guilt | Arthritis Information

 

Have any of you experienced a sense of guilt about your RA? My RA is "aggressive, severe and unresponsive" according the my rd.

WHY??

I sometimes find myself feeling guilty ...like I've done something wrong to get this. Or that I'm not doing enough to feel better. Or that I'm not positive enough about everything and it's making me worse. Maybe I'm exaggerating my symptoms...or maybe I'm just trying to get attention. Can anyone relate to any of this?

 

Nancy, you have described exactly the way I feel alot of the time. When I feel like just doing nothing, I think, am I just making up excuses? Maybe it is not that bad and it is all in my head. It is such a difficult thing, because RA is, in many ways a silent disease.  The only symptoms for many of us are pain and fatigue which are both subjective symptoms. They exist because we say they do, and sometimes cant be proven. It is enough to make the best of us doubt ourselves. And when you find things in life falling apart at the seams because of what you cant do, it is easy to blame yourself.

My wonderful friends here have told me in the past that I should not feel guilty, and that I should not blame myself...but it is not an easy feeling to totally dismiss.

Knowing that the rest and the extra breaks are justified helps, but I havent figured out how to totally get rid of the guilt. All I can offer you is the knowlege that you are not alone in your sentiments.

Namcy, I feel that way many days! I was just DX in April of this year and I spent most of the time after that trying to figure out what I did wrong, what I ate too much of, what I did not do to stay healthy. I have been into health and alternative health for over 25 years. I owned a health food store. The one thing I can say about RA is "it's no respector of persons"..anyone can get it, even children.The memebrs of this forum have really helped me to see that I did not cause the RA! It has changed my life so much, and I sruggle every day to see the positive. I have slowed down, I do see life diffferenly now. I have gone out without makeup and been somewhat okay...I apprecaite my freinds and family so much more now. I've learned to delegate and I'm sure there are more lessons on the way. Life is the school, love is the lesson..
Nancy,
I feel like that very often. I've had RA since age 10, but have
been off meds until a severe flare recently. I had to quit my job,
putting more pressure on my husband. I have difficulty doing
little things around the house because I am always exhausted
or sick from meds. I know that the people close to me don't think
that I am lazy, but I always feel like I should be able to suck it
up, even though I know I can't. My tests have always been
negative too, which makes me feel like it might be all in my
head (even though I can't fake the swelling and nodules). I
think the best thing to do is just focus on trying to get better and
maybe get back some of what I've lost. Just know that you are
definitely not alone!!
          Do you think that this is just part of being a woman?   We are after all the cement that holds the family together and when we can no longer do what is expected of us, we feel guilty.   I bet that there is not a woman on this board that does not feel guilty.  And dammit it should not be that way!  Society has us locked into that feeling of "do it all".  I even feel guilty because of the high cost of all of my RA meds.  It does take it's tole on the budget.  I also feel guilty because I have gained weight from taking prednisone.  OMG, am I guilty or what??


Here's the deal from my perspective.  I didn't cause, it, I can't cure it, but with the help of medications and God, I can control it.  Guilt NEVER plays a part in the equation for me. 

I like this quote about guilt:

"Guilt is really the reverse side of the coin of pride.  Guilt aims at self-destruction, pride aims at the destruction of others."

And no person or  circumstance can "make me feel guilty."  Guilt is an inside job.

Jeanne
I too feel guilty a lot of the time. Partly because most of my family think it's all in my head. My immediate family who see me everyday understand that I did not cause this, but my extended family who see me maybe once a year are not very supportive. They were there for me when I had skin cancer surgery but they have no idea how much daily pain and fatigue this disease brings. I remember the surgeon who operated on my face told me that skin cancer was nothing compared to RA. I might add that it was a stage 8 cancer that took 12 hours and a skin graft to fix. I feel guilty when I use my handicapped parking placard because I don't always need it. But sometimes I really do.We have to validate this disease ourselves. It's hard to do because not too much is known about what causes it, so the potential for blame, our own , or others, is always there. We can only do what we can do each day. You did not cause this disease.

now&then...

I can officially say, I am of the female sex and I feel no guilt.  Atleast as far as my RA and ability to do my work goes.  I didn't do anything to cause this and I don't feel guilty when I can't work or get my chores done on time.  Frustrated, yeah!  Guilty?  No.

However, I do feel bad for passing on my horrible genetics to my son who was diagnosed with Type 1 Diabetes in November...another autoimmune disorder.  I don't dwell on it, as I didn't know I was an RA timebomb before I got pregnant with him.  I always knew he would get something, just never envisioned T1!  But, of the autoimmune disorders that is probably one of the better ones for a ten year old.

Heavens, all - the pain is real. I have moderate RA, which means at this point, I can walk, carry, vacuum, clean, drive, scrub...do everything you all think you should be doing.

But...I remember ever so clearly last December when every time I would try to stand up, I'd scream in pain. How I couldn't walk across a room. How to flick a light switch was agony. I remember it.

You're not faking anything. And I know it can come back like that at any time. The constant pain that nibbles at my feet and hands lets me know it's still there. There's a huge different between pain -- and agony. I'm in pain, many of you are beyond that.

Don't feel guilty. Why aren't the people around you feeling guilty that they're not doing more to ease your suffering? Why aren't they feeling guilty that they ask you to do stupid little things when it hurts you so much? How clean does your house have to be, anyway? Who says so? Turn it all around, because your guilt is someone else's indifference or impossible expectations. If you're like me, and medicine can make you feel better, you can always go back to cleaning, driving and cooking. And if you can't? People around you will manage.
Hey Fiona, ya wanna come stay at my house for a few weeks??? Crunchy, I'll be right over. Unlike you, right now I can make good use of that frying pan.

Here's what erodes my guilt... those moments when I'm in the doctor's office or the hospital or the ER room.. and the doctors have that terrible look of concern on their face. Those moments, when if they had not treated me, just then, I wouldn't be here.

When I pick up that plastic rheumatoid hand in the doctor's office or I see someone already confined to a wheelchair, my guilt goes out the window. I learned the hard way that I am the only one that really gives a damn about whether or not I am well and able to take care of myself. So, if I am the only one, I'd better do a good job of it.

Sure, I have some family and friends (mostly on the boards) that support me. But it isn't enough. I gave up on having a clean house. How important is it? It needs to be sanitary enough to live in. It doesn't have to be Martha Stewart's show place. And, if any one coming in it can't deal with it, they are invited to either clean it up or walk out the door. But if I need to rest, I'm going to rest.

I was raised very religiously where every new problem was a consequence of some past sin. And surely, I have sinned enough as anybody my age has. But this is not put upon us because of wrong doing. It is an illness. A cold is an illness. The difference is that you can treat a cold and you get better. With this, it isn't necessarily so. And, it is a punishing disease.

You literally feel like you are being beat upon all the time. And it takes things away from you, precious things like time with your family, the ability to work, fun things that you loved.

So, you feel like you are being punished. But I've found blessings in this illness too. It's made me a different person inside. I've learned a lot more about compassion. I've learned to prioritize my life. I've learned to keep negative, draining people out of my life and let positive people in.

I get a real kick out of a good day that most people would let go by unnoticed. My friendships are deeper and stronger than they have ever been. I more aware of who I am and what I want.

The RA is what is happening to me, it isn't what I am. If I got hit by a car that was racing through an intersection, that wouldn't be my fault either. But my body would still be hurt. And, life would have to change.

So, life changes. It is what is supposed to happen. As young people, we think we can be invinceable. We never hear the warnings that when we are older, it may be harder. But it is. And, some of you are very young. What could you have done to possibly deserve this?

Guilt comes in the beginning years, when you are adjusting to this disease. But the guilt will fade as you grow more determined to have the best life possible.

Guilt, dust it off. That's all it is, dust to be swept away. The reality is that you are sick and you have to deal with it. The whole world not wanting it or accepting it is not going make it any different. Taking care of yourself is.

QUOTE FROM FIONA AS FOLLOWS:

Don't feel guilty. Why aren't the people around you feeling guilty that they're not doing more to ease your suffering? Why aren't they feeling guilty that they ask you to do stupid little things when it hurts you so much? How clean does your house have to be, anyway? Who says so? Turn it all around, because your guilt is someone else's indifference or impossible expectations. If you're like me, and medicine can make you feel better, you can always go back to cleaning, driving and cooking. And if you can't? People around you will manage.

Fiona, why in heck didn't I think of it this way??!!  I can tell you right now that I am changing my way of thinking and feeling right now!!

Thank you with a hug Luv, N & T

Thank you all for making us feel "normal" in our feelings and suggesting great ways of dealing with the guilt and the guilt of others.

 

Never felt guilty about any of it.  Didn't ask for this and not my fault.  Was just pissed that it happened to me.  But now I'm doing great and thank my lucky stars for that!  My guardian angels are watching over me!

Susan

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