What Your Partner Wants You to Know About Their MS
Dealing with a chronic illness like MS involves a wide range of emotions – from sadness to fear to anger to loneliness and so many more. And this is without the added stress of friends, family, a partner/spouse and possibly even co-workers who may think you’re exaggerating or using an MS diagnosis as an “excuse” to do less.
When I was first diagnosed at 22, I was in a relationship with someone who was selfish, had an addiction to alcohol and drugs, and was not supportive whatsoever. Luckily, I did not stay in that relationship very long!
My husband is stable, responsible and has an engineering degree. Those of you who love an engineer will attest – this is good and bad. The good is obvious – he’s here for me and isn’t going anywhere. The bad part is the black and white thinking and the urge to “fix” my issues with MS. Even telling me, “If I just exercised more…”
If only it were that simple, right? If only I had to do more of X or Y, I’d feel better…
This always makes me feel inferior and sometimes even a little angry, even though I know myself well enough to listen to my body and its very loud clues of when it’s time to stop.
Before I sat down to share my own thoughts, I checked around in some of the MS groups I’m in. I asked the question, “How many have a partner that thinks they don’t try hard enough?”
Out of over 300 comments, there was about a 60/40 split between people that had loving, supportive families versus people that were in a relationship and didn’t have an understanding spouse/partner. This included relationships that couldn’t weather the storm of having MS as a presence.
The comments from the ones who weren’t supported were heartbreaking. It sounds like a whole lot of people need to be educated on the ifs, whats, whens and hows of multiple sclerosis. There are far too many that don’t care or listen to their partners. Especially when it comes to fatigue and unexpected exacerbations. Which are all unexpected. And we are not imagining it.
Some partners are using the illness as an excuse to be abusive, adulterers and withhold/control finances.
Relationships are always a work in progress, no matter who it involves. When we feel like we need assistance or extra help, it’s human nature to find it difficult to ask for help fearing we will look weak or seem burdensome – myself included. Giving ourselves grace and having compassion for ourselves are the most important things we can do. It may come down to having that difficult conversation or taking stock of our life to make sure we’re on the same page with those around us.
I don’t think I’ve ever had a neurologist ask if I have support or help. This is just one of the gaps in care that I’ve noticed in the 35 years I’ve been dealing with the MonSter.
I wish I had a magic wand to help the millions of people that feel alone, sad and unsupported. I empower as many as energetically possible to have the tools to navigate this crazy illness.
But how do we change the current situation going forward?
Here are 3 things every partner should know:
- Understand there is a lot of uncertainty with MS. Some days are better than others.
- Treat your partner with the same respect and understanding as before the MS diagnosis.
- Find a sense of balance in your relationship. No one ever died from dirty dishes sitting on the counter or laundry piling up.
I am on a mission to bring global awareness to multiple sclerosis. The time has come to change the face of it.
I might have MS, but it doesn’t have me!
An activist in the U.K. discusses the challenges that the Black MS community faces here… Read More