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How did you come to terms with your diagnosis?
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Christine Miserandino posted:
I'm told all the time that people admire how I have come to terms with my lupus diagnosis and how I'm living a positive and full life. The truth is I don't really know if I have fully come to terms with it. But I make a choice every day to try and live the best life I can, even if that means playing with my daughter in pajamas, straight from bed in the morning. Do I mourn the life I once knew? Yes! But acceptance came little by little, as each symptom or flare came and went. I accepted the life changes as they came, not all at once. When I had to take more medicine I accepted it. What other choice did I have? When I had to change my college major to a career that didn't involve as much energy and movement, I was angry, upset and depressed. But in time and with maturity, I moved on.

We live with a major change in our lives after being diagnosed with lupus. The life that we once knew is gone, and there is a grieving process. At times, we deny that it is happening. We get angry, sad, and even depressed. ALL of these emotions are normal. Like a death, we don't ever really "get over" the loss of the life we lived prior to having lupus. But I do think we can learn to move on, and we can appreciate and live life in new ways. As I said, I accept my lupus diagnosis with each new change I experienced, and it has been a conscious effort. And I do not succeed every day. There are days when I want to scream! Everyone comes to terms with their lupus diagnosis in their own way, and no way is right or wrong.

How have you learned to accept your lupus diagnosis? Are you still struggling with it? There are so many emotions to work through. Let's share and help each other through the process.
- Christine Miserandino
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redwingfan2010 responded:
I was diagnosed in October 2009, and I am still working on acceptance.

I discovered last summer that I had a serious intolerance to the sun/heat/humidity. Spent my summer indoors, in a major flare the entire time.

I am grieving the loss of my future summers... no more trips to the beach or the amusement park. We took our boys to a hotel with a great indoor water park last fall, and I only lasted 15 minutes in the warm, humid air - thought I was going to die). I spent the rest of the day in the hotel room alone. Not my idea of a vacation.

I think that is the worst part so far, for me. I can deal with taking the meds, having some fatigue, some joint pain, etc... but not being able to enjoy the outdoors in summer is just downright depressing for me... My 5 year old asked me repeatedly last year when we were going to Cedar Point (nearby amusement park). I was never able to take him. I feel like he lost his summer, because of me.
 
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K2isKsquared replied to redwingfan2010's response:
TERMS??!!! I accept no terms. I refuse to accept the sentence. I reserve my right to appeal.

The best offense is a good defense, and I intend to be as offensive as I possibly can.

K2
 
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pugpuppy replied to K2isKsquared's response:
I love your spirit!!! I am with you!
Pug
Even if you fall on your face, you're still moving forward. Victor Kiam
 
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pugpuppy responded:
I do love K2 s strength.
I have just learned to deal with my lupus one day at a time.
I tell myself it is what it is....and I can't go back. I to miss my old life. I used to have my health but now I have life, I am thankful for that.

love and light
Pug (Lynn)
Even if you fall on your face, you're still moving forward. Victor Kiam
 
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Christine Miserandino replied to K2isKsquared's response:
I LOVE your sense of humor and your spirit!

For me, I do what I can, when I can... and accept what I can when I need to. But yes, I fight the good fight and give lupus a run for it's money whenever I can!
- Christine Miserandino
 
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Christine Miserandino replied to redwingfan2010's response:
Redwing, I feel the same way with my daughter.. will I take her to the beach, will I be able to watch soccer games in the sun. I think many mothers who have lupus will probably feel better reading your response like I did... it helps to know we are not alone.
- Christine Miserandino
 
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renalupie1 responded:
I never really had time to deal with my own illness, as I was caregiving for my mother at the time of diagnosis. It was a struggle to take care of the both of us, so tended to ignore myself alot.

The support I received here really got me through the tough times. The bonus I had with being a caregiver, mother, and full time employee, was that I didn't have time to pity party myself!

I agree with K2, I refuse to give in to it. I am fortunate, that my lupus is/was mild. The fibro is controlled with exercise and rest. And the RA just learned to get out! LOL. Now if only my fat cells would follow.....

Rena
 
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renalupie1 replied to redwingfan2010's response:
There are shirts out there that block UV rays, check with a sporting goods store. Hats, large brims. We did Soak City during the cooler part of the year. Not too cold to enjoy, but when I didn't have to melt either.

How far are you from Cedar Point? I am an hour south of it!!!

Rena
 
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redwingfan2010 replied to renalupie1's response:
@ Rena - I am about an hour and a half north of Cedar Point - Detroit area.

I may try going in the spring, before it gets too hot.
 
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redwingfan2010 replied to renalupie1's response:
@ Rena - I am about an hour and a half north of Cedar Point (Detroit area). We used to get season passes and go almost every weekend.

I may try to take him in the spring. Unfortunately, I am extremely sensitive to not just the sun, but the heat and humidity as well. I do the sunblock, big hat, etc... and I'm still miserable. The summer before wasn't so bad... last year was my first summer on Plaq, and I wonder if that has made me so intolerant?

Maybe spring/not real hot I could do.
 
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renalupie1 replied to redwingfan2010's response:
I totally understand the heat and humidity. I find the worse the inflammation, the worse I am. I don't really know if the plaq had anything to do with it as much as taking steroids and then gaining all the weight from them. GRRR.

I do much better now that I am off all meds though.

Would definately discuss with your doc and see what they think!

Rena
 
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lupylisa44 replied to redwingfan2010's response:
I miss Cedar Point!!! We used to go there at least couple of times every Summer!!!
With love, with patience and with faith, we'll make our way.
 
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lupylisa44 responded:
So here's the thing with me and lupus. I was in totall denial at first and did everything they said not to do (I was young) and I got better.

When everyone in my life said "you have to accept your limitations and the fact that you have lupus," I got sick.

Then I went back into denial mode and got better.

Im in Denial and it seems to be a good place for me to be!!! LOL!
No, really, it is!

Lupylisa


psI have had lupus for almost 27 years!
Lupylisa
With love, with patience and with faith, we'll make our way.
 
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beccajo19 responded:
Christine, I have struggled for 8 years now "accepting" this diagnosis of lupus but it is really hard....until I read your note. It's nice knowing someone out there like me feels the same way I do. I started going to therapy to talk about how to deal with my feelings because I felt like this was something I've been "lazy" about and will just "get better by Monday". I went from a young mother of 2, working full time for a busy ob/gyn physican, soccer mom/coach to sleeping, sitting/laying on the couch, working 15 hours a week mother of 2 with Lupus. I'm sick of people asking me how I'm doing and my answer is (if I told them the truth) "crappy & horrible" but I tell them I'm good and leave it at that. Who wants to hear someone complain all the time. I wish I could have my old life back....spending it with my kids and husband doing fun things feeling full of energy. Every day is so exhausting....working is getting harder but I can't imagine not working....it feels like I'm giving up. Advise?
Your words have touched me....thank you.
Becky-


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