Coping

[Jimi_B]

How do people cope with partners that dont understand what its like living with fybro?

[Yassytina FMA UK Volunteer]

Hello , yes it’s hard to describe how we can feel on a daily basis, I tell my hubbie it’s like waking up with flu no go, aches/pains but with no cold, I think if your partner was with you before you got diagnosed with fibro and see the struggles and some days the decline I’d like to think deep down they really do get it but hard to see the person change and sometimes our close family members that share our space are actually in denial as they dont want to see it happening to someone they love, I’ve often said here say what happened if shoe on the other foot you would need some empathy and kindness, life can change at any minute for somebody that was once 100 percent healthy. It does help to have a chat here ,we truly get being in this big unwanted club we didn’t ask to join 😔. I hope members come along with some good advice , take care.

[saluhouse in reply to Yassytina]

Hi Jimi B. Fibro is a very difficult condition to explain - I’ve always felt family and friends think I am exaggerating my symptoms. In actual fact - I try to hide a lot of my problems and often pretend to feel better than I do.

I’m a widow - so don’t have a partner to worry about. But I did see a friend recently who I hadn’t seen since all the lockdowns.

She asked how I have been - I answered truthfully ‘up and down - had a few fibro flare ups’. To which she replied ‘Oh - are you still banging on about that silly illness. It’s not as if it affects your major organs!’

Have to say - she has heart failure due to heavy smoking.

So - in answer to your question - I don’t think anyone really understands fibro - except another fibro sufferer. Personally - I’ve had a lot of help from being on this forum.

Xxx

[paula9087 in reply to saluhouse]

I agree it’s the same for no partner but my son, keeps telling me to do exercise. I used to do gentle exercise in the pool and circuits no running involved, iv forgotten what it’s called but it’s generated for disabled over weight to get moving. You have to be referred by your doctor and you pay for the six week course which works out a good price because you can use the pool everyday (the aqua class is twice a week) and the gym. Since we have been lock down and not able to go to the leisure centre I have noticed how stiff I’m getting and with the weight iv put on I find it hard to get myself off the floor lol. But back to your point no I don’t think anyone really understands unless they have it themselves. My apologies for such a long winded reply x

[Katie2144 in reply to saluhouse]

Get rid of the friend first of all as negative comments can fester in your thoughts. I have had Fibro for over 30 years and had a lot of problems with other peoples attitudes. One day I just thought why on earth am I wasting my precious life even bothering with them. It can be difficult but so worth it to ditch negative uncaring people. My late husband never got Fibro at all even though he was very caring when I had spinal surgery because he knew that it was caused by slipped disc problems. Fibro is a different animal. Make an appointment with your partner to see an occupational therapist (when covid allows)and this may make him or her open their eyes to what is a painful often soul destroying condition fibro is. 👍

[NannyNooNoo]

Someone posted a brilliant (in my opinion) link on another forum yesterday, I’ve put the link below (🤞🤞).

I’ve tried so many times to explain to my other half - this has done the job brilliantly. Not only explains some of how fibro feels, but also the various treatment options.

stlukes-stl.com/health-cont...

[Midori in reply to NannyNooNoo]

Thank you I have saved it. Looks very interesting.

[Jacksono]

With great difficulty. Slightly different situation. My partner has been great and works hard so I don't have to. But, we have 3 kids, one severely autistic and I struggle at home on my own. It's very much like being a single parent. My mum thinks that as I don't work, I must live the life of Reilly. She makes fun of me, saying I'm posh because I pay someone to iron all the school uniform and work suits for my husband. She doesn't understand that I physically can't stand for hours ironing, which would be difficult if I didn't have fibro, as I have a child that never sleeps and I'm exhausted. It's caused animosity on my side, she is oblivious. She knows my diagnosis. As well as fibro, I'm bipolar, have Raynaud's, high blood pressure, anxiety. She's found me in a bath of cold water and had to take me out when I became acrophobia. But she has never once helped me with the kids, shopping, house, anything. Yet she drives 150 miles to my sister's and does her ironing and stuff because my sister works so needs help. I don't know if your partner is similar. Expects you to be the same person, when you physically can't be. Give them as much information as you can. Research papers, NHS, fibromyalgia websites, to try and get their heads around it. Explain what you feel like. Take them to hospital appointments. Don't let them push you into trying too hard to do what you can't, as you will end up feeling a whole lot worse.

[Malwimmy27]

There's a letter style info on the internet titled something like "A letter to a loved one"It explains exactly what fibro is and how it effects us. I'll try and find it and send it to you

prohealth.com/library/a-let...

[Jimi_B in reply to Malwimmy27]

Thanks dear i would love to read it xx

[saluhouse in reply to Malwimmy27]

Hi Malwimmy. I’ve just read the link you recommended. Found it very interesting and informative. Thank you so much. Xxx

[Midori]

Basically in only two ways. If you can't educate them, then they will have to be gone. Life is too short to deal with folk who don't or won't believe how Fibro makes you feel. I know it sounds brutal, but this is Your Life.

I have tried educating folk, if they really love you they will learn how badly the weather, pain, exhaustion, and everything makes you feel.

Nowadays the only man in my life is my son (carer), and I feel guilty that he chooses to look after me and sacrifice his own life.

Cheers, Midori

[Jimi_B in reply to Midori]

Thanks , its exactly how i feel right now about things , sometimes i wish a had a partner with fybro so we understand each others limits and care for each other xx

[Glosgran]

It's as if someone has taken a huge syringe and sucked out all if your energy. It's like walking through treacle wearing wellingtons and if you could see it, it would look like this:

What fibromyalgia would look like if you could see it.

[Jimi_B in reply to Glosgran]

Thats scary, but so true

[Glosgran]

Get them to read The Spoon Theory:butyoudontlooksick.com/arti...

[Jimi_B in reply to Glosgran]

Thanks so much

[redmaple-5]

Your partner is yearning for the old you, what they don’t understand is you are too. It’s a very difficult illness to deal with mentally and physically.

[22amethyst]

It’s hard isn’t when they tell you it’s all in your head ! My partner now understands what I go through especially when I cant even get myself out of bed some mornings without help

I got him to read up about it and watch you tube workshop videos as it’s right across the scope.. hope this helps x

[JayCeon]

I'm fortunate that my wife sees my pain... often a bit more than I do. I read in a study that women supposedly "catastrofy" their fibro-study more than men (Fibromyalgia in men and women: comparison of the main clinical symptoms, 2012).

pubmed.ncbi.nlm.nih.gov/222...

Then I heard this phrase in a talk by a clinic used to justify the importance of psychological self-competence in the multimodal pain therapy - without meds - that is used (and prevalent?) for fibro and similar diseases here in Germany. The clinic was the (inpatient) pain clinic next door to the rheum./fibro clinic I was in myself last year, so it all rang a bell. I thought it was great that they concentrated on physio and psychology (*without* saying it's just in your head). Unfortunately it didn't help me personally at all, because I'd found physio that helps me already, and almost all of the new ones hurt my probably severe form of fibro. But the other fibromites there were quite happy.

Back to my wife: Sometimes I feel she catastrofies *my* pain, and keeps thinking I'm overdoing it a bit, which my best docs say is OK if I rest after. That doesn't get me down tho, coz I'm an active cheerful optimist, who then cheers her up ;-P So who's who in the meme below?

And it is nice to have an understanding partner, who has the same difficulties explaining to others why "I am still not better yet..."

A person who truly loves you sees the pain in your eyes

[LoneEra in reply to JayCeon]

Dangerous conversation to be having on International Women’s Day 😂 Love the sentiment of the pic, though. So true ❤️