Tonight I learned about how the definition of Rheumatoid Disease has changed in the last 15 years since I was diagnosed from just “joint pain and inflammation” to include all of my vast symptoms over the last five years (including, but not limited to, cardiovascular system issues such as high blood pressure, cerebral ischemia, heart palpitations, and stroke; autonomic system issues such as muscle weakness, muscle spasms, bladder dysfunction, spinal cord dysfunction, and sexual dysfunction; neuropsychological issues such as depression, anxiety, memory loss, brain fog, and lack of focus; demyelation of nerves, including numbness, tingling, spinal cord degeneration, and things that otherwise mimic multiple sclerosis (including brain lesions), swallowing, voice box, and throat swelling issues. Chest pain that is lung related, not cardiovascular in nature and bursitis, both of which is really where I started all those years ago in high school. ).
I read study after study, all from prestigious medical journals, with associated good, data-driven citations. I skipped the small studies with 20 people or less studied because they seemed silly.
I am super angry because I have never once in the last 15 years had a doctor explain any of this to me. Some have said “Oh, you can look it up yourself.” Or “We could print out something about this if you wanted to come back for it.” (Which I did have printed and came back for and it was just a three fold flier with information a decade old on it.)
I am struggling. I have been struggling for a lot of years now. I was diagnosed when my kids were 3-years-old and just under a year old. (There are three kids now, 18, 15, and 12). People treat you differently when you have a chronic illness from people who have something immediate like a heart attack, a surgery, or cancer. If you have something like that, people bring meals, help with child care or transportation, and housework. I have helped many people with that over the years, always to the detriment of my own family, because it was expected because I was a stay-at-home mom “with all the time in the world.” But no one has time for the chronically ill. We are expected to just suck it up and move on with life because our illness goes on and on. People expect us to get used to it, somehow. No one seems to care that we have pain and other issues that make it hard to function. No one wants to help with our meals, children, or housework. We are viewed as lazy and malingering. People and organizations constantly ask us do to things for them because they think we have a ton of unfettered, pain-free time to ourselves.
I am both angry and tired. It doesn’t actually get easier, despite the time I have had to get used to my situation. People are always assuming I have the time and energy to do everything I need to for my own family, plus whatever they don’t have time for because they work full time. I wish I could work full time. I wish I had the luxury of a healthy life. I envy people who can work full time and still take care of their kids and make dinner and run errands (and some of you even work a side hustle. How energetic!). You get these amazing, full lives. I stay home a lot. I have to sleep and rest just to be able to do the bare minimum. I don’t even shower as often as I’d like because it wears me out. It is frequently (read daily) boring and painful and I don’t wish it on anyone, not even people I’m angry with or who have hurt me immeasurably. I like to be positive and to share the good parts of my life with y’all.
I’m not looking for help or pity or anything else really at this point. If you were going to do something for my family, you’ve either done it already or chosen not to. Mostly I just wanted people to see through my eyes for a minute. If you couldn’t help us, at least you could see the kinds of things the chronically ill go through, and maybe consider helping the next chronically ill person you meet. Make the world a little easier for someone else. Because I spend a lot of my time pondering how I can help the next person I meet and I’d like to think that if I can’t help them myself maybe I can help someone else decide to help them. Thanks for reading this long, rambly post. Love you, humans.