Married to an MS patient

My wife was diagnosed with MS in Mar 2013. What started as some minor back pain, which we thought was just a strain, evolved into pain that moved across her lower back, around her hips, and became numbness down her leg. After a week in the hospital, and a full battery of tests (blood work, MRIs, CT scans, spinal fluid tests, etc.), the doctors eliminated other potential diagnoses, and were comfortable concluding it was MS.

That experience was my initial exposure to MS, and the ‘learning curve’ has been steep for both of us and our family ever since. After a few months of additional tests, screenings, and preliminary appointments with a neurologist who specializes in MS, the neurologist confirmed the MS diagnosis.

My wife then discussed medications with the neurologist, and after she chose one, she had to see some specialists based on the potential side effects of her chosen medication. Fortunately, everything ‘checked out’ with the specialists, and my wife was able to start taking the medication. She has had to adjust to the medication (she takes it now before bed because of how it makes her feel), but it pales in comparison to adjusting to her MS symptoms.

It is tough for me to hear her say (paraphrased), “I feel like I have the body of an elderly woman, for every day I wake up wondering what part(s) of my body will bother me today.” I know it is a lot tougher for her to constantly deal with at least some symptoms every day, but sometimes I lose sight of that reality. She tries very hard to not let the MS affect her, but I know she struggles with those times when she has to ‘give in’ to the disease, and take a much needed break.

I have found myself talking to many people who know as little about MS as I did before my wife was diagnosed with it. I share with them some of the best ‘sound bites’ I know about MS in general, and my wife’s MS in particular: MS is a ‘fingerprint disease’ – it is different for everyone who has it; once you know one person with MS, you know one person with MS; it is believed MS is a disease in which the body’s immune system attacks the nervous system, and destroys the myelin that protects nerves (just like the outer casing on wires protects the wires inside) – symptoms vary depending on which nerves are exposed when the myelin is destroyed; asking whether my wife is having a good day is fine, but often a better question is whether she is having a good morning/afternoon/evening/night; MS drugs do not cure MS, but they do help minimize the severity of her symptoms when she has a ‘flare-up,’ decrease the length of her ‘flare-ups,’ and increase the time between ‘flare-ups’ – my wife takes other drugs/treatments for her symptoms; MS is a challenging disease, with a lot known about what it does, but little definitively known about why it does what it does to those who happen to get it.

The reality is that our lives are forever altered by my wife’s MS. However, while MS requires us to constantly adjust to it, we are still in control of our lives, and we choose how we will deal with the disease. There is great comfort and power in knowing we have control and choices.

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Comments

View Comments (4)
  • Cindi
    5 years ago

    I went years without a diagnosis. Even with my father having it so we suspected that is what mine was. Was married to a man that never went to ANY of my doctor appts. Not even my MRIs or my spinal tap. Yet he called me all the nasty names. Lazy was the nice one. After the diagnosis was made my marriage lasted a year. I just couldn’t take anymore! To this day he tells out children that I don’t have M.S. “because she isn’t in a wheelchair”! 20 yrs of marriage thrown away by him because he couldn’t handle it.

    I have been married to an awesome man for 10 yrs. He even watches out for me so that I don’t over do!

    I guess what I want to say is if you find you can’t handle it, tell her! Even if you love her you will destroy her if you stay and take it out on her.

    It takes a real love to deal with it. I wish you both the best.

  • Tammy
    5 years ago

    I was diagnosed not even a year into my marriage, I was 23 we had 4 kids between us ages ranging 6 4 3 & 2 !!! We was scared to death ,none of my Family had even heard what MS was, let alone that there was “No Cure” for it !!! We had just moved in a new house, My job was half of our income. from July to Dec that yr I went from a woman who picked up 50 lb pkgs , building pallets and loading them in trucks to a woman who couldn’t walk, tremors in arm, double vision and numbness on whole left side and from the waist down on other side !!! Our world fell apart , we lost our new house and had to start renting again !!! The only thing we had left was my nice Mini van !!! I was determined that the MS wasn’t going to take it, it already took everything else !!! Well come to find out that nice Mini Van was my Down Payment a yr later for My new house and my symptoms got better through rehab and meds, maybe not like I was before being diagnosed but I was walking again , my arm still shakes but not as bad as it did , if fatigued my eyes go Double or Blurry never got my feeling back in my body !!! But the point I am trying to make is …. We may have lost alot since that day of diagnoses but We have also regained alot of it back !! It takes WILL POWER , LOVE , PATIENCE and ALOT of PRAYER to get through it everyday !!! That was 22 yrs ago , another baby later that wasn’t suppose to happen and I have the Best Husband to take care of me and who puts up with me because I’m not the easiest person to live with but Keep Fighting the Fight don’t give in to the Monster !!! Live …. Love…. and Laugh or Love…. Live… Laugh !!! I’m choosing to keep loving., living and laughing !!! Good Luck and God Bless to all

  • Mandyrose
    5 years ago

    You have painted a pretty accurate picture of our lives with MS. You should know a few more things about how you can help your wife. You are 100% correct in saying MS is like a fingerprint. We are all different. Being married to a woman with MS takes going the “extra mile”. Women need compliments, attention and a feeling that you are a team. It’s hard to join the MS Team, but worth it. I was 46 yrs old when I got my diagnosis, but I believe my mystery symptoms went back five to ten yrs. My husband and I had known each other for years before we married. We tried to hold on for ten yrs. He wanted out of the life with MS. I am glad he was honest with me. I was very hurt, but I didn’t have to pretend any more. Make sure you have what it takes to go that extra mile. Get help, get out and socialize and be present with your wife. She’ll know if you’re unhappy, I did.

  • BonnyB
    5 years ago

    I wasdiagnosed on our 13th wedding anniversary 12/20/2004. He supposedly loved me ‘in sicknesss and health’ I returned from vacation on 10/4 of this year ( visiting family) and he had moved out while I was gone. He insists that if it had ‘just been the MS’ he could have dealt with that. Yet he refused to go to counseling with me. what he doesn’t understand is that almost all of the issues he names, at least were in response to something caused by the MS. I still believe that if he would agree to counseling, our marriage could survive. When I was diagnosed,he was dealing with his own health issues and trying to file a malpractice case. This disease steals your life as you knew it, and it is almost impossible to explain the nuances of symptoms and how they affect your personality.

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