MS & Things People SHOULD Say

So as you may know, I wrote an article a while back titled, MS & Things People Should NOT Say, so I thought I would try and write something in relation to this, so that those people who actually really care, can have some ideas on how to approach someone living with MS, or any invisible/chronic illness.

These are some of the things that my family and close friends have learned to ask me about or tell me, that encourages me to open up about how I’m doing, and really get me interested in the conversation at hand and not ‘masking’ my REAL feelings.

I don’t know about everyone else, but when I have someone ask me how I’m doing… and I’m not sure if they really want the truth to that question… I respond with, “I’m Fine.” That’s usually the most common phrase I use when asked how I’m doing by someone when I don’t know if they asked out of courtesy, or if they genuinely want to know.

So for those people who GENUINELY want to know how someone with Multiple Sclerosis is feeling, doing, etc. Or just wanting the person diagnosed to open up, here are a few things that I have had said to be in the past:

  • When you ask, “How Are You?” … and I respond with, “I’m Fine.” You don’t have to leave it at that, if you know that the answer isn’t true. So you could say… “Okay, now how are you REALLY feeling?”
    • When I was first asked this, the statement made me pause for a little bit, because no one had ever really pushed past my “I’m Fine” barrier.
  • If the person with MS is feeling down in the dumps, or just is acting like they are “in a fog”… just simple statements can make a difference. Examples…
    • You are so strong!
    • You inspire me so much with your drive.
    • You are a true fighter.
    • This disease doesn’t define you; it has just brought your inner strength to the surface.
  • As we all know, people with MS, or any chronic illness go to numerous amounts of appointments through the year, or even multiple appointments in one month. If you know they are attending an appointment, or just had an appointment, ask them about it without the ‘patient’ having to bring it into conversation. Examples:
    • How did your last appointment go?
    • Is there anything new going on with your MS?
    • What all did you discuss at the appointment?
  • There are so many different scenarios that simple kindness and genuine interest can really make our day. That saying, “A little goes a long way,” is completely true in this situation. I don’t think so many of us living with MS would be so closed off if there was more positive interaction in our lives, outside of our support group, caregiver, etc.
  • I know that sometimes, people who care about us want to bring something to our attention that they read about, heard about… whatever. At times, this needs to be approached carefully. As you might have read in my MS & Things People Should NOT Say article… certain phrases can come out the wrong way. So instead of saying, “You should do _________”, “You should try _________”, “You shouldn’t do ________”. Instead, there are simple ways things can be said to come off with only positive intent. Examples:
    • Have you read this article about MS? I just saw it and thought of you and wanted to see if you had been informed about it.
    • Have you changed anything in your daily routine to help manage your MS or MS symptoms?

Just little statements, like the above, can give you a completely different response from the person living with MS.

  • Make the effort! I know, you are if you are reading this, but there are many different ways you can SHOW your effort very easily. So how would you do that? Lets see…
    • Stay up-to-date on Multiple Sclerosis and it’s research. This can give you a very positive conversation with someone with MS. Why? Because as patients, it’s up to us to make sure that we are receiving the best care that we possibly can. With no cure for MS at this time, we really like to be knowledgeable about what’s going on in the World of MS.
      • I actually attend Large Multiple Sclerosis Conferences on behalf of MSWorld, along with Dr. Daniel Kantor. We interview neurologists from around the globe about what’s going on with MS. Check the coverage out by clicking here.
    • Know the basics about MS as well as the medications… especially the medication that the person with MS you are trying to communicate with is taking at that time. This isn’t just the Disease-Modifying-Therapies, this is all treatments for MS as a whole.
  • Another important thing… Actions speak louder than words. Just being there for us anytime we need you, not “flakey”.
  • Don’t ask questions unless you genuinely want the truth. Because if we answer honestly, that it is us opening up to you. Make sure you listen to our response.
  • There are A LOT of Multiple Sclerosis Events going on worldwide. Some are teleconference, webcast… and LOCAL. Now, we know that you can’t do EVERYTHING for us… but here and there, if you hear about an event coming up… share it with the person who has MS.
  • Hard to really ‘believe’ that we are going through so many things at once, just because of an MS diagnoses… Then you need to read one of my other articles, Can’t Make This Up. If you want the blunt, to the point, truth about how a lot of us feel, then check out not just my articles but also every bloggers articles. We are all different (Snowflake), so we all have different feelings, emotions and ways of living with this disease. See that search tool on the top right of this website… USE IT!

I could probably go on and on for a LONG time… but I’m going to leave it at that… for now, at least.

Want to know a trick that not only I do, but also my family members and close friends have done? Set up Google Alerts for Multiple Sclerosis. This way, you will get an e-mail update of anything new and exciting going on with Multiple Sclerosis; and anything that’s being published about Multiple Sclerosis online. You can also sign up for e-newsletters from the multiple MS Organizations that are out there. Follow MS Organizations on Social Media… there are so many easy steps that can be taken to stay up-to-date about Multiple Sclerosis. This is not just a tip for our loved ones, but for people with MS as well.

YOU are your BEST advocate.

I know that this article isn’t directed towards living with MS – but I think that those that surround us should really have an insight about what we go through as well. I may be the one diagnosed with Multiple Sclerosis, but my family ‘live’ with Multiple Sclerosis as well. It’s not easy… at times, it’s downright miserable. But it’s up to each individual affected to do the best that they can.

I’m done for now… Until next time!

xoxo

Ashley Ringstaff

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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