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Arthritis and the Guilt

A reader writes that she is in so much pain and is so tired, she feels wracked with guilt. Dr. Laurie explains why guilt has no place in an arthritic's life -- and how to cast it away.

I heard from Ms. Mensicus again -- she received a question from a 50-year-old woman who is in so much pain from her arthritis that it hurts to walk across the room.

The writer tells Ms. M that she finds she is pushing her spouse away, and feels a great deal of guilt that she can't be the companion she used to be -- all because of the pain.

What do we do about pain and guilt?

That's a good question, and a hard question.

 

It's a good question because so many of us deal with this.

It's a hard question because it has so many facets.

 

So, what do we do?

Have you explored every avenue to reduce your pain?

Now that may seem heartless or obvious, but I have been with so many people who run out of energy to keep trying. It's a lot of work to make appointments, go to see the next doctor or health worker, do whatever has to be done. Some medications have icky side effects. And sometimes we don't do what helps us feel better -- exercise, eating right, and taking the medication, to name three basics.

But when you have a disease that brings pain, you have to say "OK, this is now my job. This is my daily work -- to take care of myself." I have seen people who take great care of others, and ignore their own needs for rest, nutrition, and regular appointments with health professionals. They then wonder why they have so much pain.

Put yourself first.

I know -- that's counter-intuitive when we're dealing with guilt, because we think that putting others first is the way to feel less guilty. But when you have a close friend named PAIN, your needs have to be dealt with.

What do you need in order to function well? You may have to change some of your old habits. You may need an hour to put your legs up before you make dinner. Your shower time may have to be moved around. Others in the family may have to pitch in more -- and by the way, that's good for them.

Making space to take a deep breath, to take your time, to build in flexibility can make a difference in your mental and physical outlook.

Now, you can think about the person you live with and love.

We think that we put the other person first -- but when you have a demanding diagnosis and a daily battle, you have to figure out what works for you. Then you have the inner resources to look at the person you live with and love and listen to what their needs and desires are.

Often the guilt we feel is about doing things differently.

It's less guilt and more about refusing to accept that life is not the same.

Our friends and family may have already accepted that. So we need to catch up, and let them give to us. Receive the love and care they offer.

Refusing that care out of "guilt" is just bad manners, and a desire not to be vulnerable.

Sometimes our family and friends do need us. And we can't be there the way they want us to be.

There are those times, and they aren't often, that someone we love does need us, and we don't feel well enough to respond.

That does feel lousy.

Guilt is an indulgence and an unnecessary hair shirt. (Remember the stories of the heavy, itchy, hair shirts that monks wore under their clothes so they were never comfortable -- something was always bothering them? This practice was supposed to make them more conscious of God's presence. I think that practice really made them feel like martyrs and victims -- not to mention cranky.)

Wearing your guilt like a heavy itchy vest is similarly unproductive.

When you have let someone down, all you have to say is "I'm sorry." Or "I wish it were different and that I felt well enough to really listen to you, or take you to the mall, or go to your holiday office party, or whatever the thing is, but today, I can't. You know I do love you and I am grateful you are in my life. Thanks for being here."

Then you let it go.

It's not your fault for not being able, and it's not their fault for wanting something from you. It just is the way it is.

If none of this helps, and you still feel lousy with guilt and depression, it's time to take a bigger step.

We all know that depression goes with pain and this disease. If nothing you do makes you feel any better, get a professional who can listen to you and be with you.

You don't have to figure it out all by yourself.

There are ministers, rabbis, social workers, nurses, psychologists, and some of us even have sturdy friends who can help us sort through the maze of feelings and worries.

But talk to someone, and if you need a little chemical assist, that's OK, too.

The main thing is to have a life you want to live. Finding a therapist or joining a group or even taking anti-depression meds can be a short-term effort that leads to a long term payoff. You are worth the effort!

 

To send Dr. Laurie your thoughts:

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Wow....I feel this could be me!

Posted by Stephanie Easter at Dec 01, 2008 05:05 PM
I am often so full of pain that sleep is my only refuge.
I have pushed my significant other away because i just can't be touched and feel less then a woman.
All the forms and appointments that I have been going to over the last year do feel like a job! After 24 years I have gone out on permanent disability.

Wow....I feel this could be me!

Posted by Dr. Laurie Ferguson at Dec 01, 2008 05:11 PM
Dear Stephanie-

I am so sorry you have had to deal with so much pain...
Yes - taking care of yourself does become your job. I hope that with disability you will get some time to and for yourself, and that someone can help you with pain relief..
Dr.L

Wow....I feel this could be me!

Posted by Stephanie Easter at Dec 01, 2008 05:23 PM
Thank you Dr L

Wow....I feel this could be me!

Posted by TessaD at Dec 03, 2008 08:47 PM
Dr. Laurie,

You know my long story of battling this disease everyday, year after year. You summed this up so nicely. I would like to address Stephanie if you don't mind.

Steph, After 33 years of dealing with the chronic pain and the swelling and yes putting everyone else' needs before my own, I finally broke for other reason and sought professional help. It was the best thing I did for myself.

What I learned from a few years of therapy was what is important in MY life, who is important in my life. I used to have many friends (so called friends), those that are still in my life now are the ones that understand I also have those "bad" days and everything is not just about them. By realizing this I was able to rid myself of the "GUILT" associated with not always being able to help everyone else. I have found a new way to help others and I help those that need the help, that want the help and are understanding on the day's I can't and understand why!

During this time I have given up on friendships that were 20 to 25 years in the making. I walked away because they didn't want to understand ME and it was only about them, the first rule is YOU come first if you can not care for yourself how can you possibly take care of someone else.

I lost my father 4 years ago to cancer and during that time I felt as though it was my job to take care of him, and in all honesty it was and I did what I had to do to make him comfortable. During the entire time of me having to get him dressed, bathed, medicated in and out of the car for appointments he was the one that would look over at me and say, Tess are you taking care of YOU! (He was a very giving man and I learned a lot from him, bless his soul).

These diseases suck the life out of us, we have to pace ourselves and determine what do we want to spend our energy on that day, because once it's all gone that's it we are down for the count!

I keep a daily health journal to pace myself and so my family can look at what I have done and they know what they need to finish up for the day, such as the dishes or make dinner.

Do not push your loved one away let's chat about how you can be touched again, and how to plan it and have key words that your partner will know it is okay and when it is not. It will change your feelings of guilt, it will help to remove some of the tension in your relationship around the disease.

There are things we can do to ease these pains and manage them without giving up life! Because that is no way to LIVE, we only get one shot at it and this is the burden we have to endear but who says it has to be totally difficult.

Let's do something so it's not difficult for ourselves and share our experiences with the rest of our Creaky friends!

Sorry off my soap box.
Tess

Wow....I feel this could be me!

Posted by Dr. Laurie Ferguson at Dec 03, 2008 11:31 PM
Thanks Tess - you really know how to give a powerful message!
Thanks for sharing your hard-won wisdom.
Dr. L

Wow....I feel this could be me!

Posted by Stephanie Easter at Dec 04, 2008 11:34 AM
Tess,
You are amazing, so passionate. I feel bad that my ordeal has only been going on the last two years. I can't imagine 33 years!
My main purpose now is taking care of ME.
I have my immediate family who helps me. I am taking it one day at a time and fighting the different government agencies.

Thank you

Wow....I feel this could be me!

Posted by TessaD at Dec 10, 2008 12:22 AM
Stephanie,

Do not feel bad that you have only been suffering for 2 years. You are fortunate that it has only been. The only difference between someone that has had one of these diseases longer than someone else is, time. There are some that have had these diseases for many many years that are in much worse condition and those that are not.

Remember RA can literally take away your mobilitiy in less than 24 months all depends upon the person and the severity of the disease when it rears it weary head.

Yes, I have dealt with it for 33 years though I don't know any different, I feel for those folks that had "Normal" lives and then are struck with these diseases, my heart goes out to them because it is an major adjustment.

Me, I told my doctors at the age of 18 that I would control my life not this disease. (shh don't tell them sometimes the RA wins). Now I ask the doctors what else can I do to make it slow down versus it slowing me down.

I have a hard time writing how I deal with it as I told my boss: It is what it is, you just have to keep going because it beats the alternative.

Remember, I am here if you need someone to vent to on how I handled some of my approaches. I am not a medical Professional like Dr. Laurie (One of the Kindiest people I have ever met), though I can share my experiences.

Dozey and I chat on Yahoo all the time and she is in England and I am here in the states, there are no boundries to the Creaky Friends!!!

Here is to a pain free days!!!

Tess

ps: I can't spell

Wow....I feel this could be me!

Posted by Stephanie Easter at Dec 10, 2008 02:31 AM
Thanks again Tess for your words of encouragemnet.
And don't worry...I think this cyber world has killed all our spelling..lol
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