As we live our life and age we supposedly learn what are called “Life Lessons.” I’m not quite sure what these lessons have given me. I am still, at age 51, in a quandary regarding most things that life throws at me.
One thing that has haunted me for a while now is whether or not I am a good person. Being chronically ill changes the way many people view you. I have for a long time now come to terms with my illness. I have accepted my limitations.
What I cannot come to terms with how this thing “Lupus” has tinted the picture of me. How others view how I go about my day is the dilemma. Why should it even matter? But it does. Big time. And it hurts. It hurts almost as much as this illness does.
At least twice in the past month I have had to defend myself to those who lack any understanding. It has occurred to me that for the past two weeks I explain, rationalize or even better justify how I am living my life, And, it sucks.
No one knows better than I do how much my life has changed since “the diagnosis”. No one grieves more than I do for what (as my dear friend Loretta calls it) “Ms. Lupus” has taken from me.
Yes, the difference in me is remarkable. I am not the same as I once was. And, as many times as I try to explain it, I am not the same woman (wife, mother, sister daughter or friend) I used to be.
So why does it hurt so much when those who are unaware berate me on the subject of what I do not do.
Consequently I have become acidic. Not because I am ill but for the reason that I am discouraged having to constantly spell out that I am sick.
Those who live their lives with a chronic illness understand what I am trying to say here.
Having to explain why I cancel plans, yada yada yada.
As if I had a choice to become sick. As if there were a list of things presented to me and I chose to be ill.
Those of you who cannot understand what goes on in my body on a daily basis please stop berating me. It hurts. And, just so you understand something I not only have Lupus I have Rheumatoid Arthritis, Hughes Syndrome as well as many of the other crap that goes along with auto immune diseases. Again, I need to quote Loretta and say....... I am not complaining, just making a statement of facts.
Please take a moment to read from some of the following websites.
http://www.butyoudontlooksick.com/the_spoon_theory/
http://www.womenshealth.gov/faq/lupus.htm#11
Posts
10 comments:
(((((((((((LU)))))))))))))))))))
It is wonderful to see you blogging yet sad to know what you are going through.
I was hoping to see pictures of your new home (or is that the other Blog so you want to build a home, if so I don't think I'm getting notices on it)
There is so many ups and downs with this darn illness. FINALLY today I had someone asking me questions about it... what is it? what does it do to you? How do you cope with it?
I finally felt good about myself that a positive person seemed to care, someone I've never met before in my life.
Ditto for a 14 yr old boy.
Yet in my past I've had some real hum dingers that are blunt, straight up and very painful with their words.
I pray that tomorrow brings a brighter day for you. You are a wonderful lady, and yes I understand what you are explaining in your blog. I hope others who are "non-autoimmune" will understand too.
if not, read your links provided!
Take care, wonderful to see you blogging!
Would love to see your beautiful home now.
Love
Kathy
What right have they got to berate you over anything at all? I have learned that we who have "invisible" disabilities must be aware of caring too much about how others view us. When I find myself defensive about how I have to live my life, I realize that I am giving my power (and energy) away to people whomay never understand. You clain your own powewr, and save your energy for those who do "get it" Margo
((((((((((((gentle hugs dear)))))))))))))) Though I'm sorry for your frustration and hurt, I am so glad to see a journal entry! If you feel up to it, email me please?
loving you
karyl
Lu,
It really does stink to have to keep explaining over and over.
It must feel like people don't believe you because if they did... they would let you be so you could focus on managing the disease.
This is truly a terrific entry. I think a lot of patients can understand your frustration and, certainly, the links you have added are perfect.
Thanks so much for writing this.
I know it takes a lot of time and energy to do so.
(((((HUGS)))))
Much Love from,
Loretta
As I was reading this, Lu, I was thinking of spoons and there you have the link! I am tired, so tired of people not understanding why I don't leave the house much or cancel plans alot. I try not to even make plans and that bothers people. Oh well. It is good to see you post. I have been thinking alot about you and you have been in my prayers, honey. Love, Val xox
http://journals.aol.com/valphish/ThereisaSeason
http://journals.aol.com/valphish/JoyInTheRain
I think that someone with a chronic illness, especially one that doesn't necessarily show on the outside, develops layers of being that others who aren't chronically ill don't have. They often remain flat, if you know what I mean. They look at you and see a woman who doesn't look ill, therefore you must not be ill. You, on the other hand, probably look at someone who doesn't look ill and make no judgment if that person starts talking or writing about their illness. You have a depth that those other people don't have and possible can never have. It would have to be frustrating to have to explain, over and over, about your illness and the effects it has on your day-to-day life, and after a while it must seem that it's just not worth it, especially when you have to explain over and over to the same people. Just leave them. They're not worth it. Take what they say or write and just turn it away from you. Visually them or their words, literally reach out with your hand, pretend you're picking up them or their words, and then just toss them away. If they're standing in front of you, TELL them what you're doing. "I'm tossing you/your words away. You/They aren't healthy for me. I'm ill, but you'll never see that, and you'll never understand, and why should I suffer for your ignorance? So every time you berate me or put me down, I'm just going to toss you and your words away." I guarantee you they'll remember that and perhaps will think before they say something negative to you again!
Lori
Damn... Lu I missed this entry! I was away... but I didn't get an alert either! I am so sorry!!! You are so wonderful and still remarkable... it is so damn hard isn't it.
{{{{ hugs and love }}}}
be well,
Dawn
Hi Luanne
I've got you marked so I can keep up with you. Good to see you over here.
Hugs and love,
deb
Hi Luanne! I am glad you moved over to Blogger =)! I am in the process of editting my blogs some. Here are my two addresses...
http://thereisaseason-val.blogspot.com and http://joyintherain-val.blogspot.com. I really think you would enjoy Joy in the Rain. It is my happy place!! I wish there was a better way for alerts on Blogger. I was reading your last entry. Boy do I EVER understand. I love the Spoons website. I still have family members angry at me when I cancel plans. You would think THEY would understand after all of these years of my being sick. Oh well. You take good care. I love you, lady!! I hope to see you over at my place when you are able. No pressure... Hugs and kisses, Val xox
P.S How are you enjoying your new home?
Oh how I know EXACTLY what you are saying! I hate that you have people around you making you feel this way... it is so unfair isn't it? ARghhhhh! Sending you love and hugs and prayers and understanding...
be well...
Post a Comment