After a year’s onset of various symptoms, I was diagnosed with FND July 2021. Thanks be to God that I live near a world renown hospital and have a cutting-edge neurologist who is a movement specialist
My husband is not responding well to this. He refuses to read any of the literature and doctor notes from my neurologist. I compiled a folder that simplifies my FND. He says I he knows enough; doesn’t need a bunch of medical jargon.
Sadly, our 39 year marriage is eroding. We met at 17 and quickly fell in love and became best friend all at once. Over the last year, we have become increasingly distant. I am reminded, quite frequently, that I have changed and am a different person than he is used to.
I am doing my best - every hour of every day. My world has been turned upside down! My goodness, I don’t know what my day will be like from hour to hour. I work very hard on trying to stay positive. I understand there is no cure for FND but remission is possible. Hubby doesn’t get it. He refers to when I’m cured. He feels I will go “back to normal”.
Hubby refuses to go to any kind of counseling. I want marriage counseling for the purposes of: improving communication and establishing reasonable expectations of each other.
If anyone has suggestions, I welcome them. I am becoming increasingly distraught. Thank you.
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HenriettaPoultryfoot
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Hi, I am so sorry you have that extra strain...especially when your marriage has been so solid. I have found with partner, family & friends that the need to "fix" me/ cure me is their focus. . Many believe that a trip to the doctor and all is well.. I have had support in the past but to be truthful I always had to work extra hard at being "normal"....which in itself didn't help me & caused me.more strain. I guess I would suggest writing your feelings down, (letter) adding how much you love him & don't want to lose what you have had, but asking for him to be with you through this because he loves you, and not because he understands it all. I think that is important... sometimes they don't know how to deal with our suffering & look for fixes instead. So maybe make it okay to agree he just backs you and loves you and that you are in your heart the sanlme woman. I think in a letter you can better say what you want & reassure him without emotions getting in the way & also say what you need from him (it might help). Maybe he doesn't need to understand everything we feel with the disease - maybe he just needs to know you have not gone, things are just different....maybe small steps like this could help & allow gentle conversation. I hope this helps.. I think in his heart he is just scared of losing his love..... Best wishes & I hope you know that I am just speaking from my own experience..not an expert!!!! But want you to know I support you....
Thank you, Resiliant, for your reply. A letter sounds like a good approach. I can take my time composing it. That way I can accomplish what you suggested. Support from others in the same boat is good stuff.
I've often resolved problems with a letter, sometimes what I want to say doesn't come out right, or I jump to conclusions. So maybe start with list of how you feel, that you don't like the new normal anymore than he does. I do hope all goes well. After all these years, it's worth fighting for. Take care. Moni
Thanks for your input. You have a good idea on how to organize a letter to hubby. I agree, this marriage is worth all the energy I can put forth. However, marriage is a 100%/100% effort and commitment.
Perhaps the letter will turn the key, and hubby will get on board. I am grateful for you.
Just a thought …. even if your husband at the moment isn’t keen to go to counselling. I would suggest you go anyway on your own…. If you click with the counsellor great… if not try another one.
I went for marriage counselling way before FND, he did come to a few after a while…. but also since FND affected my entire life.
I didn’t feel I needed pscychritric help when it was mentioned to me, during my neurologist appointments , I have mobility issues from my FND since 2014.
But the emotional and mental impact this has on your life, whatever your symptoms I feel can be immense at times.
Counselling has helped me so much to better understand other areas off my life, but also and I had a place to talk openly and honestly about this ‘new me’… …one I had no say about…. which in itself is incredibly frustrating!!
Really do hope the letter helps amd things can move forward for you.
Thank you so much for your reply and suggestions. I began to see a psychologist last June. It took about six weeks to get an initial appointment and then I was able to get on her weekly schedule. It has helped me a lot in coping with the FND. Just not with getting hubby on board. The Doc has helped me identify what I CAN CONTROL in terms of Communication, Expectations, and Coping Strategies.
It’s helpful to hear ideas from others who understand. I am grateful for this group.
My sympathies are with you. About 13 years ago, I had a medical condition (not FND), and my husband absolutely refused to look at any of the written materials I brought home for his perusal.
If your husband refuses to go to marriage counseling, the most helpful thing for you to do is to take care of your yourself the best you can. If you are not already in individual counseling, I would highly recommend it. It appears that you need some help dealing with your husband's obduracy. But you need to always keep in mind you cannot change him; the only person you can change is yourself.
Thank you for your kind words and concern. I have a therapist just for me. I agree that I can’t change my husband. It’s just sooo frustrating.
I am in my 60s and am the type that have always put others first. Times are changing!
In December 2021, I decided that I am going to focus more time and energy on my well being. I have scheduled a monthly massage and a facial every two months. Last Fall, I found a person at a local nail salon that I trust to take care of my hands, fingernails, as well as my feet and toes. Both the nail person and massage therapist are well aware of my neuropathy and are very careful with my numb feet and right hand.
I have a healthy diet with mostly homemade and non-processed foods. I cook on the better days and freeze dishes to have on rotten days. I exercise at the wellness program at PT.
This stuff is pretty much my life. Housework and organizing have taken it on the chin. But oh well, I am more important than a few little dust bunnies and streamlined book cases.
It would be nice to have my husband’s involvement. As you said, I can only change myself.
Yes, this is expensive. I view it as health related care. Since I don’t spend money on much except essentials such as groceries and home expenses, I can balance the cost kind-sorta.
I discovered my FND is hugely tied to my husband and went to solitary occupational therapy to help, cope understand Better my condition and how to deal with it or make changes to prevent further stress symptoms of FND, it came down to it that my husband did not want to know or care with what was involved with my FND and felt very alone. I came to realise through my therapist that I'd spent the last 10+years in D.V relationship/ marriage with my husband and realised something had to be done about it.
When I was under stress, or an argument/ fight with him the FND would flare up 10 fold and would affect me for days afterwards.
I really hope this alternative
Way of communicating with your husband and getting him to better listen/ understand what your going through and what the future may hold-works for you and your relationship with your husband and hopefully even brings you closer together!
I am open to all information, suggestions, and experiences others in the FND boat. I have been advocating nearly one year for hubby and me to seek professional counseling. He won’t budge.
I am still plugging along perusing every medical avenue possible. It would be comforting to have my husband on board. As to anything related to FND, I may as well be single with no children or siblings to help. I do have a couple friends that I have known for decades with compassionate ears to listen. Of course, they live hundreds of miles away.
I wish you well. We will see what the future holds.
As I am not a councillor or therapist, I can only advise as someone who has been through this, DV situation , young children and a partner who just doesn't seem want to understand or care, which then makes communication and life, a lot more difficult and stressful, I feel you should, like myself, put an ultimatum to him that he is part of the cause of your FND, ( maybe some emotional and psychological abuse?), and that if he cannot be there for you , support you or make the effort towards your marriage, then show him the door ( or while he is away or at work , pack his shit and leave it out the front waiting for him) or reach out to.someone who can let you stay with them until you sort things out for you to be in a better, more stable situation, maybe paperwork to find a place/ somewhere for you to stay, apply for financial support and DEFINITELY seek support through help and councilling, maybe referral from a Dr? That specialises in FND as some still struggle to get their heads around FND unless they have background in it. (Though for your safety do not imply that you will leave or kick him out- as this could cause things to escalate?)Depending on the response of your.partner- will show his true colours of how he really feels about the marriage and support for you, also be WEARY that it is easy.for them.to apologise and say yes, yes, yes, but action speaks louder that words, and make sure he doesn't fall back into a cycle of his old ways. There are organisations that help you.with all this if you find lacking in support.
Please don't be like.me and leave it till it's too late for your health and mental well being to. Do something about.it!
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