Guilt is the mental/emotional symptom that is never addressed within the chronic illness community. We talk about it amongst ourselves in secret in our private, closed online communities, but very rarely ever address it with the outside world — our families and friends.
We feel guilty for being sick. For being a burden. For not being able to accomplish tasks that people want us to do. We feel guilt for canceling plans. For not being able to support ourselves. For not being able to support our families. Guilt for being a shell of our pre-illness selves. We feel guilt for being unreliable, undependable. We feel guilt for not being strong enough, energetic enough… Just not enough. I’ve seen women in these support groups call themselves “a low value person.” We feel guilty for not being the spouse or parent that our families deserve. We worry that they resent us and regret the vows of “in sickness and in health.”
We wonder if we could be pushing even harder, doing even more, ignoring the pain, pushing through the fatigue, even though we already feel like we are at the end of our ropes.
We avoid dating if we are single because we don’t want to burden a new person with our disease. We avoid having children because we don’t want to pass the gene on to future offspring.
We regret the friendships that we have lost because we are no longer as active and social as we once were. We regret the fact that we watch our children go through the same things as us when they are diagnosed with our illness too.
We feel ashamed of the amount of money that is spent on our health insurance, doctor’s visits, ER visits, medications, and treatments when we know that money could have been used on so many other things.
We hate that we have to ask for help on such simple things as opening a jar, tying our shoes, washing our hair. We hate that family gatherings have to take our needs into consideration. “Can’t go to the amusement park, because Jane can’t ride the rides anymore.” “Can’t go to that State Park for a hike, because Joe can’t walk that far.”
We hate that it is so hard for people to understand our illnesses. We hate that we barely understand our illnesses and what is going on with our bodies. We hate that our doctors don’t have answers or cures. We hate that we can’t predict what is going to happen. Will we have a good day or a bad day? Can we RSVP to that event? How are we going to feel on that day?
What I want people to take away from this blog, other than just the “me too… someone else gets how I feel…” I want our families and friends to realize that it isn’t just the physical symptoms of our disease that we battle every day. There are so many mental and emotional things going on inside of us. We hate feeling that we are letting you down. We hate feeling like we are a burden that you have to carry through life and take care of us. And these thoughts and feelings are just the tip of the iceberg. I didn’t even touch on the loneliness and depression that can accompany chronic illness. I’ll save that for another day.
Be gentle on us. Be forgiving and understanding. But be our cheerleaders too. Let us know that we are still loved. That we are still capable and that you still believe in us.
And chronic illness warriors, be gentle on yourselves. You are fighting a battle that only you understand and only you can fight.
Fight on and Keep Kickin’ AS!
This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.