What do you do when everyone else around you starts to become numb or worn out by your disorder?

[boazk]

I was diagnosed with conversion disorder (or FND) just over 4 years ago. Although I haven’t had a seizure in almost a year, I still struggle a lot with my mental health issues and keeping myself from having episodes. Many people in my life become accustomed to the fact that I deal with my disorder and that’s just how it is. I usually laugh it off, but with my boyfriend, I talk to him about it and how much I’m struggling. Recently, he gets frustrated when I fight off episodes, but he says he isn’t frustrated with me. I don’t know how to keep getting the support I need when it seems to be hurting other people. Have any of you dealt with this before? How do you keep from imposing on loved ones for help?

[M3rry]

Not an easy situation, all I can suggest is to find him help. Look for a local carers group, people who are caring for their own loved ones all need emotional assistance, other people they can sit around a beer (or coffee) and bitch about how hard it is but really how much all they would change is the disease. Possibly find a good therapist (many here will advise one for yourself - try to find a team where you can get parallel appointments).

Basically maintain his mental health, his emotional health and make sure he knows how much you value what he's doing for you.

(Speaking as a carer who is now more ill than my husband is - big role reversal.)

[boazk in reply to M3rry]

This is honestly so helpful. He deals with an anxiety disorder as well so we often end up taking care of each other. Part of the problem is that my issues are more frequent than his. Our biggest difference is that I usually feel better when I help him Bc I feel like I’m doing something good and it distracts me from my own troubles, whereas he takes on the emotions I’m feeling as his own. I just wish I knew how to help him keep his pain separate from my own.

[DNE92 Moderator FND Hope UK]

It is hard. I take several seizures per day and been in hospital too many times to count. My previous GP explained to me that she sees carer fatigue across all types of illness and disability. I think trying to encourage your boyfriend to keep up with social things he does without you is good as it gives him some respite. I didn't appreciate how much my husband worried about leaving me alone to go to work until we had a long chat. I had to give up work, my driving licence and was feeling suffocated because my husband was so worried about me going out and about on my own- no wonder when he's getting calls from the hospital that I've been found lying in the street (again). So we needed to have that chat. You enter the weird world of FND and then have to stumble around working out how to re-adjust. Cheers Lou

[Junebeatle]

First off this illness is extremely difficult to live with, so give yourself credit for doing just that. Secondly I would seek counseling it’s helped me to dump my feelings there. I was pretty functional & in remission for several years before this last terrible flare that left me totally disabled compared to before. I was so depressed & anxious, so I took some steps, I did Transcranial Magnetic Stimulation and it helped my depression a lot. Then I didn’t like it, but I had to start Valium to sleep because my movements & anxiety were consistently waking me up. I also found Saffron to help with attention, concentration, moods during the day. I notice when my mood is better I can ignore the symptoms better (like I have constant muscle misfiring-mainly in legs, but also all over sometimes)

I had to accept my new worsening disability, giving up lifting weights something I loved. Maybe address the mental health symptoms to make yourself more comfortable with this awful illness Keep moving forward and something my cousin told me who’s had terrible mental health struggles for decades “life is a daily struggle” once I heard that it stuck with me on the tough days. Good luck 🍀

[shali_queen]

Hi, my condition was horrible too when it started I felt like it could never end. I have gotten mine reduced down significantly over the while. And I’m hoping I can eventually have it to almost nothing. But to answer your question, what I have done for that situation, was to accept that it was going to take a while and plan out what I can or cannot do to help it decrease as much as possible. So you have to be adamant and assertive in the way where you know your limitations, and feel that you believe can help. For example, if you feel like your stamina decreased, I’d work on exercises to build it up again so that it’s easier to last physically with symptoms (like retrain myself). I’d use those strategies on my goals and told my loved ones what I want to do and tell them it’s going to be slow so I will occasionally need the help. Go and find help through a psychologist or something. I did that and worked controlling my emotions to reduce any triggering reasons for my condition as well. It’s very hard because if you want the improvement it’s slow. But if you find your emotionally imbalanced. You need to share it or see someone because I feel like that will only feed into the FND if that makes sense. The negativity feelings go in a circle and you stay in that loop of feelings. I have had people say I should move on with my life as well (hurts and I WISH I could is often how I feel). But the upmost priority is to stay positive to give yourself the TLC to break the cycle. Tend to your emotional needs so those emotions do not feed into your condition. Strategise and experiment with yourself constantly and never stop. That’s how I have been doing and it’s helping me, and encourage with your loved ones to do that with you if possible.

Please stay positive. Take care of yourself. I’m sending positive energies your way. Take care.

[shali_queen in reply to shali_queen]

And it’s hard to ask for some you care from the most. But if you stay strong for yourself you can bring some optimism in the ones you are about too.

[boazk in reply to shali_queen]

thank you so much. I have definitely made progress but sometimes i forget that i have the ability to be self reliant. i really appreciate your kind words and advice. thank you and i hope things are going well for you too.

[Ccaldwell]

My husband cares so much and feels useless to help me, and that is frustrating for him. He doesn't want to talk about my symptoms, or the latest research because it reminds him of how helpless he feels. I have encouraged him to have an outlet, and to gather support. There is nothing else I can do for him accept joke and laugh to ease the tension sometimes. It's up to him to gather what he needs. I can't do it for him.