- emotions and CU

[Guest guest]

Hi . YOU ARE NOT THE ONLY ONE! Anyone living with a chronic illness,

especially ones that are 'hidden', have a lot of emotional/psychological

aspects to deal with as well. True, people can see hives and swelling, but a

lot of our disease is also hidden, plus of course it is greatly

misunderstood. People don't realize that chronic hives are vastly different

from allergy hives, and don't stop to think what it would be like to live

with that EVERY DAY. And many of our symptoms are hidden - you can't SEE an

upset stomach or a headache. And some topics are taboo in polite society -

you don't discuss diarrhea - 'Eww!'.

Our bodies have become the enemy - attacking us without provocation or

warning. Naturally that alone will send anyone into a tailspin. Having a

non-diagnosis like 'chronic idiopathic urticaria' does not give us something

to point to and say, " See, this is why I am sick! " We are left hanging in a

sort of limbo, and this causes people around us to be less sympathetic and

understanding. If we were miserable because we had cancer, the reaction from

others would be so different; they can understand that. We've all watched

someone slowly die from that dreaded illness (even if just in a movie),

which allows us to relate to it on a certain level.

Another thing with chronic illness, is the factor of the unknown. 'How will

I feel tomorrow? Can I take that trip I've been planning? Will we still be

able to move into that new house? Should I bother taking those college

courses?' Everything is up in the air, because no one can tell us how long

this will last. We are potentially facing a lifetime of disability due to

this illness, and that's a huge weight for anyone to carry.

Any time something negative happens in our lives, there is a natural

grieving process that we go through - many people only relate that process

to dealing with the death of a loved one, but it holds for almost every

turmoil we are faced with. The grief process covers the following stages:

1) Denial and isolation: we deny a loss has taken place and may withdraw

from our usual social circle. This stage can last moments, or longer. " I'm

not really that sick. "

2) Anger - anger at God for letting this happen, at yourself for getting

sick (self blame is often a huge issue for chronically ill people), at

others for not understanding or being as sympathetic as we would like them

to be

3)Bargaining - " If I do this, maybe it will go away. " This is stage a lot of

us get stuck in for a long time. With an uncertain diagnosis like CU, it is

very hard to get past this stage. Part of bargaining is trying to determine

the underlying cause, which many of us may never know.

4) Depression - feeling numb, although anger and other emotions may still

persist; this stage is often experienced multiple times

5) Acceptance - the final stage, where the anger and sadness and feelings of

helplessness have tapered off, and you can finally move forward with your

life

The stages occur loosely in that order, but you can backtrack and experience

some of them multiple times - especially if new symptoms crop up, or meds

stop working. The attitudes of those around us (family, friends, co-workers

and doctors) can also affect our grieving process - if they are not

sympathetic and supportive, it can be a set-back for us.

Regarding the blame issue - we are bombarded throughout our lives, told to

tough it out, made to feel that if we are too tired to do something we are

lazy, if we are always sick, we are defective. The blame is laid upon us,

and sometimes we are too ready to shoulder it, since a part of us even

blames ourselves. It's okay to be sick for a little while, like with the

flu; people will even pamper you. But when illness drags out, it's a whole

new ballgame. You get the feeling sometimes that others blame you (and some

do) for being sick - it MUST have been something you did or did not do,

eaten, exposed yourself to. Some people treat you like you are a

hypochondriac, or a malinger. 'You're just looking for attention!' Face it,

we've probably all been guilty of having that attitude about someone else

sometime in our lives. Yes it's cruel and unjust, but it's also human

nature.

Being aware of how others will react, and maybe even more importantly, WHY

they react that way, is helpful. It also teaches us something about

ourselves. And hopefully we will at least all emerge from this with stronger

characters and bigger hearts than we had going in....

Air hugs,

Jackie

Life is tough, but I'm tougher.

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