Saturday, January 30, 2016

How Can We Help You Deal With Our Pain?

There is no doubt in my mind that after you are diagnosed with a serious illness, be it incurable or life threatening, you go into shock. You scan the words over and over in your mind and try to understand it and then process what it means to the quality of the rest of your life. For some of us this happens fast. For some it takes hours and others may take days. Whatever the case WE have to understand it and wrap our minds around it as well as we can before we can even talk about it.

I have found that many times people that really love and enjoy you are the ones that have the hardest time accepting your pain, sadness, depression or feelings of abandon. It is not that they do not care but they do not find it easy to believe that you have been stamped with an expiration date or told that life as you know it  is over. I will be the first to admit I fell apart on numerous occasions after each diagnosis. It never got easier. Because I was never diagnosed with something that had a cure. I remember sitting down and talking to my kids and my husband. My poor family was shocked. I mean when I say their faces drained of joy and color. You better believe it. They immediately were broken hearted. My husband was a rock for the most part. I mean I knew he was scared but the kids didn't. it tooks weeks of talking and researching and talking and praying for all the boys to feel like they were at a point where they could accept it all. I remember being so happy that I had their support. I felt so blessed.

Everyone was not that easy. I lost friends and the level of closeness changed dramatically. If I did speak to a friend or go eat with them, they just stared at me. It was so uncomfortable. I had a girlfriend literally break down and cry and run into the bathroom. I followed her and I ended up consoling her and telling her it would be fine,...I didn't really believe that myself at the time. But I had to make her feel better. It hit me that day that I would have to do this a lot. And over the years I gave found myself comforting and assuring other people about my circumstances. I know that has a great deal to do with why I speak and and why I advocate. I know that there are so many things that people do not understand about the illnesses. I also know that I am still trying to "get it" myself.

I wish there was a way to help our loved ones deal with what is happening to us. I know that our lives are so tied up in one another's that we often take on the pain and discomfort of the one's that we love, But I have to be very honest and say this, "I cannot make you feel good about what is hurting me." We can learn and we can work together to cope but being able to look at you and feel bad for you because you feel bad for me,...I cannot do it.

I have gotten to a point where I do not share all my pain and sorrow with my friends and family. I do not want to overwhelm them or upset them. So I find myself dealing with a great deal of this by myself. It is so  backwards but it is how things are. I always tell people to educate themselves as much as possible when someone they love is sick. That way at least you understand what is happening even if you feel like you cannot help, And be compassionate without acting like we are pitiful. If you have a question ask it. But do not add the task of trying to reassure you that we will be okay,....we are not sure of that ourselves. I can't make you understand why I am fighting but you can always  find out what I am fighting. And how you can fight with me.

I ask myself all the time how I can help other people deal with my pain and I come up with two things. One is to be very honest about what I deal with. The second one is to remind them that I am living what they are watching so I need their support and their concern. How I wish I never had to deal with this. It is so confusing and so much to deal with. Sometimes it is more than I feel I can handle. That does not mean I do not love my friends and family. It means that there are so many levels and seasons in this journey that I am learning to deal with and .I have to feel good or feel like I am at a good place with what is happening before I can get you to a good place. I can not make you follow through with plans to visit or hang out. I can not make you call me or check on me. And I will not ever overlook my situation in an attempt to make you feel comfortable. I just can't.

My niece told me once that watching me over the years deal with MS and RA and Scleroderma was overwhelming for her. It seemed unfair and it seemed like I would never be the same. I was honest with her. I may never be the "same" but I will always love her and enjoy our time together and I will always be available to all of them. But I need them to understand that they can support one another and help one another and not always let that job fall to me. Being sick does eventually affect the entire family and those around you,...I truly understand that, But as long as I am trying to deal and cope and develop a sense of what my life is now like and how my kids and my husband are , it is very hard to make sixty other people feel better.

How can we help you deal with our pain? The answer is,.. we have to be honest and we have to be protective of ourselves. Then we have to be willing to tell you that we are learning as we go and we welcome you to do the same. We love one another and believe it or not that fact is the most important one that will help us all to cope.



  1. Hi Valerie :) I hope u'r feel'n stronger & better than u were yesterday. U'r story's Beautiful & well said. I'm glad U'r such a strong Warrior keep'n u'r head up with all u'r going thru..Pace u'rself & keep n prayer with me praying 4 us All. Have a Lovely weekend. Soft hugs & prayers I keep u n :)

    1. Thank you so much you are so sweet and supportive. One day at a time for sure, I appreciate you ,u friend!