I have learned from the process of being diagnosed with MS and being married that communication is key.
Four years ago, I sobbed when the doctor called me with my MRI results and a recommendation to see a Neurologist. “The lesions could be from migraines, but it might be MS”. I knew something was wrong with me, I was just hoping I was wrong.
My husband came with me to the first appointment and it was like we were hearing different things. He was hopeful, there were medications, this was good. I was hearing, “this will kill you, it’s just a matter of how fast and how painful”. It was quite some time before I felt like he really accepted this was a disease of degeneration. I would not stay where I was at the time of diagnosis forever, and most likely, I would not get any better.
Here’s the thing though, I was reading and researching and not sharing feelings or thoughts because I didn’t want to scare my husband, my partner. I had read so many blogs that said a MS diagnosis is the beginning of the end for so many marriages. I didn’t want that, I did not want to lose my partner and I did not want to show weakness to the world.
Much like my decision to start this blog, sharing my feelings about my diagnosis was hard and I wasn’t sure if I was ready. I was finally convinced that sharing is better than not, my marriage would grow stronger with honesty and communication. Other people with MS may benefit from my experiences during my path. So I lay myself bare (figuratively) for all the world and hope it doesn’t cause me too much pain.
We were accepted to a Couples Workshop for MS couples about 2 years ago. We thought if nothing else, it would be a safe place for us to talk with other couples dealing with this drastic change. We learned a lot, we learned communication is so very important. Listening and spending time together outside of M.S. and our kids. Connecting to who we are as a couple now.
I have been in therapy since that workshop, working on myself, my trauma, my life as this person that is not who I used to be. I think that is the most important first step; how are you going to be able to build your relationship with your partner if you can’t deal with your own stuff? My husband came with me to therapy a few weeks ago because I feel like my MS is getting worse and it’s effecting my mood. He said to my therapist, two years ago, she would have never had this conversation. He was right, I learned to bottle up my shit when I was little and hold it down like a wet dog trying to get out of a bath tub.
If you are the partner, hang in there, it’s so hard to go from being a person who has a view of what their life will look like and then get kicked down and told good luck figuring out your new life now. Pain changes people, not usually for the better..
If you have MS, believe in something, science, faith, your partner. It’s so hard to adjust to who you can be now from who you were before, at least it was and still is some days for me. Therapy helps, mine puts everything into perspective but also lets me complain when stuff gets really rough. Then she pulls me back and we figure out a plan of action. She helps me see things from my partner’s perspective because sometimes that’s really hard when I am wallowing in my sorrows.