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Posted on 9. January 2014

Constant Guilt

By Jamie Stewart.

I am guilty. Actually, I am full of guilt, which makes me feel guilty. I feel this way because of what I can no longer do. Chronic inflammatory demyelinating polyneuropathy (CIDP) has taken things from me, and I still haven’t come to terms with those changes. 

I hate having this guilt. Coming to terms with my new identity is difficult; activities that I used to do naturally now come with a cost. This cost is usually in the form of either pain or fatigue. I feel like I am letting everyone down, but mostly myself.

Some of the most stupid things cause me to feel this way. I look in the mirror and see the reflection of a quickly aging man: Fat has replaced a once-muscular body. Legs that could take me anywhere are now reduced to atrophied appendages that tire and weaken after the slightest exertion. My arms and shoulders that could once carry the weight of the world now struggle with carrying a bag of groceries. I am disgusted with what I see. I feel as though the world is disgusted with it too, and I feel guilty because I am powerless to change it. 

My mind is also losing its sharpness, and my ability to remember things is rapidly fading. There are parts of my life - adventures, important dates, names of old friends - that are gone. I used to be the master of oddball information - a Trivial Pursuit genius. Now, I stumble mid-sentence to remember my next word. My sharp wit and even sharper tongue are as flabby as my stomach. 

All of this makes me feel as though I am a lesser man. The traditional things that a man should do, I can’t. Mowing the lawn — hell any yard work — is left to my wife. The odd project around the house is now hired out. Even the fundamental thing that makes a man a man is no more, as “the act” can result in either no feeling or intense pain. No one told me that CIDP would be emasculating. 

I am constantly fearful of the meeting when I am told that my employment will no longer be needed. I work as hard as I possibly can, and many times, I overwork to compensate for the times when I can’t. I worry who would be willing to hire a broken-down 40-something if I lose my job? How would I support my family? Would our bills get paid? Will my wife see me as a failure?

All of this contributes to my guilt, and I don’t know how to shake it. I know it is a part of my new normal and something that I need to work through, but it’s not easy. Society has always rewarded the strongest man. My internal drive still tells me to push hard, but my mind and body fail me.

I am learning to work within my limits, to accept my shortcomings. There is no guidebook or literature that tells someone how CIDP will affect them. Trust me, I have read every article and study, and have talked with other CIDP sufferers, but we are all affected a bit differently. There is a term called classic CIDP, which was defined in 1976, but truly none of us are classic. We are medical zebras with individual struggles, some more than others.

I do know that I will continue to fight, and that keeps me going. And, if I ever get the upper hand on this damned disease, I promise I won’t feel guilty about it.

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Comments (7) -

Barbara Havens
3:54 PM on Thursday, January 09, 2014

I have CVID.  This immune deficiency has changed my life.  I feel like it controls what I do and where I go and when I go.
Cautious of being around people that may be sick.  I feel fear and guilt.  Fear of getting sick and guilt from having to say to everyone, Oh I cant go there, I wish I could, but I just cant.  Worry about doing these infusions for the rest of my life.  Hoping:  hoping for the day that my immune system is built up enough for me to attend church.  Visit family and friends, go to a store and shop.
I am thankful to God for giving me what I have, and blessing me with medications I need.  God is my rock.  Without God I couldn't go through this mess.

Lisa Churinskas-Hulit
3:24 AM on Friday, January 10, 2014

Chronic disease takes so much and adds so little, other than feelings of guilt and doubt.  However, it does offer one the opportunity to reinvent the self based upon strengths one has always had but never before used, such as empathy and emotional strength.  I hope you are able to rediscover these strengths and that they are able to help you continue to grow as a person. Look at how eloquently you were able to communicate your feelings!  Were you ever able to do so with such clarity before?

Gail
2:08 PM on Friday, January 10, 2014

I know this seems trite, but you are not alone. I look in the mirror and see someone I don't know, my house, once pristine, isn't anymore, my friends work around when I feel okay, etc., etc.  When I recently asked my immunologist about what's ahead of me long term, he answered that physically I'll be okay (because my CVID was diagnosed early) but my quality of life won't be very good. I'm living with that reality but not liking it! I wish there were words that could get you out of your funk, but they escape me. I do volunteer as much as I am able and that brings joy to my life. Helping others helps me escape my day-to-day issues. If you are able, even a bit, volunteering will bring you a new perspective.

merlenz
4:08 AM on Friday, January 17, 2014

Oh my. I hear you. I feel similarly, although I am a female. I understand that people mean well when they offer advice about what they can do, but it often fall flat on me, and probably on you, too. People tell me: go shopping! go out to dinner!  have some friends over! volunteer! What they don't realize is that I am too sick to do these things, and being with people means, almost always, more illness and suffering for me. I seem to pick up viruses from people that they don't even know they have. Being isolated and losing social contacts and activities is the worst thing imaginable. I have been in this situation for a long time. I am creative-- I do Sudoku parties over the phone with a friend-- for an hour we solve one together. I write, I read. I have arranged my schedule so that various things are on various days--movie day, clean sheets day, writing day, phone day. I know it sounds pathetic, but it is the best I can do. I am learning to be thankful for my warm house, food, medical insurance, and life itself, the view out my window. And still, I understand the guilt, the loss, the grief of losing so much, too soon, with so much suffering. My heart goes out to you, to anyone similarly affected, to all of us.

Lianne Learnard
7:52 AM on Friday, January 17, 2014

Jamie,
This illness is not an easy one..  Chin up, this illness changes your priorities not only for those suffering but for those of us who watch from the outside.  You feel Guilt, I feel Helpless.  Being the mother of a 20 year old with this and feeling so helpless.  For you, my daughter and everyone else who has to find a new normal,It is not fair. I am sorry you are feeling so much guilt. I wish society would do more and accept that this and other immune disorders are just as important to cure other diseases that receive all the attention. Don't let this illness define who you are.  Create, shape and mold your new Normal, find and do what makes you happy!!!  

Bud Foucher
4:29 PM on Friday, January 31, 2014

My CIDP seems to be responding to IVIG plus aquatherapy  and physical therapy directed toward strength and balance.  I will share more if any are interested.  I am 77 years old.













Paul Gordon
8:36 AM on Friday, February 07, 2014

Hi Jamie.  I just read your post.  I am a 50 year old male suffering from CIDP also.  Your story hits home like nothing else I have read about this crap that we have.  All we can do is keep trying and trying and trying.........
It sucks like no other.  I have had the disease for 4 years now and am still struggling A LOT with all of things you describe.  Good luck and try to stay happy.  Paul

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