I didn’t always have it this good.
Both of my parents are highly educated nurses with over half a century of experience in the field between them. They work in nursing education at the present moment. You would expect empathy and understanding from parents that do it for a living, but growing up with nurses for parents usually yields the exact opposite.
As a child, unless I was turning blue or was bleeding profusely, it didn’t elicit any kind of alarm. I had to have a fever greater than 101 or be projectile vomiting to stay home from school. But on the other hand, I always had cool band-aids (they usually indulged me and used something from the hospital like butterfly sutures or tegaderm) and I practically grew up walking the halls at a major university medical center. By the time I was a teenager, I had met extremely well known and well accomplished transplant surgeons, observed some procedures, visited research facilities, and knew I was destined to follow in my parent’s footsteps.
Back to my issues. I have always had something medical going on with me. I developed severe migraines at puberty (I think I had some as a child, I remember having really bad headaches). I had a severe case of mono at 14. And that is what seemed to me to kick off the immune issues. While working in the ICU I contracted a hospital acquired infection. I was so sick. But it didn’t seem to faze my parents. Not that they weren’t empathetic, its more like their attitude was nonchalant.
And then I was diagnosed with fibromyalgia while I was battling the infection. I’m pretty sure my parents didn’t believe it was a real condition until recently. I heard tirades about laziness, needing to “put my big girl panties on and deal with it”, “pulling [myself] up by the boot straps”. I was so exhausted from the infection, my muscles ached, I was losing weight, my husband at the time was less than supportive. And my parents. who were nurses, thought I was faking.
I’m not sure if it is because there is literally no proof of illness, and the diagnosis is made by exclusion, but their attitude was less than comforting.
Fast forward to this illness.
I’m not sure if it is because it is something that is provable with pictures and blood results, but my parents are much more empathetic this time around.
Because I need to go to the eye doctor so much and require a driver, both of my parents (and my husband) have been to the doctor’s appointments with me. They hear the prognosis, see the imaging and can ask their questions about my treatment. I even make sure they come to the appointments that I could drive myself to, mainly so I don’t forget anything.
My parents call and check on me every day, they have been helpful financially and in caring for my daughter. Occasionally I’ll hear a comment about “pushing through the fatigue/pain”. They joke about my husband leaving me (which I hate). But overall I feel like I have the support of my parents, which I feel I did not get during my first battle with severe illness.
I feel like I have the support of my aunts, uncles and cousins, which I most definitely did not have in pgh. That is a story for another day.
And my husband. We have some issues, but I let him read this blog yesterday, and he seems to understand more. I write about this better than I can express it verbally. He thanked me for letting him in to what it is like.
Unless someone goes through something like a chronic illness, in which they are experiencing symptoms every single day for a prolonged period of time, they honestly can’t understand it. It is truly mindboggling. The planning, the explaining, the fear (of the unexpected), the doctor’s appointments, the medications, and around and around it goes.
I am truly grateful to have the support and love of my family this time around. It may have taken awhile, but I would rather have it now then not at all.