New member, how to deal with the guilt of being ill?

[Kristina09]

It?s my first time ever joining a forum. I have been dealing with health issues for a long time, was diagnosed with RA about 4 years ago mainly because my mother has RA and the drs couldn?t figure out what was wrong with me. I have recently started seeing a new rheumatologist and I tested positive for Sj?gren?s and he believes it?s not actually RA but maybe lupus. I also have IBS which has become rather debilitating. I decided to join because my life is changing and I wanted to find people to talk to that understand what it?s like and I feel I?m burdening those around me if I say how I feel rather than just saying ? I?m ok?. I?m open to any advice on how to deal with the guilt of not being able to do things I used to do with my kids, not being able to work as much and just feeling more alone than ever.

[CureSjogrensNow]

Do you trust your doctors?

[Kristina09]

I trust my rheumatologist, but one doctor will prescribe something then another says no you can?t take that take this then my rheumatologist changes it.  By the time it?s all done I?m still not treated for that particular problem. GI prescribed bentyl for my IBS. Rheumatologist said no way. He gave me pilocarpine for my Sj?gren?s. So all said and done,  No help for my IBS. I just feel like I go in circles. Does anyone ever get tired of the trial and error? It?s expensive and time consuming.  I?m sorry, I?m complaining, I?m just tired of it all.

[CureSjogrensNow]

IMO - you can never complain too much about this illness. I ask because feeling physically better will lead to doing more which leads to less guilt. You can ask here for doctor recommendations in your area. How much exercise, if any, will your doctor clear you for?

[Joe S.]

One of the hardest times with this disease is when you are getting a diagnosis. On average it takes 7 years as it is a diagnosis of elimination. Do not allow yourself to feel guilty. You did not choose this ailment or to be sick. You have been molested in a way more intimate than if your being raped. This disease attacks the glands of your body on the cellular level. And then your immune system attacks those cells.

The anxiety of when the next flair will happen and the depression of fighting to live with this chronic illness that currently has no cure can be more overwhelming than other forms of PTSD. Just today, the onset of a winter snow storm sent me to bed from 2pm to 6pm I have been feeling it coming since 5am. That is just one of the variety of symptoms that I have to randomly deal with.

When you are in pain, remember to breath. While holding your breath is a normal reaction, it causes your pain to be worse.

The anxiety cycle causes your pain to be worse so if you learn to manage your anxiety with Cognitive Behavior Therapy (CBT) that will help you feel better. The book,"Feeling Good" by David Burns gives you exercises to help you manage your depression and anxiety. I recommend it as a good read.

I take a lot of supplements to help me manage this and other diseases that I have. you can find them in my signature. Before trying any of them I suggest that you do your own research. Among other things check for side effects, drug interactions, and counter indications.

I hope this helps. most of us will respond to private messages if you prefer to communicate that way.

[Kristina09]

I can exercise more but I have an issue with my knee and I can?t have surgery right now.  I?m going to start physical therapy for that. You are right though, I think being more active would help. Right now I just work nights and sleep days, I used to be more active but since my knee hurts I just don?t, so it feels like the world is going on outside without me. This has been so helpful so far and I appreciate everyone?s input. Anxiety about flares is an issue.  When I?m getting a flare I get so mad and frustrated. It?s a helpless feeling.

[Pete0211]

I don't know how flexible work is, but getting back to a normal sleep cycle (sleep at night, be awake during the day) might help, also. Working at night goes against the body's normal rhythms, causing additional stress on your system.

[Carolina]

Dear Kristina,  WELCOME!

You have been through a lot, with a diagnosis of RA, and IBS, and now a diagnosis of Sjogren's Syndrome, and possibly Lupus.  And working nights puts stress on your body, which you are probably handling well, but cannot be totally avoided.

I've been here a while (on this forum) and presented with Immune Disorders at birth (76 years ago), so it has been a long strange trip.   

One thing I know, this is a forum with wonderful, experienced, wise members, and every conceivable condition and complication comes up here.  Nothing is out of bounds, trust me.

Now, most people with a diagnosis of Sjogren's treat the symptoms, and carry on with few problems, for years and year.   However, most of us here are among the small percentage of those with Immune Disorders who experience added problems over time, making our lives and our medical diagnoses more complicated.

Take what you need, ask all the questions you have.

1.  Keep a daily record of your health.  This will be helpful for many reasons.
2.  Simplify your life as far as possible.
3.  Be kind to yourself.  Guilt is inevitable, but useless.  Read How to Be Sick, by Toni Bernhard.
4.  Oh, don't  feel guilty for feeling guilty......we are only human, and emotions flow through us.  Minimize the damage.  Be kind to yourself.

Welcome, Kristina,

Elaine

[Kristina09]

Thank you all so much for the support, this really is a great place.  All of the advice has been useful.

[araminta]

I would echo what others have said about being kind to yourself, and if possible trying to work days rather than nights, which is a stress in itself.   Also your anxiety can make things worse - the IBS can be a symptom of anxiety - so anything you can do to reduce that will be good.   Counselling could help, and I find mindfulness/meditation useful too.

Of course none of this is your fault and it's absurd to feel guilty about it, but I think I can understand what you're saying, as personally I'm not very good at talking a lot about my symptoms.   I have told my husband that I think I have Sjogrens, and he knows I need to use various things like eye drops etc., but I don't always tell him how tired I feel.   I don't want to become a bore!   But I'm sure there is a happy medium between moaning all the time, and keeping everything bottled up, and probably you and I need to do a bit more about explaining about how things are with us.

How old are your children - are they at an age where they can give you some help?   We do need to simplify our lives as much as possible, including not taking on any extra responsibilities, and making reasonable requests for help.

[Kristina09]

I agree about working days instead of nights, I?m working on that. And I also have a problem about saying how bad I really feel, I say I?m ok or I?m fine.i completely understand where you are coming from. ( Even when I?m not at all fine or ok) is .  I just don?t want to burden anyone and I don?t like when people treat me like I?m fragile.  My children are 9 and 11 and they feel responsible for trying to take care of me.  They are very kind and caring. I?ve been very sick at times, I?ve been hospitalized many times, many surgeries, many emergencies and I try not to stress them any more than they have been. I have always been the strong one and maybe that?s part of my identity that I?m struggling with. I too have trouble asking for help. Maybe I pretend it?s not really happening when it is or that I can wish it away. Like someone said and I?m learning.  It?s a process after diagnosis.

[SjoGirl]

Ah guilt, it plagues many of us.

The first rheumatologist who diagnosed me said these words to me, which gave me great relief: There is nothing you could have done to prevent getting this disease and there is nothing you can do, e.g., food, exercise, etc. that will make it go away. Your body is attacking itself where your muscles and bones connect (it's a connective tissue disease).

Learn as much as you can, both so you know what you might be able to do to manage symptoms, but also so you can speak intelligently with doctors. I find that as long as I am not condescending with my docs if it is clear that I've done my homework I get better treatment. I have also made it clear to them that I want to have a plan, e.g., a certain med, try for x amount of time, evaluate then continue or take a new course of action.

There are also books and sections of books for people who live with and love people with chronic illness. For adults you can tell to read about Spoon Theory (look it up online, it's a great resource). It may help them understand that you are not responsible for this.

Finally, keep talking to folks here. Most of us have traveled the guilt train, heck I've been sick for 8 years and still pack a bag and get on once in a while (that or the self-pity train). I would close by saying that my spouse got tired of hearing me say I was sorry, it wore us both down so I finally quit and doing so made us both feel better.

[Kristina09]

Thank you so much, great advice. It?s so nice to have people to talk to that understand.

[SjoGirl]

Hi again,

Just found this quote on Pinterest, maybe it will prove helpful:

"Start over again my darling. Be brave enough to find the life you want and courageous enough to chase it. Then start over and love yourself the way that you were always meant to." Marilyn Beck

I have found that one way to lessen guilt is by changing how I view myself and what I expect of myself. It's a long, slow process, but I'm learning to give up some things, give in to others, and find new ways of being. I hope that if I am happy with me that others will be too and I won't feel so much guilt about not being who or what I think I'm supposed to be (or who or what others expect).

[Kristina09]

You?re right, it?s about the feeling of losing who I am, I know logically that the things I feel I?m losing aren?t really who I am, I?m myself without them but I guess because things are changing in my life, I?m having to finally make changes to my work schedule, I have defined myself by my career for a long time, I?ve been working in the field for 16 yrs. I?ve been sick before but I?ve always gotten better, had good days and bad days but now it seems everyday is a bad day. I left work early last night and I cried the whole way home.  I think that is what I?m feeling guilty about that I can no longer make up for it another day, the day I don?t take my kids to the beach doesn?t come around as often again, that all the financial stress is because I can no longer make up for the time I lose working because I don?t have a good week or month to knock out more days. It?s so frustrating.  I told a friend I feel like I?m having an identity crisis. They didn?t understand. It?s like you said. It?s a long process of becoming something new and it?s mentally difficult because I think it?s like grieving for a person lost. This disease and all autoimmune in general changes us whether we want to or not. Having this discussion with all of you has really opened me up about what I?m feeling made me think about it deeper  and opened my eyes that other people struggle like me too.