I’d like some advice please from anyone who’s had any issues with their other half understanding this condition. My partner is lovely and very supportive but at times he just doesn’t get it. I don’t want to go into too much detail but I’d really appreciate some ideas. He says he’s read all the info on line but seems to be looking for a fix more than anything which is understandable. He also has looked at the side effects of my medication but still doesn’t seem to understand how odd I feel. It scares me that he’s losing his patience with this as it’s been about 4 years now, I’m probably just paranoid but I don’t know how to make him understand, if I try to explain he thinks I’m nagging him 
I hope he would read , or you can print and highlight… Ask him if he had a chronic health pain…if he would want you to learn…or try to understand
Here are some links
First one is for you
topical creams etc…that may help you
Lower meds
http://www.livingwithtn.org/forum/topics/taking-a-poll-here-please-instant-help-for-pain-now-topical
Here are two links about understanding
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
and
Get THEE Best book on TN
Striking Back By dr. Ken casey…
I think it has a chapter for families, friends
And lots of understanding the actual side effects and the disease
Hope this helps!
Hi,
Getting our partners to understand that this illness is hard to understand or relate to without actual having the condition by ones self can be tricky. The medications, treatments such surgery or injections, the feelings that go along with all this, and just the pain it’s self can be hard to wrap around your head for those suffering; watching and caring for those that do have this can be hard to grasp what it’s actually like to have. There are no quick fix to get your partner to understand what it is your actually going through. These may or may not work for you, but it’s certainly never hurts to try.
-
Talk to each over. Tell him how you’re feeling. If your having a good day or a bad day. How the weather is affecting you today. Use examples to compare things to him. For example some of my medications give a dizzy type feeling, and I feel off balance; I compare this to being drunk and sebady spinning me around a whole bunch then trying to walk. Use something that is some comparable and something that relates to him. It is really easy to isolate each other if you both do not talk with each other on how your illness is affecting you. Like wise find out how it is affecting them. Often our spouses feel helpless to help us, especially when a bad attack hits. Ask them how they are coping with everything. Just as important as it is to talk with each other about the illness or illnesses, make sure to talk about other things as well. If the only thing you talk to them about is TN this or that, well they might start to think your whining or nagging. Basically communication is very important.
-
Read everything that you can get your hands on. It sounds like he is all ready doing this. That is a great thing! Perhaps both of you could read material together, that way if he has a question he can ask you on it then. This may also come handy when going to doctor appointments. He can bring up questions and concerns for your health to your doctor/s that you may not thought of or did not know his concern for you.
-
Take your partner to a few of your appointments. This can be super helpful. This worked very well for my husband. When I was first being diagnosed I took my old man with me to the first couple of appointments I had with the neurologist. The great part was my doctor took the time to explain this illness and the affects of it to him. This helped him to see how serious TN is. Then at the one year marker it was not until then that he was beginning to understand how bad it was for me. Again the doctors were great at explaining everything to both of us, and he was able to ask questions to help him understand what it was like for me.
-
It may also help to see a consoler too. I know more than a few people were they were able to understand how an illness/es affected both partners in the relationship, and how an illness affects the one who was sick.
-
The spoon theory. Google for this and have him read this. It may help him understand what your going thru a tad bit more.
The largest factor I’ve seen is communication between both of you. My husband was fixated awhile back on “fixing” me or finding a cure for the tn. It got the point where he was driving me crazy with it. So finally after he asked about a procedure for the billion time I snapped at him and demanded why he was so zealous at curing me. What it turned out was; he just wanted his healthy wife back again, he was scared for me, felt helpless, and seeing my attacks of pain was painful to see. So anyhow, my suggestion to is to talk to him how he’s feeling on your illness. It might be he’s worried about something completely different than what you think. Not sure if any of this helps you at all but maybe somebody will have another idea or approach to this.
Thanks for the responses, I know he has read all the info and says he understands. I know it’s hard for him too as we used to be an active outgoing couple
I had actually suggested during the week that next time I go to an appointment he comes in with me, maybe I should have done this from the start. I think I thought it made me look less weak in the past if I did it on my own, but I can see know it would have helped him to be more included
I think the problem is he makes silly comments and then says he didn’t mean it like that, but it’s hard to take something back once it’s out there. An example was that I needed to get out more as staying in isn’t helping myself, if I’m going to be in pain all the time then it’s no different if I’m curled up on the couch or on a day out. I’ve had a really bad few weeks with a failed painful stellate injection and side effects (which I’ve already posted on my blog so won’t repeat here) from med, this just made me feel like crying to hear. I tried to explain to him I’m not curled up on the couch at times by choice, but not sure he understood
I should point out that when I’ve had physical procedures carried out he’s been fantastic and really looked after me. Plus the majority of the time when I’ve had bad flare ups he’s been great also. It’s those in between times when I’m up and about doing housework and managing the pain/meds which he doesn’t seem get, he seems to act like I’m fully healthy and that it’s all over
Just to update, things have been much better today, a big day out he’d planned tomorrow he’s now said we shouldn’t do if I don’t feel upto it, I feel so relieved as was reluctantly going ahead with it through guilt