There’s a lot being said about Lyme. There’s a lot that isn’t being said about Lyme. No matter how many people attempt to comment on Lyme disease, you just don’t get it until you get it.
Here’s a list of things only Lymies would understand:
1. You can’t just push through it
Assuming people have the best of intentions when they try to motivate you to keep going, it’s hard to tell them that sometimes you just can’t. It isn’t for lack of effort—that’s for sure.
2. Just getting up in the morning takes all of your energy
Then there’s showering, getting dressed, eating breakfast…and you still have the rest of your day. Anyone with chronic illness has heard of the spoons analogy. Essentially, each spoon represents the amount of energy you have to complete one task in your day. You’re only allotted so many spoons when you have chronic illness, unlike the rest of the healthy population who can go about their tasks without thinking about the consequences. Read more about the spoon theory here.
3. You start correcting people that it’s Lyme not Lymes disease
Some people may think it is just a name. Those living with Lyme understand that with all the misconception there is around the disease, it is important to not get the name wrong if we want people to take us seriously.The reason we know it is Lyme and not Lymes is because Lyme was discovered in the 1970s in a town called Lyme, Connecticut, not Lymes, Connecticut. Because it was named after the town and not the person who discovered it (Willy Burgdorfer), it differs from a disease that is pluralized such as Parkinson’s.
4. You inform everyone about how to check for ticks, especially after hiking
You know it’s a misconception that you can’t have Lyme if you don’t remember being bitten by a tick.
5. You understand that antibiotics don’t work for everyone
After a few weeks of antibiotics, many doctors will say you’re cured of your Lyme. That may be the case for some people, but many Lymies are left with persistent symptoms, coinfections and flare-ups. This leaves you to find your own course of treatment.
6. You’ve tried everything you can think of
And don’t even get us started on how many thousands of dollars you’ve spent in the process.
7. You constantly have to convince people that Chronic Lyme is real
Even if people do believe in Chronic Lyme, they doubt that you could be one of the unlucky ones to get it. Hence, you feel the need to always defend yourself as to prove you aren’t faking — maybe you’re just lazy?
8. That it’s your fault you have what you have
You’ll hear things like:“Did you take antibiotics when you were first diagnosed?”“Are you eating a healthy diet? Maybe that’s why your symptoms are so bad.”
9. You’re lonely but you don’t have the energy to socialize
Sometimes it isn’t the act of socializing…it’s the act of doing anything. Certain times of the day are worse, too, and it always seems to be the times when everyone else is wanting to do something. You can’t control it or plan for it, and people eventually just give up trying to make plans for you since you’re always having to ditch out.
10. You are consistently given advice on what treatment plan you should try
Just because your aunt’s neighbor’s son had success with something doesn’t mean it will work—assuming it hasn’t already been tried.
11. The pain doesn’t ever really go away
Sure, there are good days and supplements, but there’s always a constant, dulling pain. And flare-ups.
12. You feel like a failure every day
The guilt of not being a good enough spouse or friend or co-worker is something you feel everyday.
13. You miss who you used to be
Things were so much simpler before you got Lyme and you would do anything to be healthy again.
It can be tough to be a Lymie and sometimes the only people who understand are the ones who are dealing with it, too. Share this article to show your support for the Lyme community and to spread awareness.