Understanding Support: What Does It Really Mean?

Life, parenting, and adulting is hard. Doing it with Multiple Sclerosis is even harder.

Let me start by saying I appreciate any and all support from friends, family, and others. I truly do thank you.

When friends and family join the spring National MS Society walk, donning their Team Super G attire and waving orange flags, I feel valued and seen. Likewise, it's gratifying when someone comments "You're an inspiration" on my MS Facebook post.

For most of the years following my MS diagnosis, I felt supported and understood. However, it was only after my son was born and in the years since, as I've been rediscovering myself, that I started to realize and understand that support means something entirely different to me than I previously believed.

What does it really mean?

So, how is it different than people showing up and speaking up, you ask? Simple- It's help. It's actual physical and mental support in areas of my life that are negatively impacted by MS.

It's actual physical and mental support in areas of my life that are negatively impacted by MS.

For example:

Childcare help to allow me time to rest or workout.

Working out and movement helps alleviate the pain in my hands, feet, and muscles caused by MS. That is a symptom I experience every day. Working out in the morning is far more realistic for me than attempting to after a long day at work when my symptoms have worsened. With a toddler at home, a full night's sleep isn't always guarenteed. When I am able to get up at 4:30am to go to the gym, I am so grateful for my husband's support and help with our son so that I can start my day with movement.

A friend coming to hang out with my son for an hour while I rest, is another great example of support.

Family or friends coming over to make dinner, or do the laundry, or watch my son for a bit.

Let me be clear- this is just a sometimes thing or during times when my husband is out of town for work--especially when he is out of town for work. I'm not asking anyone to be a fulltime caregiver here.

One of the worst things someone is when so many offer to help but then don't actively, assertively offer to help. Saying you can help and actually showing up or saying "This week on Wednesday, let me watch your son for an hour for you" are two very different things. Or when the "wish we could" or "wish this or that" phrases come up- that feels like a hard slap upside my face (if I'm just being honest) because- you can if you want. People with chronic illnesses have good days and bad and have varying symptom severity. So, you could base your loved one's support on their specific needs and challenges.

Just be careful what you say and how you say- you don't HAVE to offer to help, so only do it if you mean it.

what does support look like for you?

I'm not the only person living with MS or another limiting or unique circumstance, so what does support look like for you? When you really think about what you need others to do to provide you with what you need just to live without worsening symptoms or scenarios- what is that? Is it a listening ear? Someone you can vent to without judgement, relating, or commentary? Is it someone to offer to watch your kids while you grocery shop or just go be alone for a moment? How do you define support?

Maybe it is something really simple like- brace yourselves... this one is a big one- those closest to you just being nice. With MS being invisible I think those around me forget to listen and take me seriously when I say I'm not feeling well. Most of us with painful illnesses get really good at hiding it, so if I say I'm not well that means it must be really bad.

To the Supporters

Keep showing up and waving your flags. Share those awareness social media posts and make those positive comments. Those things really do mean the world. The biggest thing to remember is that someone living with an illness like MS has to do all the regular daily tasks of a "normal" person while battling unthinkable pain and discomfort. So, if you can offer to come over and wash the dishes, watch the kid for an hour, or sit and chit chat while helping fold laundry-those are the things that support us the most. Most importantly, thank you for being the supporter you are.t That you even care enough to try says so much.