Saturday, December 13, 2008

I thought you were my friend.....

Have you noticed that Chronic Illness changes your relationships? It’s sad, but true. It can happen. Things just aren’t the way they once were and neither are your friendships.

I remember the first time I realized that my friendships would never be the same. I was talking on the phone with a close friend. We talked almost daily. She knew what I was going through. She knew the difficult time that I was having adjusting to my “new life”.

I told her that I was exhausted. I was afraid of what was going to happen to us, financially and spiritually. I shared that I was really sad and didn’t know if I could do this for another twenty years. I had just spent 15 minutes sharing my deepest feelings with her. As I talked, she said all the right things. I’m so sorry. I know. I cannot imagine. Right….

As I finished up my last few words, she said, “Man, I know what it’s like when things are hard. We are having such a hard time right now. We were looking at tile for the kitchen the other day and can’t decide which tile to get. See, I like the one with some brown in it and hubby likes the one that has more white in it. I hate it when we can’t agree. It’s just so stressful right now.”

That is when I realized, she just didn’t understand. I didn’t get mad at her, not really. I just felt an overwhelming sense of sadness. She just didn’t get it. It wasn’t her fault, but it hurt. I felt alone.

A few months later, needing a break from the routine, and just needing to get out of the house and away from the care giving, I went to a friend’s house for a few hours to help her pack. They were moving, and I knew that I could pack without having to really think. I thought that I had my emotions under control, but found out I didn’t. There were about 4 of us there, helping our friend.

As we chatted, one opened the conversation with, “And how are you doing?” I thought one second and decided to be honest. I told her that I wasn’t doing too well. I began to cry and told the small group of friends, people I had known for about ten years, I didn’t think I was going to be able to do this much longer. I needed help. I was talking of the sadness, the loss, the change in roles, watching my husband’s disease progress, seeing how this illness was affecting my children, the entire gamut of emotions that you experience when you face chronic illness and disability.

She looked at me with the strangest look on her face. She said, “Do you need help with housework? Is that what you’re talking about? Aren’t your kids old enough to help out?” I couldn’t believe that she would think I was concerned about housework. Who cared if the house was clean, the laundry done? I was dealing with real life issues and she didn’t understand. I remember walking away that day feeling more and more isolated

Sure, my husband looked ok, but didn’t everyone understand what a diagnosis of Progressive MS meant? Hadn’t they seen the commercials when they were younger that talked about MS being the “silent crippler”? They knew my husband’s diagnosis, hadn’t they understood when we talked right after we got the news, what this would mean to our family?

You see, we told everyone right after the diagnosis. Within three years of the diagnosis, he was no longer working. This is where we were. Our friends knew he wasn’t able to work. They knew he was home full time and needed a wheelchair and needed someone with him 24 hours a day. It was obvious that things had changed. We had already begun turning down invitations to friend’s homes. We’d stopped attending church regularly, we didn’t go out to dinner, to friend’s homes, and had even started having holidays at our house, because it was just easier than going to mom’s like we had our entire married life. I’d stopped teaching Sunday School and my husband had really struggled the last few times he had preached. Our lives had already changed drastically.

I walked away from that day, knowing that I would never have the same relationships with the people in my life. As much as they tried, they would never fully get it. They loved us, they hurt with us, but they didn’t really understand. And, that’s ok. One who has never walked this path will ever get it.

Then, one day, as I was thinking about people we had known and hadn’t seen in a while, I thought of Anna (name changed). She would understand. Her husband had been ill for quite a while. I wondered how they were doing. Maybe I could get some advice, some understanding from her. I worked up the nerve and called her. I was amazed at how easy it was to talk to her. We struck up a renewed and different friendship with one another. As we talked, I realized that she was struggling just as I was. She was exhausted, worn out, worried, frustrated, and felt so all alone too. We decided to meet for lunch. And, thus began a friendship with my “Tough Life” buddy.

While our husband’s illnesses were different, the emotions and struggles were the same. We understood the frivolity of kitchen tiles, and knew what it was like to see your husband change right before your very eyes. We decided this was something we needed on a regular basis. I enjoyed our time together and we discovered that neither of us could really enjoy meeting our former friends for lunch like we once did. Things had changed. We had such a difficult time relating to them. We both felt like we had nothing to talk about. I was almost at the point where humor was unheard of, unless it was black humor. Finding the humor in things that are normally not at all humorous. Laughing at death, disease, and our inability to think clearly. These are things that most people would be offended by. And yet, we decided, you laugh or you cry. And we were the only ones who could laugh at our situation.

We decided that we were good for each other. We developed the kind of friendship where we were able to look into each other’s lives and see things that maybe the other had overlooked. Many of our sentences began with, “have you ever looked at it this way” or “maybe you should” or "no, that's not crazy, you're thinking clearly here". And neither of us was offended by the advice given. She had a right to be in my business, to offer advice. She had walked the same path, she had been to the brink of the pit and she understood. There was no accusation in her voice, no lack of compassion, no cluelessness here. She got it. She cried with me and said, “What are we going to do?” Our answer was the same, we didn’t know, but we knew we would survive.

As I began to share my heart with someone who understood, I began to see my other friendships for what they really were. They were links to the past….friendships that were built on common ground. Homeschooling, children, church, family, all the things that had changed so drastically in my life. Homeschooling and little activities were no longer high on my priority list. Sure, I still had to do those things, but much less of my time and thought was devoted to them. Do the basic requirements and move on. We couldn’t even attend church regularly. Everything was different. It wasn’t anyone’s fault, it just was.

Once I found my “Tough Life” friend, I realized that my other friends could still have a special place in my life. It would always be different, but I still loved them and they still loved me. Honestly, casual friendships drifted away and I was left with only 3 or 4 close friends. Our “Couple Friends” weren’t there any more, and that was ok. It’s hard to keep those friendships alive. I can still share my heart with my friends and while they don’t get it, they do get that it’s tough. Maybe they are grateful it’s not them. Maybe they think I’ve lost it. It’s ok. It is what it is. When I do spend time with them, I sometimes feel like an alien, but I’m learning to roll with it.

I’m beyond the difficult days of being sad seeing them live their normal, everyday lives. I no longer cry when I hear of their plans to go on a family vacation. I no longer tear up when they talk about their daughter’s wedding, realizing that my husband won’t be able to walk his daughter down the aisle. I no longer hurt when they discuss their retirement years. Yeah, our lives are different, but it’s ok.

Maybe you still have great relationships with your friends…but maybe it’s time to search out new friendships. Try going to a support group meeting. Attend a caregiver’s conference. Look around you and see if there is someone out there who understands.

It takes a while to adjust to the changes this life brings and if you can find someone on the same side of the struggle, it will make the adjusting a bit easier. No one wants to feel alone….so even though it’s hard, follow the advice of scripture. “A man that hath friends must shew himself friendly: and there is a friend that sticketh closer than a brother.” Proverbs 18:4.

Make an effort to show yourself friendly. You’ll find a rare treasure if you find someone who walks the same path as you.


Megan said...

How true this is!! I try so very hard to never pretend to know what people are going through because it is true you do not know unless you are there in the middle of it yourself. I have found myself gravitating to friends who are also in the throes of difficult situations and don't have a lot of people I hang out with in addition to those few. Although none of them are going through quite the same thing they all have similar enough circumstances to understand generally. It's also amazing as I go along how many others God brings into my life in similar places so that we can give a small bit of encouragement to each other. Just knowing someone else has the same type of problem is helpful!! TN said...

Thanks Paula, I know exactly where you are coming other words....been there, done that! Our friends are few and far between. I have ONE really close friend that was care giver for her Mother for several years. She knows more than any one. I have an on-line support group. This helps but it isn't like talking to someone face to face.
And I got the book from the library reading it already.

Nanci said...


I can't begin to understand how you feel, not having ever been in your shoes but I feel the pain in your words and thank God that you have a Savior to lean on. I always wonder how people without God get through these trying days in life. My parents are in their mid 80's and only beginnnig to slow down but a good friend of mine just published a book "The last gifts" and it's about Hopice care and I decided to start reading it so I would be more prepared but have already found that you can't ever be fully prepared for the change illness or death can bring into our otherwise sane life. I commend your taking such good care of your husband and I know he must treasure that. May God bless you with peace and hope, the kind that only He can offer. I'll be thinking about you and offering up prayers this holiday season for you.

W. Latane Barton said...

I find that people who are in like situations are the best support. As you said, the others just don't get it. And, I hope that they never have to be in my shoes. I am thankful every day for what I do have as I am sure you are too. I wouldn't trade places.