I’m not the kind of person to find joy in filling out forms and yet having a chronic illness like lupus sometimes results in the need to fill out forms. Forms for exemptions from things. Or forms for accommodations for things. Sometimes the filling out of the forms for an accommodation due to health hardship is ironically enough a hardship in and of itself.
Not only is the filling out of the forms to be a challenge when your hands hurt and your head can’t seem to make the thoughts connect, but sometimes the questions themselves hurt. Questions like “how different is your life now versus before” or my all time favorite one “how has your disability impacted your life/quality of life”.
I understand that these questions are important, but when they are asked, it’s as if you are confronted again with all you have lost or had to adjust to as a new normal. Sure on a day-to-day basis I am still dealing with these changes, but I’m busy trying to get through as best I can so I don’t take a close look at the loss in my life.
Being asked these questions is the same as shining a spotlight on what feels like my failings. I did not ask to have days where pouring a cup of coffee seems to be the same type of challenge as climbing Mount Everest. I do not enjoy realizing that the long hikes I used to take are just that, things I used to do. I am no longer able to do that. And I certainly hate to remind myself that in my life, daily pain and medications are the norm now. I hate being reminded that I carry out a ritual every week, one that is necessary to save my organs, but also means putting toxic substances into my body that most people will never take for the rest of their life if ever.
And that’s the rub with lupus and other chronic illnesses, you are in a state of struggling with your new normal which can change on a regular basis so you never fully mourn your losses. Instead you are harshly confronted with your losses now and then after you think you’ve done a decent job of filling in some of the void made by the changes.
Thankfully the form I had to fill out today, the one asking me what my life was like before my condition changed and how have those changes impacted my emotional, physical and spiritual health was one on the computer. Otherwise it may have been sent in with a few watermarks of my own…tears that is.