Educating family!!

[SS2695]

Hiya all hope everyone is doing well!

Just needing some advice, it’s coming up to one year since I got diagnosed with fibromyalgia, and my father still doesn’t understand what it is, I’m not sure why but he’s never really spoken to me about it, and he seems to be blocking me out on my bad days, has been since I got diagnosed, I don’t know if he does this because he doesn’t want to face that his youngest daughter is in pain like I am, or if he doesn’t even believe that it’s real! We have become distant as I just really need his support, but I always feel brushed away when I approach the subject, and even when we talk it doesn’t seem to sink in, almost everyday I feel some sort of pain, and if I make mention of it to him he will say “well where’s your tablets” to which I always reply that the doctors have tried meds but they don’t work, I don’t want to sound selfish but I really hurts knowing that he doesn’t even know anything (or so he seems like he doesn’t) about what I go through and have been for years, or it could be some other reason dad isn’t telling me about, he doesn’t know a thing about me now and how to support me, how can I approach this with caution enough to educate him??? I don’t want to sound silly but I’m almost 21 but some days the pain gets to bad that all I want is my parents but I feel like I can never go to him, anyone have this with their family?

[LoneEra]

Sorry you are going through this. I don’t have issues with my immediate family, but I do have trouble explaining to people I work with.

If you google “what does fibromyalgia feel like” and then look at the images, there are some good visuals that might help explain to your Dad? Maybe he is just scared of the unknown and feels helpless?

This is quite good too: medium.com/@toastthebadger/...

Good luck x

[SS2695 in reply to LoneEra]

Thankyou! I really hope this works!

[malonso6884 in reply to LoneEra]

Wow! Thank you for those 2 suggestions. One of the articles I read REALLY did explain in simple terms what it feels like. Like running a 10K with no preparation and no walking allowed. The way you feel the next day is how I feel today lol. Luckily my boyfriend is very sympathetic but he doesn't really know what I'm going through. Some simple information to read really will do a great explanation. Thank you for providing those websites.

[Hidden]

I’m older single. I developed it in my 40’s. No one in my birth family gets it they’re rude and uncaring and vocally calling me names. They think they’re civilized and they do this. Yes I get it. A condition they don’t see.

[dannyxox]

Hi my dad was the exact same his lines were have you took ur tablets or are you in that bed again. One day I just blew burst out greeting n said of course I've took my tablets do you think I like living like this that was first I've ever shouted at him n he was taken back I'm youngest also in 40s now but always been daddy's girl. That day was turning point for him coz he sat with me n we talked all day I used the spoon theory to explain it to him in the end bcoz all he kept saying was there must be something they can do for u you canny go on like this (I suffer with really bad spasms sometimes they can last for over week I'm just in constant spasm) hopefully you find a way to get through to your dad he will be feeling usless because there is nothing he can do to help you. Sorry for story take care gentle hugs xx ps Google the spoon theory xx

[waylay in reply to dannyxox]

I get spasms like that too! What have you tried to deal with them?

My Dad is the same, except it seems there's no chance of educating him...

[dannyxox in reply to waylay]

I take baclofen 4x a day and I sometimes take diazapam but try not take them if I can help it I've learned just to go with it n let them run their course. xx

[waylay in reply to dannyxox]

I get 30 X 5mg diazepam once a year. Luckily I'm very sensitive to it, so I usually only need 2-5mg at a time, but I get a lot of spasms, and they can last up to 9 days. :/ Baclofen... Going to ask about that, Ty.

[dannyxox in reply to waylay]

Hopefully you get them and they ease spasms a bit for you. Let me know how you get on. Take care gentle hugs xx

[waylay in reply to dannyxox]

Ty!

[worried4me5]

I think most people feel useless about this condition and have no idea what to do to help you feel better. Maybe there is information out there that can help him to help you? Then he might be less likely to avoid talking about it with you?

Hope this helps. I tend to drop little bits in with my family when we speak, like I tried to fit too much in my day then I was laid up unable to move for two days and the pain was really bad, could hardly walk.

I really hope you can get back to the closeness you had with your dad. Good luck x

[Hidden]

As a parent it’s really hard to see your child unwell and in pain, no matter what their age. It makes you feel very helpless—- a parent is supposed to be able to make everything all right for their child. ( and my child is double your age And we all know men find the touchy-feely things really difficult to deal with !

I think giving your dad a few links or print outs of information is a good place to start. You could also try writing him a card just saying how you feel and what you need from him. This takes the immediate emotion of a face to face out of the situation. If it upsets your father to read how bad your fibro is ( and as a mum it’d upset me) his tears can be in private, and then he can come out stronger and fighting your corner.

Fibro isn’t easy for us to understand, just how can it affect so many parts of us ? And all at once ?? So it is hard for others to grasp, especially when on some days we don’t look ill.

From what you write, I think it sounds as though your dad wants to help, he just can’t find the right words or the right way.

[SS2695 in reply to Hidden]

Thankyou for replying, I’m willing to give anything a go!