“Both abundance and lack [of abundance] exist simultaneously in our lives, as parallel realities. It is always our conscious choice which secret garden we will tend." - Sarah Ban Breathnach

Monday, December 7, 2009

My Support Sytem: Are You In or Out?

You are not in my support system just because you love me.

I've noticed that the people who love me fall into three general categories. (I'm very left-brained. I categorize.)

First, there are the people who believe I am sick but think I'll get better. These are the ones who approach me with the worried furrowed brow, pat me on the shoulder, and ask with pity, "How are you doing today?"

Second, there are the people who believe my illness is psychological. They think that if they pretend nothing is wrong with me, I'll eventually catch on and agree with them. They are the falsely cheerful, "Hey! It's good to see you! I'm glad you're out doing something! You look great! ... ! ... !"

Third, there is the rare and amazing gem -- the person who understands. They believe I am sick with a real disease. They recognize that it is called "chronic" for a reason. They accept that it's not going away. They realize that I now have limitations and need to alter my activities and the way I live. They embrace my new normal and find a place within it.

These rare gems are my support system. My husband is my greatest and most reliable support. Because of him, it doesn't matter how small the rest of my support system is. Without him, I would certainly become depressed, go to bed, curl up in a ball, and stop living.

I don't want anyone to think I'm pointing the finger at them. If you're not in my support system, it is my fault. I've discovered I'm not very good at communicating this disease to other people. I've seen so many puzzled looks when I've tried!

So, if you want to join my support system -- follow my lead. If I am with you, it is because I am well enough to be there. Embrace the moment and enjoy it for what it is. Make me feel normal, like the same person you've always loved, but lower your expectations and be flexible. Notice if I seem to start to "fade," and make it easy for me to leave or take a rest without feeling awkward. Don't expect me to be too reciprocal. And don't forget me.


Hege Renate - said...

This post was great. I could not have said it better my self. It looks like it is the same for matter what country we live in.

Sue Jackson said...

A very good post, Shelli. Can I suggest a slight variation in your categories? I shared your thoughts pretty much exactly in the first few years I was sick, and that third group was pretty small - mostly just my husband and kids. The most painful of all was my relationship with my mom, as she acted like those you describe in category 2, always falsely cheerful, trying to convince me things were OK. We finally hit bottom in our relationship after a very painful, horrible family vacation. After unsuccessful attempts to talk on the phone, I finally wrote her a 6-page letter explaining how I felt and what CFS did to me. Much to her credit, she took it all to heart and found a local therapist who works with families of those chronically ill, and we began to slowly rebuild our relationship.

And what did I learn? I discovered that most of my family did not disbelieve in the validity of my illness, as I'd thought as I felt so abandoned by them. Rather, they loved me so much that the thought of my being really, seriously ill was unthinkable to them. Some of them (my mom included) were in deep denial. Although their actions were the opposite of what I needed at the time, I came to realize that they were acting out of love for me and doing what they thought was best for me - trying to "cheer me up", encouraging me - even though these actions had the opposite effect.

The only real solution for this kind of denial, unfortunately, is time, although counseling and honest conversation helped a lot.

Now, almost 8 years later, most of my family now understands how CFS affects me.

Hope this helps...


Renee said...

A beautiful post, Shelli and so well said. Sending gentle hugs....

Dusty Bogwrangler said...

Both your post and Sue's response have given me much food for thought. I recognise the categories and sometimes see elements of all three in the same person.


Elaine said...

It's not you. It's them. I bet you heard that so many times!!! Hahaha! But it's true. Those types of people don't know how to react. They probably do that for their own conflicts as well. I'm glad you have a great support system. They always help in any situation!

Unknown said...

That post is so true! My mum is the one who truly understands my limitations, but is also the one who pushes to help me see that life is still worth living. I've just started my own blog with my thoughts on living with CFS, and I came across your blog. It's nice to read other people's thoughts. Thanks for taking the time (and energy!) to write it!

Toni said...

I just found your blog, Shelli, and really appreciate this post. I really related to your comment about the rare gem of a person who makes it easy for us to leave when we start to "fade." If someone can't be that way for me, I just can't be with them. I've learned not to blame them for not picking up on the signals -- sometimes it's because they're too self-absorbed but it might also just be a lack of skill on their part. But whatever the reason, I have try to avoid those people because the consequences to me aren't worth it. Staying in an interaction even five minutes beyond my capacity can mean days of recovery.

I also think that Sue makes a great point. Some people, especially family members, may in denial. If we watch out for that, we may be able to bring them around before we get estranged from them.

You and I are lucky. We both have husbands who fit into your third category. What a blessing for us!

It's nice to meet you.


Shelli said...

Welcome, Luckystar and Toni! I love the support I get from my CFS friends, and I am happy to count you among them.