Treat Others as You Wish to Be Treated: An Open Letter to Our Spouses and Partners
My journey in life has allowed me to connect with and meet people from all over the world. For this, I am blessed. I’ve met many diagnosed with MS and other chronic illnesses. All of our experiences are different and we have varying levels of support.
A little while ago, I had a conversation with a fellow MS warrior regarding marriage and I was able to discern that the person was going through a difficult time with illness and adversity. I have read other accounts and heard similar stories of the difficulties that MS and chronic illness may pose to a marriage. This exchange, and the other accounts that I have been told or have read about, led me to write this week’s column.
This person described the spouse as critical, and saying verbal attacks and bitter diatribes were commonplace. I thought of other instances in which the supporting spouse’s behavior was seen as abusive, isolating, and/or insensitive. Spouses referred to chronically ill partners as lazy, and even implied they were hypochondriacs. I am saddened each time I hear of or read about a situation such as this. I know how important support is, especially from the person with whom you share a life. I believe it’s crucial to offer the level of support needed to assist a spouse in managing a life-altering disease.
It is important for spouses to be willing to learn about the disease, and be receptive and empathetic.. As someone who has always battled chronic illness, I know the physical changes disease brings to our bodies and the psychological aspect of illness can be devastating. Illness has a tumultuous effect on self-esteem at times.
During our conversation, I realized this person also was struggling with issues of self-esteem. I remember times that I, too, didn’t recognize myself. In this person, I saw remnants of me throughout various times in my life. The difference is my supportive, loving spouse, and the person today who — as a result — loves and embraces herself.
I want to speak to the spouses and partners of those with MS and chronic illness about the essential role you play.
*
To our spouses and partners:
Whether I have met your loved ones in person or virtually, I can say without hesitation that they are brave, resilient and beautiful. Please know that your words and actions matter. Speak life, confidence and perseverance into your spouse whenever possible. Illness attempts to purloin so much from us, and at times we wonder if we will recover. Your positive reinforcement helps us fight. It reminds us that we are loved and valued.
Harsh words, in contrast, can compromise us emotionally. They can make us question who we are, and may prompt us to inquire if we want to stay around for more of this. Unkind words shatter us mentally and further strain our wellness. Stress worsens our conditions. Remember, you took a vow and/or made a commitment to love one another — in sickness and in health, for better or for worse. Be assured that I don’t have the right or the desire to interfere in your marriage. I am too immersed in sustaining my own.
However, as a married woman with MS, it must be said that I often rely on the love, support and encouragement of my spouse to get through wearisome times. I rely on him to stand in the gap when I can’t show up.
I challenge you to consider the alternative, asking yourself, “What if the shoe was on the other foot?” What if you were the person who was ill? Would you be satisfied with the support, affection and standard of care you give to your spouse if it were you needing help and support? We are not privy to the details of the future. There may come a time when your spouse has to care for you.
I acknowledge that as a supporting spouse, MS and chronic illness also may be difficult for you to manage. Everyone responds differently to illness. Please seek help if you must. There is a plethora of literature on MS and many support groups for spouses, partners and families of those with MS. Some information from the National Multiple Sclerosis Society may be useful and a good place to start.
Live well and treat your spouse the way you wish to be treated. Love can heal wounds that medicine cannot.
Sincerely,
Teresa
***
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
jacklyn burse
I was diagnoised in 2011 and im not married but i feel as if my boyfriend is hateful at times. Im only 26 i have 2 beautiful daughters but my health sucks.since hes the only one who works i feel worthless im trying to get disability and help but he makes me feel awful.
Teresa Wright-Johnson
Dear Jacklyn,
Thanks for your response. I am sorry that you are going through this situation. Please know that you are worthy and you matter. Please reach out to the NMSS, your treatment staff and others for support if you need it. There are also online support groups. I wish you the best.
Stephen
Ditch him hen only people who feel your pain are worth staying with my wife was diagnosed in 2001 and i thought my life was going to be taken up with constant nursing but I soon realised that mental health is way more important than physical health I don’t know if it’s true but I think ms affects the brain Before the body the constant rejection and belief of self rejection way out ways the love you feel for people constantly I love my wife more than words can say but it’s so hard when you are made to feel like the enemy all the time any suggestions to make life better are taken wrong only she knows what ms is like even though I live with it everyday so don’t reject any offer of help stubborn as ms makes you cos you will just end up a lonely old person just because someone tries to help you in this utter shit time of your life doesn’t mean that they don’t love or care about you
jacquelynn ravenswillow
me and my husband just separated because I was diagnosed two weeks ago and he has done nothing but tell me that I'm making up the disorder to get attention he told my friends that I made the whole thing up, not sure how I entered into getting a neurologist and an MRI and my doctor to all be in on this cruel joke to him but it's just been the worst.I have felt that the strain and stress in our relationship lately have made me have the latest ms attack that they found on the MRI it's left me in bed broken hearted and broken body but I feel that having him around and his negativity is the stress that can make me even sicker.
I need to focus on me and my daughter and healing I don't have time for negativity or extra stress or someone who doesn't want to help me do common things like vacuum or do the dishes and call me lazy because I can't do them myself even though I really want them done. Having Ms isn't hard enough it's even worse when someone you thought that loved you abandons you.
Stephen
You are better off without him hen he would just make your ms worse Ms sufferers get worse when their brains are pushed to overload with this shit you need to put him to the back of your mind and focus on the good things in your life like your daughter and friends. Fk him it’s time to look after number one and the that’s you don’t worry about your daughter she was will never be a cause for concern for you she will understand you and how you feel
Hope you feel better soon
Stephen
Doug
My issue is the complete opposite. My wife is a disabled veteran with MS. I have fully supported her MS journey, and try to help in any way I can. I try to be sensitive, and do what I can to make life easier for her. Over the last couple of years, she appears to have personality changes. She will berate me, accuse me of doing things I am not doing, and accuse me of not loving her. She will yell at her service dog or our cats at the flip of the switch. Sometimes she is outright irrational. The smallest thing will set her off. Today, Christmas day, I gave her several customs made gifts, as well as a myriad of gifts to spoil her. (High dollar items, and things on her wish list) so as to ensure she had a great Christmas. When she realized I didn't get her a Christmas card, she went ballistic, accused me of not loving her and wanted a divorce. This is not the 1ST time she has done things like this. One day I am the best husband in the world, and in the next moment I am the devil. She accuses me of not loving her, (I do dearly) and jumps to completely irrational conclusions on a dime. (Like today, she jumped from a beautiful Xmas to divorce because I didn't get her an Xmas card.) One day she wanted me to get items for an ice cream sundae, when I arrived home and the grocery bag broke leaving her hot fudge jar broken, it was litteraly the end of the world for her. (And me). She will berate me, and intentionally say hurtful things to me out of the blue. I don't know what to do anymore. Nothing I do makes her happy, and everything has an alterior motive. I love my wife dearly, but I don't know how much more of these irrational and hateful mood swings and outburst i can take. I have asked her to take medication, and she refuses, I have talked about counseling and she refuses. I'm not sure how much longer I can live like this. I am miserable, always walking on eggshells. She complains that we are not intimate, and I explained to her that if she could just go 3 or 4 days without saying something hurtfull, I would probably be in "the mood", but it's like she can't help herself. I love my wife, I don't want a divorce, and I don't want her to be alone, but I am not sure how much more abuse i can take. She threatens divorce to hurt me and one of these days I am not going to fight it. Her brother has similar issues with her. I know it is the MS, which is why I soooo patient with her, but it is has worn thin, and has ruined our marriage. What do I do? I have years in my eyes because I don't want to lose her, but I can't do this anymore.
Mike
I had an aunt who had M.S. as a child so I was somewhat familiar.
I'm on wife number 3. By far the best .She was able to cure an alcoholic of 40 years with 4 words. She was is a Christian. She was in My eyes my angel. She showed a 50 year old what true Love was.
A
Doug I fully understand I'm giving a lil preface so be patient lol.
She was diagnosed 2014. Things were rocky but I wasn't a good guy previously to our getting together.I seen her once in the early 80 we went to the same high school in Alaska. And never spoke til 2012. I was at the end of a 26year marriage and she was in the end of a 5 year relationship we hooked up on Facebook fairy tale relationship all the way. We both ended our relationships and 6 months later we were married.
3 years into our marriage I caught her cheating on me. And I was ready to just hold on to the vows. And try and rekindle what we had on many sleepless nights of our dreams of what and wheres of our path of retiring and preparing to get old. I have this far clung to the vows and keeping my promises. Sickness and in health.
I
Have given My all 200percent from day 1 doing everything trying to appease My queen. All's I wanted was the truth and we could move on.She has an internet addiction to top it off. The lies starter rolling and now since 2017. Her disease has gotten worse. Being down right mean and hateful lieing about her activities. I had to break it down . I told her it's gotta stop all's I've asked is her to be truthful and all our fighting would stop. And it seems to have made it worse. She been in complete denial from jump telling me it's all in my head.She is incapable of pulling up her big girl panties and facing her music. She loves the cake and eating it to but me that would be mutiny. We broke a lil ground last night. But the disease is bad enough on its own let alone bringing in high school games to the table. I'm worn thin and I'm hanging from the last thread. I Love her but there is a point one must lookout for ones best intentions for self. Im all in but if she can't be then I must fold and leave the table.
I'm not happy our sex life is dead. And she is operational so to speak and I do understand the day is coming. She wants for nothing I have no expectations from her. I have never worked so hard to love someone. Literally. So God help us. My self worth and happiness are starting to really popping into my head. Hang in there bud. Thanks for listening everyone.
.
PeteKenny
Doug,
You described my wife in every detai! I feel like I wrote every word of your comment. I have felt everything you stated. It’s a joylessness existence for both.. You are not alone. I wish us both the best
Wendy Grante
Doug, I am so sorry for your struggles/troubles and commend you for your continued commitment to your marriage/wife. But, you must also commit to your own health and wellbeing for everyone in your life.
I have MS and it is difficult and frustrating. However, MS does not give me “a pass” to be rude, insensitive, and cruel to the people in my life. I often feel frustrated by my limitations and guilty about how many things that I am unable to do. And this puts a Huge burden on the people closest to me, in my life. I know that I can be insensitive at times, I miss a joke or something someone says to me because my mind is not 100% present. I do not admit this easily, I try to convince myself and everyone else that I’m fine. However, my ability to function, see, hear, and my thought process can be off at times and somewhat normal at other times. I know this is confusing to the people who care about and love me. It comes off to them like I don’t care about them or their feelings. And nothing could be further from the truth. I feel a great deal of guilt about of my disability and shortcomings.
MS can cause personality changes but, if this occurs the healthcare team that cares for the MS patient needs to know. This could be a sign of new or worsening lesions in the brain, especially the frontal lobe.
Now to your health; living with a spouse with a chronic, often painful, debilitating, progressive disease can be difficult and scary. You may feel alone and trapped. I strongly recommend you build a strong support system for yourself and you find a good mental health professional to help you navigate this difficult situation. You must care for yourself.
I wish you the best and hope your life improves. You deserve to be cared for.
Paula
I was diagnosed with MS in August of this year--the icing on the cake of what has been 2020. I viewed this a set back and we would work through this together. My husband was very supportive, but has taken on the role of 'caregiver' more than spouse. In my case, this has not been necessary but has erected an immovable barrier between us as he turns more and more to coworkers for emotional support. If I try to show him emotional support for what he has lost in my diagnosis, he pushes me away and denies there is a problem. In the meantime, he talks to his coworkers about his feelings. I am on LTD now, I driving again and can look after myself. I am not in need of a nurse or caregiver. I can walk without aid, I am diligent about exercising, diet, and meditation, and brain building games to keep myself as sharp as I can be after the relapse. But I am feeling lost and alone as my husband turns away from me and all support I offer to engage instead on a deeper level with people at work.
mike
Not every problem that couples have can be blamed on having MS.
It's important to deal with reality and not believe that everything is down to the MS diagnosis.
andrew
"I acknowledge that as a supporting spouse, MS and chronic illness also may be difficult for you to manage."
Do you really, though?
It's OK for us carers to want to leave. We are not professional nurses, and we may find a better life elsewhere. "I have MS" is not a card you can play at the drop of a hat to always get sympathy - "I care for someone with MS" can truly be far worse - and the worst part is that only other carers really know how harsh it can be - anyone else will immediately assume the person with MS always has it more difficult.
And that's just not the case. Our feelings are as valid as yours.
Renee
Andrew's comment really resonated with me. My husband was diagnosed with MS 11 years ago. His health has steadily declined since then. We both work full-time jobs, and my job is stressful and fast-paced. I'm also his caregiver, which leaves me exhausted and miserable. But nobody cares how I feel as the caregiver. While I don't have MS, as a partner and caregiver in this marriage, MS has taken a toll on my health, just from the stress alone, lack of sleep, and injuries and wear and tear on my back, shoulders and knees. I was always healthy and active and now I feel like I'm falling apart because of the toll caring for my husband is taking on my body. I'm now fighting high blood pressure and pre-diabetes. I know I need to be active, but by the time I work a 10-12 hr day and spend the rest of my time cooking, cleaning, managing the household, family business and taking care of all of my husband's daily needs, I have no time or energy left for me. I often wonder who would take care of me if I get sick. I have nobody. My career and life have suffered, too. We can't go anywhere or do anything fun anymore. I'm a fairly healthy person trapped in a disabled life. So, if I stay, I'm told to suck it up. That's what you signed up for. But if I leave, I'm a horrible person. Nobody asks or even cares how I'm doing. I think his family members feel relieved that I'm here and he doesn't have to be a burden on them. They have no idea what it takes to take care of him on a daily basis. He's 6'2" and 260lbs and I'm 5'2" and 140lbs. and he can't do much of anything for himself. No, I most certainly didn't sign up to be a full-time nursemaid, full-time breadwinner, and a wife and mother all at the same time. The vows say for better or worse, not bad or worse. So, have some empathy and appreciation for spouses and significant others who are caregivers. We are human and have feelings, too. We're making sacrifices just like you. We deserve to be heard and respected.
George
I'm approaching 60. I have two kids who still need my help with college and so fourth. I have a 92 year old mother who needs help. I am self employed and have clients who need me as well. I've been caring for my wheelchair bound wife for over 15 years. At what point am I allowed to say "I just can't do it anymore"? My own health is suffering. I've injured my back lifting her from her many falls. I don't get enough sleep. I live as a virtual slave to her. I've set it up so that at some point she can live at a nice nursing home that is affordable, but the difference between a nursing home and living at home is huge. But I don't think I can do it much longer. What's the answer?
Renee
My situation is similar to yours. I am destroying my health and body taking care of my disabled husband with MS. I came here looking for answers as well. I think this article is about 6 years old. How did things turn out, if you don't mind me asking?
Brenda
You must take of yourself too; I certainly understand how hard this is on you. If you can afford to have someone come into your home a few days a week to help out you might find some relief. You do need relief now and then and your children do need you; you should not be a slave to your wife. It’s not healthy for any of you!
Bn (ms patient, mother of college student, and daughter of aging father who needs help)