Skip to Accessibility Tools Skip to Content Skip to Footer

MS, PTSD, and Us

Multiple Sclerosis is currently found in over one million Americans. Women are three times more likely to contract MS than men. And, unfortunately, the number of even currently married women who have MS is not readily findable, at least to me and my limited knowledge of search engines. I did find that 21% of MS based marriages end in divorce which is the approximate average for the general population.

Those veterans with Post Traumatic Stress Disorder affects approximately 31% of Vietnam veterans. 7% of Vietnam veterans suffer from both PTSD and Traumatic Brain injury and I could not find statistics on PTSD, TBI, onset of dementia and severe depression.

My spouse and I

All the above duly noted, Kathryn, my spouse, my closest friend, my wife, was early on diagnosed with relapsing remitting MS in 1994. This past year a doctor on staff at UCSF has diagnosed a change in her MS to primary progressive.

As a Vietnam combat veteran having served in country from 1968 through 1969, I was diagnosed with PTSD, TBI, onset of dementia, and severe depression in 2008 and ongoing.

Our story

Kathryn and I met with a series of very revealing letters during my time in Vietnam. Shortly after I returned from the war, we became engaged and were married in 1970 and have remained married for 48 years and continuing. Note her diagnosis was in 1994 and mine in 2008 and as of today, she is a retired teacher and I am a retired school administrator. Retired being the operative word. I am fortunate to be able to care for her on a daily basis. And, because of some “lucky” circumstances, we are able to weather the financial burdens of both our conditions. The potential for financial issues within our relationship is avoided.

Recipe for a toxic environment

The new for this lengthy prelude is to support the concept that Multiple Sclerosis and Post Traumatic Stress Disorder create an incredibly toxic environment in which we live. Let me hasten to add that Kathryn and I have always believed and acted as us against the world. That is our relationship yesterday, today, and tomorrow. So when I next focus on some main issues we have thus far weathered them all rather successfully.

Together time

Neither Kathryn nor I drive an automobile any longer but we have someone who now lives with us, along with her two young children, and who is a major support in driving us to a variety of places and on most vacations. However, I am a vet who cannot be around groups of people as my PTSD can rise to a dangerous level quickly, unexpectedly, and without control. As a result I spend a great deal of my time “alone in my backyard”. This issue is one of several common threads among all who have PTSD. Kathryn is basically non-ambulatory so she spends a large portion of her day in a chair. She needs and deserves companionship as do most married couples. This is very difficult for me as I sleep only about 2-4 hours a night so she frequently goes to bed before me and arises long after I have been up. This creates a problem for us in that she is constantly seeking more together time while I am pushing against that. We do both smoke (health risk we are aware of) but that does bring us together several times a day.

Memory problems

We both have memory problems. Sometimes it is as light hearted as neither of us can remember what we are doing even when we are together. Sometimes it creates tension in I cannot remember that Kathryn needed me to perform a certain task and I forget, seemingly to set up an “I don’t care” moment. She sometimes has to be reminded several times of a doctor or dentist appointment and I have to remind her several times a day which creates a frustration for me which can easily lead to anger.

Things she used to be able to do

Since Kathryn suffers from fatigue as well as a severe weakness on her right side. And, while we have a once a week house cleaner I perform cooking, dishes, helping with dressing each day as well as showers, retrieving items for her several times a day, and helping Kathryn get dressed for bed as well as get into bed. I count this as together time but she does not, at least in terms of quality time together. I can also become depressed and frustrated with what seems to me to be work overload. She becomes frustrated and sorrowful because she knows these are all routine things that she used to be able to do, but no longer can. I also find this debilitating because we both have our own ways of doing things and they regularly collide.

Familiar routines turned tense

Another of our seemingly routines was attending church every Sunday. Kathryn still does but I no longer can and this creates friction because a history of being together at church no longer exists. A familiar routine that now creates tension. This may seem to be a small piece of our lives that many may see as trivial but to us was a critical piece of our relationship. We have always been aware of the Lord acting in our marriage. We have always invited Christ to sit with us in whatever we did. There are many reasons for my new intransigence but these are all rooted in PTSD.

I cannot fix the problem

Several times a year I fall into a depression that takes days (and often a call to my psychiatrist) to shake it. I become short and unruly with everyone I come in contact with, but especially Kathryn. Every little thing becomes a point of contention. I am often an argument looking for a place to happen and Kathryn will inadvertently become that place. On the flip side, Kathryn becomes depressed and will cry easily. For me, crying is an opportunity to make things better. I am a fixer. Much of the time I end up frustrated and angry, at me, because I cannot fix the problem. I want desperately for things to be better even though there really is no fix.

More complicated than a Kabuki dance

Can you imagine how all these issues affect our sex lives? Made even enormously more complicated by the most personal effects of Agent Orange. Kathryn and I were a pretty normal married couple when it came to sex. As a married couple we enjoyed all aspects of married life including this aspect. Today it is more complicated than a Kabuki dance. I usually retire at around 2 in the morning and rise around 5 am. Kathryn usually retires around 11 pm and rises between 7:30 and 8:30 in the morning. In addition to timing issues, there are certain things I cannot do, though I have tried every aid available. Feelings of inadequacy abound, for both of us.

48 years, going on a lifetime

In all of these issue over the last many years we love each and have remained faithful to each other over 48 years, going on a lifetime. We have never confused the diseases and syndromes with the person. We are surrounded by a small circle of strong, concerned, helpful friends. Kathryn is one of the strongest people I know. I recognized that the first time I sat with her through childbirth. She is not now nor has she ever been prone to giving up. I am a US Marine trained by Marines, gone to war with Marines and I am proud to say I have never left another warrior on the battlefield. Kathryn is the only thing that means more to me than all the Marines I know. Deep inside I know leaving is just not an option. When we argue, we argue in a positive way. No name calling, no long distance sniping, and we try to “get out” our feelings all at once and with little carryover. But we are also blessed in that we had many years of bonding, of creating a relationship that could withstand the now trials and tribulations we now face.

What I wish for married couples

What I wish for all the married couples that read this is for them to know they are not alone. That while our combinations of diseases is a daily challenge we meet that challenge with hard discussion, tears, humor, help from Christ. Oh, and holding hands.

I will end this the way I began. It has been, is today, and will be tomorrow the two of us together.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Donna Steigleder moderator
    5 months ago

    Thank you so much for sharing your story. I can relate with what you say so much. Though my husband and I have never served our country, the struggles you share as a couple dealing with multiple medical issues that often conflict strikes home. I’ve been Lynn’s caregiver since 2009 when his MS RMMS changed to SP and now he’s totally disabled. My own arthritis is such now that it’s a struggle to care for him on my own so I have hired someone to help me Monday through Friday and it’s been a lifesaver.

    Like you, Lynn and I take each day as it comes trying to meet it without too many expectations, trusting Christ to help us get through each day and trying to keep a sense of humor in dealing with all the obstacles along the way.

    Frankly you and Kathyrn sound like amazing people with great spirits who are managing their lives very well and making adapting well to the curve balls coming your way. Thank you for your service to our country and for your continued service to your family. Donna Steigleder MultipleSclerosis.net moderator

  • Spratt
    5 months ago

    Oh my goodness, this article spoke to me! My husband and I have been married for 47 years. He also was in-country Vietnam, but Air Force. He has had rheumatoid arthritis since about 1995 and is well controlled right now, but that’s not always been the case. When I was diagnosed with MS in 2013 I said to the doctor, “but I can’t have something like this; I’m the caregiver!” I understand being a “fixer”, although as a husband, I’m sure your need to fix things is at a much deeper level than mine.

    I am so sorry about the PTSD and can only imagine what you’ve endured. It sounds like you and your wife are very successful at overcoming so many obstacles.

    I read years ago about a wife who was the caregiver for her ill husband. She found that by hiring someone to do the nursing and hygiene tasks, her relationship with the husband became much better – he treated her as a wife instead of a nurse. Maybe that could work for you?

    My husband and I have found that laughter is so important and we laugh mostly at ourselves. Honestly our difficulties seem funny to us. (Like when we walk, he gives me his arm. Folks think we are a cute old couple in love, when in reality we are just holding each other up!) I know that many people find that odd at this stage of the game – the MS is progressing, but we try hard to look at what I can do rather than what I can’t do and leave the rest to the Lord.

    I hope you and your precious wife can find many good, happy days ahead. You are in my prayers.

  • fremkiewicz author
    5 months ago

    Devin, I will read it. Anything in this area is much appreciated. The combination of the two is challenging for both of us.

  • Alina Ahsan moderator
    5 months ago

    Hi @fremkiewicz! I just wanted to follow up and share the article that Devin wrote about PTSD with you now that it has been published: https://multiplesclerosis.net/living-with-ms/ptsd/ Thank you so much for sharing your story about such an important topic. As you can see, you’re definitely not alone!
    -Alina, MultipleSclerosis.net Team Member

  • Devin Garlit moderator
    5 months ago

    Thanks for sharing this fremkiewicz! I actually just submitted an article about MS and PTSD a few weeks ago, it will hopefully be out soon!

  • Poll