You don't get it... till you GET IT.
You know how frustrating it is, when someone comes to you that does not have Multiple Sclerosis, or any other chronic illness, but tries to compare what he or she is going through to what we are going through. It’s annoying, at least for me. I know that I’ve touched base on this a few times in the past with, “You Can’t Compare”. However, I feel this is something that I need to touch base on again.
I've heard it all before
I wanted to write this article in more of a ‘scenario’ way, sort of like what someone says to you, and what I’m thinking in my head but try not to say out loud so that I’m not being ‘rude’.
- “Oh! I get muscle cramps all the time too! They are such a pain.”
- No, muscle cramps and dealing with spasticity caused by MS is NOT the same thing. There is no comparison. I wish it were just a muscle cramp that I had to deal with.
- “I can’t sleep either, it’s so annoying. I am running off of so much coffee right now!”
- Yes, not being able to sleep is very annoying. But the cause for the lack of sleep is most likely very different. I can’t go to sleep because of the pain that I’m in. And there is no way that coffee is going to help me the next day.
- “Oh girl! I don’t know where my head is at half the time either! I can’t remember a darn thing!”
- Yes, forgetting things is very annoying. But having to deal with cog-fog aka cognitive impairment is something completely different. This doesn’t just affect our memory, but many other things in our daily lives as well.
- “Girl! I hate bras too! They are the most annoying things ever!”
- True statement, they are pretty annoying. But when you wear one, it’s just that… it’s annoying. When I wear once it can bring on the MS Hug along with spasticity, where it feels like my insides are squeezing me in a bear hug.
- “I don’t have any energy to do anything today either! I just want to be lazy!”
- Having no energy for just one day out of so many, is not that bad in the grand scheme of things. But everyday having to deal with this chronic fatigue that is trying to keep you down when you don’t want to be ‘lazy’, you want to get out and do things. There is no comparison between being ‘tired’ and having ‘chronic fatigue’.
- “My legs fall asleep all the time and it’s soo annoying to try and walk after that because your leg feels heavy.”
- Yes, it is a horrible feeling for your legs to ‘fall asleep’, the numbness & tingling. But for those who do not suffer from a chronic illness like MS, the feeling comes back for most. I haven’t been able to feel the bottom of my feet and tops of my toes for I don’t remember how long. Also, that heavy feeling of the foot, it’s a constant for a lot of people with mobility issues due to MS. Not to mention the random spouts of numbing/tingling that comes on with no warning.
- “Oh man, I hate it when my vision changes too!”
- Yes, it is a common thing to happen to many people that are ‘healthy’, however, we usually experience drastic visual changes that can cause double vision, blind spots, dizziness & vertigo. I would love to only deal with ‘normal visual changes’.
These are just some of the recent things that have been said to me, when someone is trying to ‘relate’ to my MS symptoms. But the bottom line is, you don’t get it, till you get it. Meaning, you will not understand exactly what I’m going through unless you, yourself, getting diagnosed with MS as well. Which I’m hoping does not happen to the person making these comments either.
Some people just want to try to relate to us, and I can understand that, thank you. But there are others, those people that try and ‘one-up’ everyone else, that always have to have been there done that as well.
No one wants to deal with these symptoms, but we also don’t want what we’re going through to be categorized as something many others deal with on a daily basis that are ‘healthy’. Because there is no comparison… by making the comments like the ones above, you are making it out to seem like we are overreacting to our illness, when that is not the case. Most of us usually try and ‘hide’ what were going through from others, and just respond with “I’m fine”, when asked how we are doing.
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How do you feel before getting an MRI done?