Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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lionprincess00 04/07/2014

My mom and mother in law are loving, kind, and wonderful. I'm not complaining about them, but their perception is so off and I find it frustrating. When I speak of my ra, I get them telling me their problems, comparing, and saying it's just something we have to learn to live with (mom in law said something similar to this). My mom had crooked dip joints from osteo, non painful. Slightly deformed wrist, osteo. Knee hurts, osteo and baker cyst. My mil has osteo in her knees, probably will need replacements in the future and they hurt, yes. Back bothers her some. Feet hurt a lot, terrible looking bunions. I'm sure she hurts, but it's repairable with surgery! My father in law needs a total knee replacement and he will get his relief. My aunt in law got a hip replacement and her other hip popped, that's bone on bone baby she laughs, and will replace the other hip soon. They hurt, but it's fixable.

"I have to learn to live with it, look at me I'm living with it, you can too."

I want to yell I'M 35 YEARS OLD! You're 60 aunt in law, 65 mom and dad in law, and almost 75 mom! I can replace these fire joints, I can't fix it. I can try to maintain a life, but I can't fix this. I have 40, maybe if I'm lucky 50 YEARS of intense never repairable ra issues. Why don't you see?!

I don't want to live in daily hope of remission and feel years from now cheated it never happened. So if I ever achieve remission, it will be an awesome surprise that I never expected, instead of a potential disappointment I never received.

Anyway, they all are clueless, and their comments are slightly ignorant and insensitive despite being wonderful individuals. I don't hold it against them, but it is ever so frustrating. I'm glad I have each and every one of you to understand.

If my gma was still living, I'd be calling her to complain. If she told me, well it's something we have to learn to live with, I'd be so much more impacted by that statement. She developed ra around 50, and passed about 76, so she got it. Thanks for the vent.

I know you all have felt this way at least once.

Lynne723 04/07/2014

You're so right, LionPrincess. I've felt this way. I think you answered your own question when you said they are "slightly ignorant and insensitive." Ignorance isn't stupidity. They just can't possibly understand because they've never walked in your shoes. Along a similar line, my husband was laid off twice in the 2000's (automotive industry) for two years each time. Our two daughters both got married during the first jag. He found work to get us through, and I worked, but it was really tough for a while. When I mentioned to my mother how scary it was, she chuckled and said, "Oh yes, we've been there." My reaction was, "What??! At my age you were retired and had traveled half the world!"

Yep. So glad we have us!!

sammyo1 04/07/2014

I've heard the same thing from others over & over.
People just cannot comprehend how nasty this can be.
It's unlike any other form of arthritis. Then again we've all discussed how misleading the commercials are.
It takes over ones life & zaps our energy, strength & ambition if you allow it. It can cripple & deform if left untamed. Opens the door for sickness any given time & puts the organs at risk. It can randomly choose a joint at any moment. Not to mention all the other tag alongside like the ligaments, tendons & cervical. I'm sure I'm leaving something out here.
Now that's a huge difference from all the other forms, not that they don't have their own pain.

Then again they what lies ahead when climbing out of bed for each day. With RA you hope some random problem isn't waiting to rear it's ugly head.
It's just hard for others to comprehend. Heck it was hard for me when I was first diagnosed. Could not believe all the things involved with this disease. Thought I knew but I was so far off.

People don't want to believe something like RA can be so nasty & life changing, especially for those so young.
I get it, now if others would life would be so much easier.
Sammy

lionprincess00 04/07/2014

Thx guys. I mean I care for all the kids, aged 18months to 13. I do all laundry, cooking, cleaning. I've been doing the shopping, with all the kids, though my husband helps when the ra is real bad. Well he helps if I ask, but I've been functional lately and have tried to maintain normalcy. My mil is raising a grandkid aged 8 and working, but I think they just see it from their eyes and perspective, never comprehending the scope of my journey. My husband tells me, no, no one will understand. He admits he doesn't even understand. It's isolating at times. Thx again. We all read these posts almost weekly from members, don't we?!

annettearizona 04/07/2014

Ofcourse you are right to the way you feel..life isn't fair that it strikes younger people with health issues ..well it is actually a shame that it strikes anyone and at age,but when you're young you should be able to do whatever and whenever without physical limitations or worrying about pain or meds! But life throws at us whatever it wants and we have to find a way to do the best that we can as an individual to live life the best that we can!

deleted_user 04/07/2014

Thanks Lion princess for reminding me that I've been there and still experience those moments of frustration. On my best days I try to give others the benefit of the doubt, that their inability to 'get it ' and their desire to compare, etc. is just their misguided but intentionally sincere way to relate. That is a Reminder to me that I need to pay forward a different mindset with others who are struggling as well...not to judge compare or minimize their journeys. This group rocks in that regard! I got this whee I was 35 and am now almost 60...in all that time nothing has really changed except to find like minded people who do get it. I'm so grateful to be here...you guys rock! Thanks for venting! Carol

m06455 04/07/2014

I understand where you are coming from......anytime I feel the need to talk to family about my RA they do the same thing. So I gave up long ago and do not discuss it with them. Feels like the big elephant in the room sometimes but better than listening to them drone on about how bad they feel.

nonightshades 04/07/2014

I'm in an odd way rather lucky in this regard. Before the RA activated, my family/friends and I were not that "intertwined" so i have no more feelings of isolation than before and therefore no less feelings of being understood. Shoot, no one understood me before so they won't now. For years the conversations that i have enjoyed the most are with myself. Odd how it worked out for me.

Hey princess, live up to your chosen name! You are you, you are totally unique. There is no person in this world including your children or parents who understand you. Your self valuation is not dependent upon the mis-informed opinion of others. Be Princess in your head, that is your territory. It is no one elses realm so RULE IT.

deleted_user 04/07/2014

It sounds like they are trying to empathize with you and not knowing how to do it............ except for your aunt in law.

cindyleb 04/07/2014

If your not walking in the RA shoes, you don't get it!

My best friend, or at least I thought she was.... her comment when I was first dxed 2 years ago was "Oh I thought you had cancer by how upset you are" Then she added "there is so many meds you can take for that, my MIL had it" Her MIL had OA in her hands... She has never understood all I have to deal with and with those comments I stopped right there and then talking to her about it. I sit at lunch with her and on a daily basis listen to her say how tired she is and this or that hurts... always something, but I never comment.
If my friend came to me and said they had something wrong with them and I didn't know about that condition/disease first thing I would do when I got home was google it, so that I would understand what is going on and how that person feels.

Don't worry Liomprincess, we understand!
Cindy

Thewino 04/07/2014

LionPrincess,

My mother and father are kinda clueless as well. My Mom is pretty sick but just doesn't seem to comprehend that I have developed a lifetime disease and live daily with its consequences.

I have reached the point that I'm just not going to try and make them understand any longer. It was frustrating to start with but I refuse to let them push my buttons any longer.

I understand where you are coming from. I'm sorry you are caught in this situation as well.

Warmly,
TheWino

deleted_user 04/07/2014

My older brother has RA which is very well controlled. Sometimes he doesn't get my situation either. A number of years ago my father had a base finger joint that was swollen and red. He asked my mom is this would be like what Jane has. She said "yes". He said "all over her body" "Yes". "Oh, my" At least he had an inkling.

Your vent helps us all get rid of our own frustrations. Thanks for posting.

Clueless is as clueless is.

lionprincess00 04/08/2014

Clueless is right plattejh! Thanks again. I think my half sis with ra does the most damage in my cause because she's had it 8 yrs and works full time in a shop, goes riding with her husband, to the lake, etc. No meds to treat, no diet change, no herbs. Nothing. And her numbers all diagnosed her. She gets nodules and has flares, but it obviously doesn't bother her much at all. When I wasn't medicated in the beginning, I was virtually bedridden. I was unable to function. It was horrific. So I'm sure she acts like it isn't anything to mom when they talk. My husband tells me to ignore it. Who cares what others think. Don't worry about it etc. I try to take his advice. I'll learn with time.

Side note I can't believe it's been 7 months since I first had my big flare that sent me to the rheumatologist. Where has the time gone!

aprilraven 04/08/2014

I get it.

I try to remind myself that to each person, their experience of their worst pain is really bad to them because they haven't experienced anything actually worse than that. I try to remind myself that many people are trying to relate to me so I don't feel alone. I try to remind myself that others really just don't want to know, and that's okay because they aren't in my life day in and day out. I even try to remind myself that before I experienced this, I would never have been able to comprehend it either. I really couldn't and I'd been living with Fibromyalgia for over 10 years at that point. Most of the time I'm successful at reminding myself of these things.

But some days, I just don't care. It sucks. It's unfair. I didn't do anything to deserve this. I don't believe it will improve enough for me to not be disabled. Ever. After I've made myself hurt even more from my emotional meltdown, I feel numb emotionally at least. I lay down and go to sleep, and start the next day trying to remind myself....

sammyo1 04/08/2014

You would think as adults we would know with disease & illness you cannot compare one person to another. Yet it happens.
There are degrees, pain tolerance, whether a med works or not, diet is a factor for some, etc............
I have something like thus in my family. My sister is in her 60s & had RA since late teens early 20s. She has so many artificial joints it's unreal a& the RA has caused internal problems, heart, lungs etc....
My family compares but I realize she did not have treatment options back then with aggressive RA.
Still it can be very hurtful especially when I was her caregiver & family pitched in. I have some help so I'll count my blessings but not from the very family that helped my sister. That's OK I'm stronger for it.

It's just wrong & no matter how strong you are it can be very hurtful not to have the understanding of those you call family.
I get it.
Sammy

depotblue 04/08/2014

i don't think birth family has to be the be all and end all. I have intentional family and some of them are as old or older than my siblings in terms of how long I have been in friendship.

I feel responsibility and respect to my birth family and blood relations. but I get love and devotion and mutual caring and mutual nurturance from my intentional family.

i also use the joy and affection premise not the responsibity and respect premise.

If I don't get weekly or monthly joy and affection from said relative or blood relation and give it back in turn I am probably not going to get blown over with validation about my chronic disease.

I go make withdrawals from the bank where I have made the most investments and share the most mutuality: my non blood family.

Birth family can be over rated. it's a set up for being disappointed. You over expect, compare, fight, and yadda yadda :)

Depot

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