“Hope you feel better soon...” the reality of chronic illness

I was in the emergency room a few weeks ago, with what we now know is a Hemiplegic Migraine (a rare serious form of migraine that causes weakness, numbness, or temporary paralysis of one side of the body) they originally thought I was having a stroke... 

When I went back to school, and explained to the people who asked, and who have asked repeatedly about all my other odd medical experiences, and they seemed stunned, shocked in a way. And said in a mumble whisper “I hope you feel better soon.”    

Of course one would expect that to be said if someone had a bad fall or a cold or was in some kind of accident, it gets said to people with chronic illness all the time. But the problem is that; for people with chronic or relapsing conditions...they won’t “feel better soon” they might have good days and bad days, but for many they’ll never be back to the way they were before their illness. 

I’m a bit of a unique case, as I have quite literally never been healthy, in utero I had inter-uterine growth restriction/retardation, and had my umbilical cord wrapped loosely around my neck, on top of that I was born at 27 weeks and spent the first four months of my life in the NICU, suffering a grade 2 IVH and resulting brain damage to the white matter. At 13 I caught a virus that destroyed my nervous system, and am still feeling the effects of it, on top of new illnesses and disorders. I have never been completely healthy, and never will be. I’ve come to accept that fact over time, there will always be some things I cannot and will not be able to do, or taste, or smell. So when people tell me that they “Hope I feel better soon.” A part of me feels hurt. It understands they mean well, as you can’t tell everything about a person by just looking at them. Yes they can see my glasses, my hearing aids, the way my arms and back spasm without my control, but on the surface I do not look as sick as I am on the inside. But that part of me realizes also that while I may temporarily feel better, have a good day, a good week, a good month or a good year (this years been arguably the worst on record!) I’ll never “feel better” in the way they mean. 

There’s no going back to whatever normal was, all we can do now is keep moving forwards. 

What are your thoughts when someone says that? (If you have chronic illness or not) What would you rather have them say? Or how do you think we should go about changing the idea that all of a sudden people can “go back to normal” when normal is different for everyone? Please let me know below I always enjoy hearing your thoughts!

Until next time,

Max

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