If you are the loved one of a person living with RA, and it seems like that person isn’t necessary making the “wisest” decisions, please know that quite often those of us who live with this disease operate in survival mode…and while we “know” what is going on, getting out hearts, minds, and souls to comprehend as much is a challenge.
If you are the loved one of a person living with RA, and it seems like that person is becoming a “broken record”—day in any day out talking about how much they hurt, and how hard things are, please know that those of us who live with this disease don’t get one second of reprieve. Not only is the attack on one’s body endless, so too is the constant assault on one’s mind.
If you are the loved on of a person living with RA, and you are getting tired of hearing about one’s disease, please know that the fact that this person is still talking to others about what they are facing is a *good* thing, and—more often than not—is much better than this person talking to themselves alone, and maintaining a conversation in their head. Chronic pain plus depression plus internalized conversations rarely lead to a good place.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
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hi i would really love to talk to you more for i have so much going on and now they are thinking on top of everything else i might have ra… i am 38 now and this all started when i was 16 with hives… but im on facebook if you would like to pm…. im a single parent and taking care of my mom and gram. could really use some one to vent to that understands what im going through… thank you so much for listening and sharing your story i want to try to do something like you i just dont know where to start…im looking into starting a support group with all the info that i been finding
hope to talk to you soon
Hi. My wife has suffered for nearly six years now with this horrible disease. I don’t fully understand it but I try to just be there for her. I’m getting better with time but it is really hard adjusting and accepting how ra effects our lives. I guess I’m reaching out for advice or just experiences that could help me . Thank you in advance.
My girlfriend of 5 years has rheumatoid arthritis. I get really sad for her when she has a flare but she is so strong and handles it so well. I’m so very proud of her.
Look, I get it that there may be some who take the knowledge that their wife or significant other suffering from RA as something that is happening to them. I get how there might be some feelings of resentment. But I don’t get how that resentment could ever be directed towards the your spouse. My wife was diagnosed with RA 11 years ago, and I’ve never had any of those reactions or feelings towards her. I vowed to love, honor, and cherish her, in sickness and in health, til death do us part. And therefore it is my pleasure and my duty to care for her and make her life as comfortable as possible. To assure her that she will never be alone in her life.
Sure, selfishness and egocentrism is definitely a path of least resistance. It’s tempting to say, that when someone gets sick with a chronic illness, that “I didn’t sign up for this,” and bail. Except for the person who is ill, they don’t have that option.
No, this is not the life or the marriage that I planned, but its the marriage that I got, and it’s up to me to make the best of it.
Rich Vestal, despite having RA, your wife is a lucky woman in one respect. She has a loving and supportive partner. I am 16 years into my RA journey and have kept as much of the bad effects as possible to myself. Despite this, my husband bailed only a few years into this but in a funny way, he did me a favour. I am stronger because of this, my children now grown are there for help even though I don’t ask. The loneliness is awful sometimes so you should be incredibly proud of yourself that you have spared her that.
Hi all I am a person with RA, for 24 years now, I’m now 47. I’d like to say first to Patricia I’m usually about if you want an ear. I actually run a support group but am happy to give you my personal e-mail if you ever want to chat. I’m in the UK so time difference will need allowing for but I check mail daily so please feel free. gilly.pidler@btinternet.com
Brett it is very much a learning process, both for those of us with it and those of you who are supporting us. You will learn over time how to read what your wife needs. Of course it’s not just us that live with it, you husbands and wives that share our journey live it too, just differently. I’m always about if you need to ask anything for you too.
Jeffery, people have said that about me too and in general you will find that those living with chronic disease tend to hide things and keep things to ourselves so like Brett you will learn to read your wife. We often will say we’re fine when we’re really not, but we all have tells.
Rich and really I’m addressing each of the guys who have posted here & are supporting their wives & girlfriends, you are the light in our night sky, our rocks and without you we would be very much lost. I have been lucky enough to be married for 28 years, together for 30 and with 3 gorgeous kids. I was 19 when we married and 23 when I was dxn and never once has my husband ever complained about his lot. In fact it’s more often me that’s said, your words Rich, ‘You didn’t sign up for this’, to which of course he replies ‘Neither did you’. A partnership is just that & those of us who have been blessed enough to find someone that sticks it out the whole way are so very grateful for your being there for us, for coming on our journey with us. Thank you.
Maureen I hope that you will one day find your ‘diamond’.
Well…
I’ve gotta say that firstly, it DOES feel selfish to be in a relationship w/ someone w/ RA AND to worry about yourself. … It does.
Here’s my brief story…
I met a precious, gorgeous, lovely man online.
We started dating in late Feb. 2016.
He mentioned he had RA & having no clue as to what that meant, I thought… sooooooo… No biggee.
Of course, like many I thought it was the arthritis of the ‘other.’
He did hide the issues. He his his pain. He toughed it out & braved it out…
It took months to realize just what it meant to be w/ someone w/ RA. & clearly, I’m STILL learning.
…& now, well, we’re six months in & I have fallen in love w/ this dear-hearted man…
& yet part of me thinks (especially when I talk to others about my apprehensions & they tell me to RUN like hell) … I am torn.
I don’t understand your disease.
The more I research, (especially online,) the more it terrifies me.
It DOES absolutely affect your loved ones.
It is a sedentary life at best…
& at worst, well, hell, I could quite easily be a caregiver to this man, in this new relationship, in my early fifties.
It scares the bejesus out of me.
Not that I don’t have it in me.
I’m in the healing arts.
I AM a caregiver… but signing up for it out-a the gate!!??…
Can anyone feel my fear, here?!… I’m scared.
We’ve been researching alternatives.
Dr. Joel Fuhrman’s philosophy & bringing it all back to diet.
Anti inflammatory vs flammatory foods.
Western medicine not best serving RA patients w/ all these toxic and cancer causing meds & NOT addressing diet.
(Big Pharma diametrically opposing the proven merits of tumeric root. Studies have shown that it is more productive w/ inflammation AND pain, than meds.)
But I digress…
My love is off all the meds now.
He WAS doing stem cell, a form of chemo, alllllll the drugs on the market; humira, ETC. & of course prednisone for 7 years since his initial diagnosis. (He is 51.)
I want to make clear it was his choice to cease the meds.
& now, he has flares every other day or so.
He stays away when he does. Even from phone calls.
I do believe he wants to hide the severity of it all from me… to protect me, yes… but also to keep me from panicking or possibly running. He is selfishly motivated too.
Regardless, before you judge me…
I must also say this; I have been a codependent/rescuer in all my previous relationships.
I believe we attract to ourselves partners who bring to light our work at hand. & at 52 & a life-time of work on myself, I truly felt beyond the attraction of the projects & those who needed rescuing.
& as I write that out loud, I know how it must sound…
I truly am not a narcissist.
I am thinking long & hard about my choices to be impeccable & of integrity; to care for myself AND to come from love.
“What would love do?”…
But here I am, falling in love w/ someone w/ a very serious disease.
One where I more than likely will be taking over on every level.
How many of you would sign up for this out-a the gate, I ask you?
(*I must add that I do not feel that he is a project & I do not feel that he needs rescuing… but let’s face it, this isn’t your normal “commitment.”)
More of the rest of the story is that I just lost my dear-daddy three months ago.
My mother became incensed w/ being the caregiver for the past few years… Again, as harsh as that sounds.. you can’t judge until you walk a mile in someone’s shoes.
I beg you. Just don’t.
For these few years, I was the caregiver to both my parents.
Holding both their hands & hearts through to daddy’s recent passing.
She’d often say, seething, never sign up for this! …
& here I am signing up for this.
My hope is that he will find ways & treatments which can put this in ‘remission.’
Fuhrman’s testimonials insist upon reversal of damage.
This is the hope I hang on to, tooth & nail.
I guess what I’m looking for HERE is support for the supporter.
Support for someone who is in love w/ someone who has this disease & who isn’t sure how to navigate it.
My biggest desire in the immediate is to cease judging him up one side & down the other when he does ‘cheat’ on his diet … & he “still” hasn’t given up smoking cigarettes.
I don’t want to be that person who runs his elevator. (I have my own to run! ie; my own issues!)
I have said that I can’t sign up for this life w/ him unless he does everything in his power for himself. ie; I can’t care more than he does.
I am honest. I don’t hide my concerns.
But I can’t micromanage. That’s so wrong.
… I just don’t know how to BE in THIS.
I want to say that I commend all you brave & gorgeous souls who are navigating this disease…
Bless you.
Sincerely, God Bless all of you. <3
… AND, H E L P. please.
Offer up, what you will.