You Can’t Handle the Truth
Let me start off by saying, no, I’m not talking about MS patients when it comes to handling the truth… because I feel that we have a right to know everything that is going on with our MS case and what can be done about it.
What I’m talking about when I say, “You can’t handle the truth” is about the people who ask that question, “How are you doing/feeling?”
Well – I’ve come to learn that saying “I’m fine” works real well when I know that someone is asking just because they feel it’s necessary to do so. But when it comes to those who actually ask us how we are and giving them an answer… I sometimes feel like they aren’t going to handle the truth entirely well.
Not to mention that when we have to explain, truthfully, how we are doing… we have to say how we are feeling out loud and that makes it ‘real’. You know that whole; say it out loud in order for it to be true, kind of concept.
Now when another person asks me this with MS that I am a friend with, I feel like I don’t even have to explain it in depth and they understand what I mean. I think that’s how I’ve handled this diagnosis so well so far, because I have that support system in place through MSWorld.
So why do I feel like those who care that aren’t diagnosed with MS can’t handle the truth, is because no one wants to hear that we’re getting worse, they want to hear that we’re doing better and that’s great. But in most cases, this isn’t a reality.
Multiple Sclerosis is a progressive disease… no matter what ‘stage’ we’re in… RRMS, SPMS, PPMS… it’s still progression. Different stages have a different level of progression and things like that but the bottom line is that MS is a progressive disease that, as of right now, has no way to GUARANTEE IN STOPPING the progression.
The people who ask us how we are doing are not the only ones who want to hear a positive reply… but those of us who have to live with MS on a daily basis want to be able to give a positive reply instead of a negative reply.
I think it’s very important that the word be spread for those with MS:
Actually, at MSWorld we started a new campaign called, “Breaking the Silence – Live Beyond MS”. For those of you who would like to join us in Breaking the Silence, as well as viewing the content already placed there, I highly recommend checking it out. You can click here to view the “Breaking the Silence” area… One of the submissions that is very touching, is Kathleen Wilson’s short film called, Blu Sky. Click here to check it out.
Our parents, our spouse, children, etc. don’t want us to go through the MS Struggle but, for me, I feel like my diagnosis has affected them so much already that I don’t want to continuously be a burden and only report bad news.
So for those people who feel like they CAN handle the truth, here are some truths for you when it comes to someone who is living with Multiple Sclerosis:
- I feel like I got run over by a semi, then it backed up and did it again.
- I can’t get out of bed today.
- I am overly tired and can do nothing to help the feeling, sleeping included.
- My MRI shows new activity.
- My Disease Modifying Therapy isn’t working.
- My MS is being classified as ‘aggressive’.
- With the path I’m on, assistive devices are in my future.
- I have no other options left to try and control my MS.
- On a scale of 1-10, how bad is my pain? Oh about a 20.
- They had to increase one of my medications, and the side effect is just making my fatigue even worse than it was.
- I can’t do simple chores around the house because my (insert symptom here: example: spasticity, weakness, balance) is so bad.
- My new medication to help control my MS… while I hope it works, the side effects are making me even more miserable than I already was.
- For the ladies: I can’t wear a bra at all because the pain is so bad.
- My cognitive function has been really bad lately… I can’t remember anything or even voice what I want to at times.
- Well, today I woke up and my right limb (arm or leg) is completely numb.
- Well, my whole right side is weak and I can’t complete simple tasks because of it.
- I feel like I’m on fire and the medication isn’t helping me at all.
- I might have a more progressive form of MS.
- I’m getting worse…
As I’ve said on previous blogs… this list could go on forever… but these are just some I’ve used that I can actually remember at the moment. I’m not trying to speak negatively to anyone of those close to someone with MS who genuinely wants to know how they are… but remember that sometimes we don’t even want to speak the words out loud… even if they are screaming at us in our head.
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