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Posted on 5. November 2010

Understanding What You Want: Getting What You Need

By Kris McFalls

Patients with a chronic disease rightfully place a high value on relationships. Although we seek out love and support about our diseases from family and friends, that support is sometimes the most elusive, unmet need for us. Maybe the answer is to understand what it is that makes us feel loved and supported, and then to learn how to communicate that to friends and family.

While I am happy to discuss my boys and their disease, I am not one who needs or even wants to talk about my own symptoms and how they may affect my life. My boys will tell you that I am a fiercely independent woman who, like a two-year-old, wants to do everything myself no matter what the obstacles or the consequences. Truth be told, however, as I have “matured” (a euphemism for aging), I have discovered that a little bit of help, especially when I am not feeling great, can be a wonderful thing. Having support when I need it most makes me feel loved and supported. Still, even when I’m sick or recovering (as happened recently after hip surgery), I would much prefer that those around me figure out that I need help without my having to ask for it.

My boyfriend is a bit old fashioned. In his culture, the man is supposed to do the heavy work. He understands that I don’t like to talk about my symptoms and, quite frankly, they often scare him and make him feel a bit helpless because he cannot fix them. But, although he doesn’t really understand the medical stuff, he wants to be supportive, and he prefers to show he cares by doing projects and chores around my house. You would think that we are a match made in heaven, but as it turns out, there is still a piece of the puzzle missing. I am still bad about admitting I need and want help, and he is a typical guy who actually needs to be asked to help.

My recent hip surgery provided us the opportunity to increase our communication skills. I very much appreciate having a well-groomed yard. I also really like to mow my grass because I have a lawn tractor, which makes it fun. However, part of my lawn still needs mowing with a push mower. Even for me, the thought of using a push mower while still on crutches was a bad idea. Therefore, I was forced to ask for help. My boyfriend was happy to keep my lawn the way I like it because it makes me happy. I felt grateful, which got him some home-made chocolate chip cookies. Both of us felt appreciated.

Family and friends may not grasp the severity of a certain bodily symptom, but if we say I’m sad, scared, angry or depressed, maybe they can relate and empathize. Maybe the expectations are met by understanding our own needs and then communicating about the way others can help. If we are sad or lonely, maybe asking someone to sit and watch a movie with us will make us feel supported. If we say we are fatigued, having a grocery list to be filled, instead of listing off the things we can no longer do, will make both family members feel valued.

Perhaps friends and family may not need to understand all of the details of our disease for us to feel loved and supported. It may just be learning how to love and support one another despite our disease. How about you? Have you mastered the art of communicating what you really need from those closest to you?

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Categories: Life With IG

Comments (7) -

9:57 AM on Friday, November 05, 2010

Ah Kris, you describe the difficulty so perfectly!  I applaud your willingness to begin to look at your needs and asking for help in a new way.  You give us a good role model.  I relate all too well to your "fiercely independent woman" and the difficulty she has not doing everything herself.  I am grateful that "maturing", my illnesses and your example, are giving me opportunities to grow toward gracefully asking for and accepting more help...I need it!

11:33 AM on Saturday, November 06, 2010

Oh yes and you have raised an equally independent son. He is also trying to fullfill the traditional role of the man that takes care of everything so I think it is harder still for him flask for help. As the outsider for this situation, I am the one that is begging to help. All I want to do is everything that I can to make his situation easier for him. But no matter how many times I tell him to stay on the couch and I will bring him whatever he needs, he always manages to get up when I'm looking down at my books. As a result I have come to sit almost on top of him when he is not feeling well or doin one of his infusions. I'm in the process of developing a sixth sense to be able to tell when he needs help but doesn't want to ask for it. I'm getting betters at being able to recognize when he needs me, mostly by the look in his eyes. I just want him to know that I'm always here and ready to help, it makes me feel appreciated and like I'm a part of the solution rather than part of the struggle.

11:46 AM on Saturday, November 06, 2010

Very well said Kris.  It is funny how you continue to talk about communication, because that is the KEY in a nutshell.  I was recently telling my sister who has two PIDD's that she needs to communicate with her friends in order for them to understand and know what she is going through.  One of her PIDD's is Hereditary Angioedema - and one of her many triggers is the COLD.  She does not like to tell people how she's feeling and her source of dealing - is to retreat to her room and be alone.  But she has shared with me on several occasions that she wishes she could just deal.  Finally she took my advice and shared with a friend who she's been going to their house to watch movies that the cold becomes very painful for her and causes her to have swelling attacks.  So the next time she went over - they pulled a small heater out for the room to help keep her comfortable.  She was very touched by their thoughfulness and I replied - see what a little communication will get you.  People can't know us and what we are going through if we don't talk about it.  I too have the same PIDD's (along with our children also) and I am stubborn as well - but we do need the help and support of others to make it daily.  Communicate (educate) those around you and you might be surprised at what comes next. =D

11:14 AM on Monday, November 08, 2010

Woo-hoo, another great blog! I really think that learning to communicate with each other is one of the main reasons we are placed together in families.  There is the triple threat of understanding our own needs, developing a deep and abiding love for those around us, and expressing all those feelings so that everyone's needs can be met.  Whew! I know at our house it requires a great amount of patience on all sides.  Thanks for sharing great ways to deal with the challenge.

Lee Pfeiffer
12:29 PM on Sunday, November 14, 2010

Everyday my husband and I face the challenges of my multiple further debillitating disease processes that requires him to add more and more "chores." I felt very protected when recently during the repair part of my skin cancer surgery, my husband walked into the surgery suite and asked the surgeon why it was taking so long and explained that he lost me in January. The surgeon parroted to me "How could he loose you?"

We made a pact after my husband "lost me" for 6 hours after a lengthy abdominal surgery.  The surgeons signled the end of the surgery, but no one in the entire hospital could tell him where I was for the next 6 hours.  I was in recovery, fighting severe respiratory depression because the anesthesiologist OD'd me. When all else failed, my resorsful husband finely went to the hospital's pharmacy and followed my medications to intensive care.

I can imagine the fear he must have felt and we derived a plan, should any procedure take longer than expected for either of us.  I felt loved in intensive care, and I felt protected in the surgery suite at the sound of my husband's voice.  For this, I give him a huge hug and earnest "Thank you."

Rachel Rich
10:07 PM on Sunday, April 10, 2011

Well said.  I too struggle with communication.  Should I say what's wrong or just cope alone?  Should I be specific, saying "I've got aseptic meningitis" or just say "I don't feel well"?  

Finally I've decided to be as direct and vocal as possible.  That doesn't just get sympathy, but real offers to help.  And it clears the air. For instance, I'm not rejecting a friend if I need to stay home instead of going to lunch.  Or I'm not conceited just because my neck gets rigid.  Not to mention speaking out feels empowering.

On the other hand, I get sick of saying I'm sick; I want to talk about something else.  So as long as key people know the facts, I choose to talk to others about my new beading project or playing violin with the choir.  It's uplifting to celebrate small achievements.  

I guess it's all about balance.

Deborah Norris
11:17 AM on Friday, January 25, 2013

I've been dealing with two chronic diseases--I've had Complex Regional Pain Syndrome (also known as CRPS, or RSD for Reflex Sympathetic Dystrophy) and CVID as of three years ago. Kris is so right about communication. Twenty years ago, when I was first dealing with my pain condition, my children were still young. At that time, I think I was in a denial of sorts. I didn't want to even consider that I might have this pain for the rest of my life, and I didn't understand that it could spread (which it has). Trying to be the best mom I could possibly be, I didn't want to burden my children with my issues. Looking back, that was a huge mistake! My daughter, the oldest, seemed to understand things without having to tell her. But my son, who was ten at the time, grew up to be resentful when he was in high school, and rebellious when he got to college. I believe he interpreted a lot of my behavior to be about him--he had displeased me somehow, if I was sad or depressed. When I began drinking too much because of the pain, he became angry. If I gave him advice, he didn't feel he could trust me. Looking back, I see that it's because he didn't like the way I was running my own life. But these things weren't communicated between us at that time, and so the relationship slid into a precarious place.
Fortunately, I recognized my alcohol problem, and did something about it, and no longer have a problem. Instead, I have a great pain doctor. But I have also learned to speak up and say what's on my mind. I'm extremely lucky to have the husband I do, who has understood me and supported me along the way; we find it easy to talk, and always have. Now that my son is in his thirties, and has also found himself, we have an excellent relationship. I just wish it could have happened sooner. It would have saved our family a lot of sadness and self-recrimination. And, I think my daughter has benefitted from her mom's mistakes, even though she did understand me. She and her husband are able to communicate. I hope that for our whole family, we all can continue to do that.

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