MDJunction - People Helping People
 
Ask a Question
05/23/2011 06:30 PM

Denial?

scottie47
Posts: 479
Member

I have to pose a question to you all.. Do you find that you constantly have to remind people of your illness? I dont know but it seems like my sister is either in denial, forgetful, or just doesnt get it!!! I explained this disease to her in detail.. She even went with me to San Diego to get my diagnosis..I posted earlier about my flare up recently.. Since then, the lipomas in my upper thighs have been sort of painful and sensitive. I have lipedema also and I know that a compression garment will be helpful.. I mentioned to her that the fat in my thighs was painful,and that I was looking for a long leg shaper, and you could feel the confusion over the phone. Then she repeats what I said like I just said the stupidest thing!!!!! I didnt want to say anything about the disease again but I cant believe that everytime I mention something, she acts like there is nothing wrong,or that Im making something up! I love her to death, shes my sister but I feel like I cant mention anything to her about this disease..I didnt even tell her that I was sick last couple weeks..I dont generally mention it to anyone except when I post in here and I just feel like I dont have any type of support here at home. I just cant believe that after getting an official dx, that people would still be that insensitive and still lack understanding..Even if you dont understand the disease itself, at least acknowledge that maybe the person is really in pain or uncomfortable or fatigued..Im ranting and rambling as usual, but my feelings are hurt sometimes..esp by the people that I am going to have to depend on should this thing progress!!!!!Ermm Unsure
Reply

05/23/2011 06:36 PM
Chenaya
 
Posts: 69
Member

Hi Scottie,

I think everyone on here with Dercum's would entirely understand what you're saying. We look normal and have peaches in our cheeks even (lipomas in GrandmaSylvia's case, lol), so it is hard for our family and friends to remember our condition and challenges. May I suggest you write to your sister, pretty much what you wrote here, only a tad more lovingly. Meditation is helpful to us, to help us get calm. Have you got any nice c.d.s with nature sounds or similar that you could lie down and listen to?

Stay strong. Your fellow lumpies support and commiserate with you. Nicola


05/23/2011 07:11 PM
keeter

Hey Sarah!

I agree with Nicola that we all understand. I think every one of us faces that with at least some of our family and friends. My son was really refusing to acknowledge it until I let him see it affect me. When I cried from pain. Or limped. Or jumped when something touched me wrong. I think that has helped more than anything. As you say, we look normal. Mostly... And most of us are tough little soldiers who don't complain or show our pain to others. I had a few people call me on that. So I did start to let them see. And I started to explain what was going on when I was having a really bad day. The week before last someone asked me if I needed help getting up the curb. I started to say no and then I said "You know what? I really could use some. My leg is aching today and I'm having trouble walking." She had noticed me holding on to my truck as I started walking. That's a hard one for me. But I try to remember that it makes the other person feel good to have helped and by saying no we are denying them that.

Maybe just share more with your sister when things happen when you are with her. Mine saw me lose it big time last Oct. when I hurt so bad I just started sobbing uncontrollably. She still doesn't totally understand because she can't feel it. But I think she knows it is there. You may also have to tell her that you feel like she doesn't believe you. Maybe she just doesn't know what to say or maybe she really can't recognize it in you yet.

Many hugs for you!

Diane


05/24/2011 01:04 AM
grandmasylvia
grandmasylvia  
Posts: 3031
Group Leader
I'm an Advocate

Scottie..Yup that is how people react...I want to say "just walk a mile in my shoes" except I can't walk a mile anymore. I don't really care what other people think..you are the only one who feels your pain. You come into this life alone and leave alone. A little sympathy would be nice however. I sent my kids copies of DD info in emails. I was at my daughter's and I asked if she got the email. She has one of those enormous TVs hooked up to their laptop. So I had her bring it up and read it while I was sitting there...that did seem to help and she is a lot more sympathetic now. Your sister should be glad that she does not have it as it may be genetic...or at least the predispensation to develop it. DD is one hard disease for people to understand unless they have it themselves. That is why support groups are important. Even in support groups..members may not understand how it can affect your life as time goes by. That is why research is so important.

I feel so bad for the people in Missouri. We had tornadoes near here tonight. We had hundreds of lightning strikes in Ohio. I am glad to be safe in our home tonight. My heart goes out to those not as fortunate. You all take care and take shelter when you need to. Hugs, Grandma Sylvia


05/24/2011 06:13 AM
Margie
Margie  
Posts: 739
Member

I absolutely agree...I think many of us are in the same boat. I'm the eldest in our family and everyone always looked to me to get things done and take the reins but I can't and don't anymore and it is hard on everyone.

I have shared all the information and for some, denial and avoidance is easier than acceptance - love can be shown in many different ways and sometimes it is easier to pretend that something isn't happening that acknowledge what the illness really means in that person's life.

Sometimes, the lack of sympathy is just a desire to avoid the topic because people don't know what to say or do or how the dynamics of the relationship have changed. I no longer look "normal" on the outside since my lipomas are very noticeable, are both my arms, upper and lower and my legs are disfigured.

However, dealing with the public, I do my best to hide the problem and dress in ways that detract attention from the issue - partly to protect my job and partly to avoid embarrassment.

The warm weather means I will be less able to "cover up" and as a wise friend suggested, I can simply wear my DD lumps like a badge of honour and use them as a springboard to create awareness if anyone inquires.

This illness affects all of us differently - and that includes our families and friends - as my DD sisters said in the previous quotes, sympathy and understanding would be nice but when it doesn't come from the people we would expect it from - come back here to the group and we will help to hold you up.

One last thing ... we have to be willing to ask and accept help when it is offered. I have struggled with this too but when I had a melt down during the move and could no longer hide the pain and exhaustion it was a wake up call to all those who saw it and for the first time they were able to understand that I didn't WANT their help - I really, NEEDED their help and that, my friends has made all the difference for me.

Be well, and know that you are not alone in this "adventure".


05/24/2011 06:34 AM
keeter

Margie, that is an excellent point about the meltdown. I think that was what helped for me, too. When I let people see what I was feeling. I know it was hard for you as it was and still is hard for me but it's something we need to accept now. Give people the rewarding feeling of having helped you.

Stay strong and proud of who you are no matter what. And know that we are here for you when you need to talk.

Hugs,

Diane


05/24/2011 12:19 PM
scottie47
Posts: 479
Member

Thank you to everyone! Trying to take this one day at a time!

05/24/2011 02:34 PM
jlou
jlou  
Posts: 1235
Member

I think people sometimes don't want to treat you differently or wish you were as active as you used to be. I am blessed that I have a family who really understands (that came from years of me being sick though) but at work I sometimes feel like telling poeple to stop asking me how I am doing! It drives me crazy. I always say "Just lovely." and they can take what they want from that.

It all goes with the not looking sick. I wish we had little meters on us showing how much energy we had that particular day. Then if someone asked us to do something, we could look at our meters and say, "Sorry, looks like I am just about empty!"

I used to make plans (before I realized what was going on with me) and then I would blow people off and feel horrible about it. Now I try to tell them, I will try but I may need to bow out. I also really try to not too much if something important is coming up. My house is a MESS right now because of dealing with work and everything that has been going on with my friend (after her father passed away). Phil tries to tidy up but...well, he is a man after all.


05/24/2011 03:51 PM
keeter

The meter is a great idea! Smile I used to tell friends my dipstick was down to the dirty black gunk on the bottom and I needed some sunshine to fill it back up with the clear stuff. Wink

05/24/2011 04:53 PM
Margie
Margie  
Posts: 739
Member

Well, I like the meter and dipstick ideas - but wonder if those mood rings work! Wouldn't that be awesome ... if the ring turned red or black it meant everybody should just back away and leave us be and if it was a cheerful yellow or blue then, "let's get jiggy with it" It is hard for others to understand what we are going through and to be honest even I have a hard time keep up to how quickly my wellness meter can drop.

Hope everyone is having a good day - the weather here is beautiful today and with nice weather comes less pain ... Be well.

Reply

Share this discussion with your friends:
<< Start < Prev 1 Next > End >>


Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | About Us
Copyright (c) 2006-2014 MDJunction.com All Rights Reserved