Guilt of gulf War Illness

Many of us know of the 5 stages of grief-
1) denial 2) anger 3) bargaining 4) depression 5) acceptance.
While we may experience these stages of grief for the loss of who we once were,
(pre-chronic multi-sympthom illness (gulf war syndrome)
there is something else we also have to learn to live with -guilt.

I am so sick & tired of reading how we shouldn't let our illnesses define us- this advice must come from someone not living with a chronic illness. By the loss of abilities, mobility etcetera we are defined in a way. Our society seems to brand people by what they do- that is how we are defined "the lawyer", "the computer guru", "the army girl" have somehow now become "the gal with GWS" or "the migrainer" & so on.

Often if it is migraines, IBS or fibrobyalgia or chronic fatigue brain fog
and all things with non-measurable intensity, our character is called into question. Are we just lazy or drug seekers or hypochondriacs? The more I try to explain what I have & why I can't do this or that, the guiltier I feel. This year for the first time I missed my children's school-open-house, my husband went in my place. While I'm happy he had that chance to bond & be there for them & in a way my inability opened a door for him, I still feel guilty that my illnesses left me unable to attend.

I've heard of survivor's guilt in car accidents or such, but I've not heard anyone clearly address the guilt of a sufferer of chronic illnesses. I constantly feel bad for letting down my family & needing others to pick up the slack. Yet, if I had become disabled with a visible illness or due to an accident, I wonder if I'd feel guilty? It wouldn't be my fault, whereas a lot of common misconception about chronic fatigue, fibromyalgia, GWI, migraines, etc is that we need to learn how to deal with stress, it's our fault for not coping with things better, it's in our head, etc. Perhaps I am carrying this relic of a burdon due to being diagnosed in the early 90s when these were fairly unheard of health issues (excluding migraines).

Even now, however, explaining pain without actual damage to the muscle tissue invariably generates the somewhat reasonable deduction & question of, "So, it's all just in your head?" There's another scoop of guilt heaped onto my already full plate. Then it is usually followed with, "Just power through it" or "have you tried vitamins?" & other well meaning yet equally upsetting advice.

From my perspective I've gone through every stage of grief, I seem to play hop-scotch between all 5 stages in no particular order, but guilt always remains. If I am at stage 5-acceptance, is that further weakness on my part? Is my soul giving in & giving up the fight? Or, am I more prepared, "I have these diagnoses, I know these are my limitations, here is what I can & can't do." Either way, more guilt comes wrapping its arms around me in the tight embrace of an old friend who knows me much too well. And the added burdon of being a mother comes into play.

My children do not know the healthy me. Are my children forming a misconception of women & mothers based on my inabilities & fatigue? There is a huge burdon of guilt in that question alone if there was no other guilt elsewhere, that alone would be more than sufficient to drop an elephant with its weight. Are my children seeing their friends' mothers jogging & volunteering & gardening while I lay on a heating pad or take a nap-what must they think of me? I feel burdonsome, neglectful as a wife & mother, I feel nearly valueless, so empty but for the fullness of guilt for not doing more.

Maybe once society accepts certain chronic illnesses with more legitamacy, maybe I will be able to as well & stop questioning whether this is all in my head. maybe then my old friend, Guilt will loosen his embrace.

Another complication is my youthful face. I don't mine when the general public notice this - yet the medical coummunity have mis-handled me by judging me less 30 years. I once heard an anaesthesiologist shake after a procedure saing " Jesus I did not know how much I misjudge this woman age - maybe I gave her too much anesthesia! When I open my eyes he said, lady when did you stop aging?

VA compensation will never cover this lost. Yet my military training tell me to suck and drive on.