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Needing emotional support
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kitkatmebk posted:
Hi, I was diagnosed 5 years ago but have had RA symptoms for almost 10 years now. I also have DDD in my lower back and Syrogen's Disease as well. There is no way to really described the ultimate pain I deal with every day. I'm the type of person that I keep it to myself and don't complain because I really don't look sick. This silent disease is difficult for family and friends to really understand the level of pain I live with. I don't complain because it's like the boy who cried wolf and don't want my family to think I'm taking advantage of them. I'm just looking for emotional support and understanding. I don't tell anyone about my issues due to the lack of understanding and empathy if they don't have it. My family is loving but not really sure they get this disease and how difficult it is. How does your family and friends treat you and any suggestions of finding an outlet to take some of this burden off of me and to get acknowledgment for the pain I really do experience??? Your thoughts??
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DIYSTER responded:
I'm very lucky in that my family and close friends all seem to understand the serious nature of RA (btw, I have Sjogren's Syndrome, too). For those I'm just introducing the news to, I don't use the word arthritis because I don't need to tell you how people react to that. Instead I tell them I have RA which is an immune system disease that destroys your joints, skin, and organs over time and needless to say, that process is a very painful one. That usually gets their full and complete attention and they usually say, wow, I didn't know how bad that stuff is!

As far as an outlet, there's nothing like talking to others who share the same or similar problems. That's where this message board has been a tremendous help. It is also a great way to get ideas and tips on how to cope with day-to-day living. I hope you stick around and eventually become a regular "contributor" here! Take care and hope to see you here again soon.
 
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lcover responded:
Hi Kitkatmebk,

I'm sorry that you don't feel like you are getting the support you need. I'm happy to talk if you ever feel like it.

I was diagnosed with RA this summer and I can relate to having people be dismissive about the disease. I like the way DIYSTER explained it. I think people hear arthritis and they think it's no big deal. I have to remind myself that they don't know or understand RA and how it feels.

I know you said you tend to keep it to yourself, but maybe it's time to talk about it. All you can do is try your best to explain how it is effecting you emotionally and physically and ask/tell them exactly what you need from them.

My family and friends are supportive although I feel bad for my husband having to through this. Thankfully he is a caring person and he tries to help however he can. A lot of times listening and love can help a lot! I recently joined these discussion forums and I'm finding they help too.

I don't know if you are open to holistic methods for the pain, but I highly recommend accupuncture. That is as long as you don't have a fear of needles! ) I use it for other issues, but it has done wonders for me.

Good luck & I wish you all the best.

Take care!
 
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Tamaroon responded:
Hi kit. I'm glad you posted as I think there are so many of us in the same situation. I am 56 yrs old, live alone, and was diagnosed 7 yrs. ago. I have yet to get my family to show any interest. I have frequent flare ups and the fatigue is overwhelming at times. Whenever I have to decline a family function, they don't bat an eye. They believe I "exaggerate" my "arthritis". After all, doesn't everyone have some type of arthritis. Because of my RA, I miss work alot and my work is what keeps me going and I truly love my job.
I have learned to suffer in silence and rely on my medical providers for support. We all need emotional support. I've learned that if we can't count on family or friends, we need to find other resources that will provide the support we deserve.
That's why I finally decided to join this community. Take care and stay in touch. This seems like a safe place to share.
 
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Gonenuti responded:
Hi Kitkatmebk, I too have the exact same issues, although my children are both almost grown.
I'm 47 and my family doesn't get it either about the pain and especially the exhaustion. Yesterday and today I actually feel almost on the normal side as far as fatigue. I really wish it would last forever. But I mentioned this to one of my family members about being so exhausted, she says something to make me feel like it's not as bad as I make it out to be. But, It really is!! I can't even motivate myself to get anything done around the house due to this horrible monster!!! So, I guess I will have to be more like you are as far as talking to my family. It's not worth the disappointment you get every time you try to explain anything. I shouldn't have to defend myself for things not getting done around the house when the family I live with understands. They're the ones that count!!
 
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kitkatmebk replied to Gonenuti's response:
I wanted to thank everyone for such wonderful support. I feel that my voice is heard here already. I will definitely take everyone's advice. Just being understood is comforting for me. I'm not faking or am I enjoying any of this. For me, I will still be silent of my pain just so I feel that I'm not looked at with disbelief and lack of understanding overall. I plan to share my thoughts, pains and happiness here because all of you are so welcoming and understanding. I truly appreciate you! <3
 
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Jes67 responded:
I was just diagnosed by my pcp 2 weeks ago after hobbling around for a couple years and finally going to see a doctor. He referred me to a rheumatologist which I am seeing in 2 weeks. I researched RA and went through the disbelief, anger and why me stage. Then I downloaded alot of info and sat down with my husband, daughter and best friend. I said that Im not trying to get attention, or worry anyone but that these 3 people are the most important in my life and that I would like them to read the info. I said that there will be times that my disability will hardly show but that other times I might not be able to get out of bed and that each day will be different and that they need to understand what is going on if they want to be in my life. They were great, they read the info and asked questions and I am very lucky to have such understanding people. There are the ones who ask what is wrong when I am limping around and when I say RA they usually say oh I have arthritis too, I say oh is it osteo or is it your knees etc when they say yes I say oh I wish mine were that kind, it kind of puts them in their place, Im kind of mean that way. Or I say yes I used to think all arthritis was the same too.
 
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coaleman3 replied to DIYSTER's response:
my family seems to understand that i have issues with ra as well.they are loving and supportive but i still feel like i'm alone and distant when it comes to relationships.i have psoriatic ra which is very painful.i'm sure i suffer from depression as well.i am working and wish to continue but i'm afraid that my future want be good as far as being productive.i just want my life back.i feel like a'm being robbed of my joy and contentment.i have to rely on pain killers which i hate.i have recently started humira and have had a few good results but not what i hoped for.i guess i just wanted to say you're not alone.its hard to be positive with this disiese but i have to try.good luck to all who sufure with this and may God bless and heal us all.
 
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KateyScarlet replied to DIYSTER's response:
I am so greatful to have found this site and people who are "in the same boat" that I find myself in. Before the actual diagnosis I thought I was losing my mind. While putting a name to my troubles was initially comforting, once I started reading about RA it scared the heck out of me. I had no idea how serious and debilitating it can be.
I too do not think that my family truly understands the seriousness of RA. I don't want to frighten them, but I do want them to understand. I really appreciate Diyster's explanation of RA and plan to use it in the future. I also plan to sit down with the family after the holidays and spell things out for them. Again, I don't want to frighten them but it is important for me and for them to come to terms with this.
I am so glad I found this discussion forum and look forward to "chatting" with you all again soon.
 
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amyd39 responded:
I never thought much about this disease until I was diagnosed with it. Nobody understands. I begged my husband to read about it. He said I should get off all medicines, suck it up, and deal with it. He has now abandoned me financially and I am having to work 2 jobs. Luckily, all kids are grown and on their own.
Go to support groups, talk to your doctor and he may have suggestions. Your family takes it for granted that you will be there for them no matter what. When it comes to giving back, most families are selfish, Not from not loving you but from ignorance of the disease and the pain. There is no way to make them read and understand. Just find other outlets as I said before. Find people in the area that have it or online support groups. Hang in there...you are totally understood by everyone on this site. It would help to have a hug and have someone say "I understand". I know.
 
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RApartner responded:
Hi Kit,

Bet you will have tons of agreement on your story. I have Lupus, RA, Fiybromalygia and Syrogrens. As with you, no
one understands the pain, the fatigue, why I can't do certain things on certain days. It is mostly because we don't "look"
sick. I have a friend with severe RA and she and I have discussed this at length. My advice is find someone you can talk to, either in person or this way. The understanding and support mean everything. Good Luck Dear
 
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rabtab replied to RApartner's response:
This is the first time I have ever read or posted to a discussion site. I too have RA have spent many years with different diagnosis, and always going back to RA. Sometimes I even feel I am just a whiner. My family is very loving, but when it comes to me needing help or sometime just to rest it seems they seem to think " so what is it this year" It was interesting to me to know I am not alone with this. Thank you.
 
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An_215866 responded:
I am 56. I was diagnosed RA 9 yrs ago in my neck. It developed to my hands and feet. I went on with my jobs without complaining as noone would understand. Lately as I was dizzy when I wake up in the morning, I went back to an RA specialist. He told me that my central and hips spines have been narrowing due to too much stress and hard work.Internally I have grown old before time. Nothing could be done about it. I only have to be careful about not lifting heavy things, no turning my head in a brusque way. Take some calcium and pain killer like olfen or ibrufen. I know my family won't understand it as we have always been fighters in the blood. How can I ask someone to help me when I have never done it before. That's real hard , I feel quite useless and angry with myself when I can't manage something. I am trying to adapt myself to a new way of living. So as you see you are not alone. Maybe with time we'll accept it and manage to live with it.
 
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horsedogcats responded:
I totally understand where you are coming from and I too am in moderate pain in all my joints everyday. I have joined this community to do exactly what you are talking about. Have someone to understand and I feel that is the Key. Noone can understand what we are going through except someone going through it. No one can empathize with us, not because they do not love us but because they are not living it every second of the day like we are. I work through my pain every day and am trying not to take a lot of medicine. I fear that one day I will not have a choice. I am 49. I love the outdoors and was raised on a farm, so hard work is not a stranger. So not being able to do the things that use to come so easy is depressing. I hear you loud and clear and know that what you are going throught is very real. But stick with the folks that understand and we can help each other through this.
 
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sheanne5664 responded:
Hi...this is also my first time to join in the discussions, but I felt so comforted reading so many stories that are so similar to mine. My Father had RA and I watched him suffer so, and his body become so disfigured. He died when I was 24 from heart complications. I began suffering from RA in my late twenties and went to a rheumatologist who looked at my fingernails and told me I did not have RA. I guess it became dormant for several years after that, but in 1996, I was diagnosed with DDD, from then until 2000, had three disk replacements, bone spurs removed from around the replacements, and a titanium plate put in my neck. I began to suffer in my knees and my primary care doctor ran some blood work and told me my RA factor came back really high. I went to a different rheumatologist and was diagnosed with RA. He began me on plaquenil and I took it for 8 years. I am 54 now, have also been diagnosed with fibromyalgia and hepatitis C. Talk about combatting illnesses!! I have been on Remicade infusions with methotrexate for two years now and have to keep a really close eye on my liver. My two doctors in charge of these diseases work closely together and I feel fortunate to have them. Recently I also had to begin pain management because the pain became unbearable in the mornings and took forever to subside. The PM Dr. told me I had the body of a 75 year old, and I would probably have to keep a small amount of morphine in me for the rest of my life to function anywhere near normal. That really made me feel good!!! I have good days and bad days. I have a wonderful partner that is very supportive. She read up on all my "ailments" when we first got together and I told her she must be up for the ride of her life to begin a relationship with someone in my shape...but she did it anyway and 2 years later we are even stronger. She goes to my infusions with me, and is very understanding when I can't do alot of housework. I started receiving disability in 2003 so that helps with my medical expenses..all I can say is to all of you battling this illness, my heart goes out to you and I am glad I found this little forum where we could talk to each other...thanks and best of luck to you all.


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