It’s World MS Day!
The day was started back in 2009 by the MSIF – the MS International Foundation to raise awareness about MS.
Wait, what is MS again?
MS is a neurologic disorder where the myelin, which protects the nerves, starts disappearing in the brain and spinal cord. Scientists don’t have a cause yet, but this is an autoimmune disease. Essentially, the Immune System is destroying the myelin – AKA a large part of the Central Nervous System (CNS). T cells, the badasses of the Immune System, help carry out the friendly fire.
There are four kinds of MS. I know that I can’t do them justice, though, so I suggest visiting the National MS Society’s page on this for more info. The damage done by the disease can only exist for the duration of a flare-up or relapse. It can also improve a bit when that period is over or become permanent. Some of that depends on the type or the severity of the damage, and some of it seems to be unexplainable.
MS symptoms include fatigue, numbness/tingling, weakness, vision issues, spasticity, dizziness, bladder and bowel problems, pain, speech and swallowing problems, tremors, and more. The diagnosis process is tricky because of how many diseases can share these symptoms and the lack of a defined singular test.
Like in so many conditions, diagnosing MS means taking into account a patient’s history, their familial history, conducting a physical exam, and labs to check for other issues. A B12 deficiency, for example, can mock a lot of these symptoms. Then, of course, there are the bigger tests – MRI, Evoked Potentials, and checking spinal fluid through a spinal tap.
That said, around 5% of people don’t show their MS on MRIs.
Cue my inner screaming at the fact that we don’t know what’s currently going on with me but my MRI looked ‘normal.’
2.3 million people around the world deal with MS that was, more often than not, diagnosed in their later 20’s/early 30’s. It is more common in women, unfortunately.
There is also a genetic factor.
A Chronic Sex Connection
I have a personal connection to MS in that my great grandma Katie dealt with it. We watched her go from using a scooter rarely to relying on it and being unable to go out. I baked with her when I was little and she’d put me on the countertops to reach the cabinets. That is until she got a grabber and I got too big.
In the 70’s and 80’s, there just wasn’t enough information about MS. Doctors didn’t know what to look for and didn’t have the right equipment anyway. They gave Katie the runaround and told her those stereotypical things women are told about illnesses doctors aren’t educated enough on.
More education and better technology came in the 90’s. Still, it doesn’t do much without better medications which only recently came about. Katie passed away in 1999 as a result of complications from her disease.
What about MS now, though?
Thankfully, there are a variety of treatments for MS now that make it a lot easier to live well. More awareness about MS has been coming about lately, too, because of the willingness of celebrity patients – like Teri Garr, Jamie-Lynn Sigler, Jack Osbourne, and Montel Williams – to speak up.
Jamie-Lynn has actually opened up about how MS affects her sex life and relationship:
First and foremost, [sex] is the last thing on your mind at the end of the day. That’s not where your head’s at. It’s a part of you that you can forget that is still really important. Sometimes pushing yourself to have sex can be like, “Oh yeah, I do enjoy this! I do enjoy this part of me!” You’re laying down, you can definitely make it work for yourself. And then there’s physical things that affect everyone. For me, because I have bladder issues, I have to make sure I always…like, spontaneity is out the window, so I have to make sure I go to the bathroom before. So there’s certain ways I have to manage it and be responsible with it. But you don’t want to lose feeling sexy, and I can feel that sometimes, where I’ll say, “I don’t feel sexy. I don’t feel good today.” Like, I feel dumpy. My husband is wonderful and great at making me feel good about myself—or trying to at least! But, like I said, there’s times I’m like, “I’m going to do this for him,” and then realize it’s actually for me too.
Jamie-Lynn touched upon a lot of issues with sex and intimacy. Fatigue, pain, and body image issues are big ones for sure.
Physical issues with sex are often overlooked for MS patients. That said, this is actually a population that is getting studies around sex done! Vaginal dryness and difficulty orgasming are two big things for vagina-havers. Orgasms and erections become tough for penis-havers as well.
Changes in someone’s sex drive can affect their relationships, too. That’s part of why communicating with your partner(s) is an important part of any sex life, but especially one with illness/disability involved.