiences and I don’t sugar coat anything because it’s my life. It’s what I am going through. It doesn’t mean to say you will face the same things; you may have a total different experience to mine. But on the whole we sufferers know that unfortunately, RA is not a nice thing. It’s hard and it’s frustrating, but the point I try to make is that life does go on. It may change course slightly, but life does go on and things do get better. Much better in fact, as you learn to cope with your condition and the limitations it presents. Of course, you might not see it as limitations, simply obstacles that may mean you have to do things differently than others or how you did them before.
I apologise to my readers if I have given you the impression that doom and gloom is all RA adds up to. I never intended to project this through my writing and I hope the majority of you see that. I am simply a person, retelling my story, in the only way I know how... honestly, openly and with a few sarcastic and light hearted sentences thrown in. That’s how I generally live my life anyway so I wouldn’t want to be fake and pretend to my readers that everything is glorious all the time. It’s not, and let’s face it life is not like that for anyone (apart from some very lucky buggers). I don’t want to preach and start banging on about life affirming or anything so I simply tell you how it is. I tell you what I do, how I do it and how I feel. If you are a young person, which I consider myself to be too, then hopefully you will ‘get’ where I am at. I am still trying to figure it all out myself to be honest so I hope you won’t judge me for having a bad day and ranting about it in a negative way. Sometimes that’s all the therapy I need, to just write it all down and move on. The difference is the things I write are left there for you to see. How you take them is down to you and I never read back through my posts because I don’t necessarily want to remember what I said or what I’ve done. It may bring back memories of things I have moved on from. Maybe one day I will sit down and read my own life story, or the last couple of years of it anyway, and be surprised or outraged by what I have written.
But as long as I know I have been honest and open and if one single person can relate to what I have said and know that they are not alone, then I have done what I set out to do.
(I just want to point out that this is not an attack on the person that wrote to me, just a response to why I think I am not a completely negative person as they suggested. I totally respect their opinion and understand where they have picked up on negative tones in my writing... but I know there are positive tones in there too. I am just not fearful of telling the truth because when I think back to my diagnosis I was scared and alone. If I only had an idea what to expect from an actual person who was actually honest rather than trawling through devastating internet sites and then getting the total opposite life affirming happy, smiley chat rooms where ‘everything will be OK’ then I might not have been so scared. I would know that there would be both good and bad times but I would get through it, and I’d be a better person because of it.)
Hell yeah - Say it like it is!! If this is not a safe place to say how you are really feeling then I don't know what is...
ReplyDeleteIt is down to the reader as to how they interpret something. People can often misread what has been written due to their own thoughts/opinions on a topic. Therefore, if you think you have, it's maybe worthwhile to re-read the text or contact the reader for clarity before jumping in with sweeping judgements.
We must say how we are really feeling if we are to avoid damage to our mental health. We cannot be completely positive all of the time; that is simply not an accurate representation of how life is, regardless of whether or not you have an illness. It's about balance and I feel RG does that really well. However, if she were going through an immensely hard time it would not be wrong/unexpected for her posts to be less positive. It is up to the reader to take this into account and maybe offer support.
Also, this illness is different for everyone so one person's experience does not necessarily mean that you or others will experience it that way. There is no right or wrong way to feel when it comes down to illness, it's a bit like grief in that way. Also feelings and ways of coping are fluid, they vary all the time depending on our current disease activity and any other varying factors within our lives'.
Personally my first five years of ra were a bear! A big huge black bear that kept clawing at me from without and from within. I never took you as a negative person. I saw that you were finding your way with ra as all bloggers who are blogging about ra are doing. And I think it is important that newbies understand that not all of us get the fix with meds that some do. Unfortunately there is still a long way to go with medications and ra in my humble opinion. But it was nice of you to post that there may be a light at the end of this tunnel and I truly believe there is for raers. It is just a question of us finding our way to that light. And we will all do it differently and that is why newbies need to research, read and talk with their own doctors. They need to find their own way along this journey. We as bloggers can only share our travels along the ra road...it is up to them to figure out how they will travel their individual ra journey. Keep on blogging and keep on being you.
ReplyDeleteHello lovely, I think that your blog is hugely encouraging. You take into account the not so brilliant aspects of living with RA in a mature, sensible and honest way which paints the picture of reality. You come across as very positive and giving these insights is necessary...surely?!
ReplyDeleteKeep up the great work, L xx
Soooo well said! I have RA and have never found your blogs negative only truthful. Having this disease can make a person feel so isolated, scared and down, reading your words only fills me with energy, hope and admiration. Continue doing the great work that you do and most of all, continue being you! xxx
ReplyDeleteSorry folks, in my previous comment I meant to write that *"the reader should contact the author"*( not reader as I wrote - doh! ) for clarity on any issues...
ReplyDeleteThat is lack of sleep at it's best and I'm sure we can all relate to that! ;D Heehee
Hi there I have AS not RA, but I find your blog inspiring. I wish I could write my feelings down more poetically, then I too might have a blog worth reading. Please don't take this persons opinions to heart. It is very easy to sit in judgment of others and how they are "dealing" with life in general. However, no one knows how hard you may have had it. I think your honest approach is refreshing. I certainly don't see the point in trying to make chronic illness seem like a common cold. It's hard enough trying to convey what it's like to live with (to those who don't understand). We need to actually help those around us understand what it's like. Maybe if I have been more prepared I wouldn't have felt so alone when it did get really hard to deal with. Certainly, we all know everyone's disease/illness progresses differently. xoxo
ReplyDeleteHey if they don't like what they read they can go to another site! Don't apologize for writing from the heart. Well said.
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