Q: hey is there anyone else who feels alone or like ur illness is not a concern of ur loved ones.
It can be really hard - you might want to look at HollyBgroovin's Letter to family - the letter she wished she could have written earlier, but it's so hard to not only figure out how to cope oneself, but to explain it to others who have no real way of comprehending how this disease can change your life.
You might find that your family is just as scared as you are but they think they shouldn't show it, or maybe they can't. They don't want to see this happen, for you or themselves... and they do need to be educated about it - it's not laziness! I read of a case where the wife was just 'sitting around' because she just couldn't do anything. Her husband thought she was lazy. Then she got on medication and became much like her old self. Then he began to realize that it WAS NOT HER CHOICE to be sick or sit around, she was in too much pain to move.
I find when I am really down and out, some kind of basic meditation helps. Yoga or faith-based, either way. Breathing is the key. Optional: You can choose a short phrase or one word to say while you slowly breathe in, hold, breathe out. I can't always do this, (too impatient or busy), but when I'm extremely anxious, it actually works very well for me, even more with practice. . . I end up with more energy and mental focus. We're not talking Olympic energy here, just energy to deal with my day. Also gentle stretching. Be good to yourself, even when no one else knows!
Yes..I think quite a few of us go through this. Don't let it get you down it is more their problem than yours. Do the best you can for yourself and remember you are never alone.
Ur exactly right...it is their problem!!! My husband is exactly like your family..We will just have to hang in there together :)
hey thanks I really do feel alone, scared, confused, its great to know there is someone to talk to that understands because this is hard really hard .
pam/getnby
Hello
If you are newly diagnosed it can feel like you are all alone. Most RA suffers do not show phyical signs externally unless it has progressed quit a bit. Because of this, friends and family members might think that there is nothing serious going on and will not be too concerned. You feel that nobody will understand you completely, unless they have gone through real physical pain. You are not alone, there are many people and groups that you can confide in and get support. Through these groups you can find ways to educate your family and friends on what you are going through. Get your sponse to go to doctors appointments with you, or even friends and family. Nothing like hearing it from a professional if all else fails. You need the support of the ones that are close to you.
I was diagnosed with Lupus SLE in the summer of 2003. I had physical signs. I was swollen everywhere, I had a rash that didn't heal right away, and I was in so much pain that I couldn't dress myself or even hold a toothbrush properly. Then I saw a rheumatologist and was prescribed medication to help. The swelling went down, the rash slowly went away, and I was able to start doing small things. I wasn't completely my old self, but I was better and didn't really show any external signs anymore. So friends and family thought I was cured. I wasn't, I still felt alot of pain and then I was diagnosed with RA shortly after as well.
No matter how many support groups I have been to, doctors appointments, tests etc. I still feel somewhat alone. No one in my family or friends can relate to what we are going through. But they are educated now. It took some time to explain, but they support me 100%. That is vey important to me.
Whoever you are around that is treating you that way...get away from them...negative feedback only spurs stress and stress spurs flare ups..life is too short!!!! Good Luck!
Thanks!! U did help me I did not know that stress could trigger flare ups, no wonder i'm miserable certain times and not as much others. I'm letting something make my life worse than it has to be. I mean come on who would want anything that adds to this... this... this... I don't even know what to say....I have RA, HCV, BIPOLAR DISORDER II,DEPRESSION & A BEAUTIFUL 6 YEAR OLD DAUGHTER AND SHE IS MY MAIN CONCERN I LOVE HER SO MUCH...I NEED TO GET BETTER..I WANT TO...my baby girl is physically and mentally challenged she needs me but not like this. Lately I haven't been worth a sh...!Actually I am starting to try and make myself happy because my attitude matters so much anymore. If something/someone gets me down it's hard to get up. I seem to lose all independance , confidence, I have no self esteem anymore man it sucks i',m tired I want to be happy with my life even my sick ...life I want to laugh and crap i'm lonely and very much in love..this sucks
getnby
ann02 I am also looking for some type of support here in upper east tennessee, (carter county/johnson county/washington county)If you hear of any could u let me know?
Pam / getnby
My heart goes out to you. I think we all feel that way. This disease makes you feel alone I wonder if all diseases make you feel that way. It might help if you could find a Psychologist that specializes in Health. I live in Ricmond Viginia we have a great Medical College. I see one every other week She helps alot.
pp
Thanks pp. My gp has recommended that I see a Psychiatrist. She thinks I may need a mood stablizer. I have yet to set up an apt. guess I'll think about it. I have problems on top of ra that limits my treatment options.I see my rheumatologist on Tues. maybe he can help some. Thanks for the post, good luck and God bless!
getnby
Yes, RA is a difficult disease for others around us to understand. When, someone does not understand, I usually tell them to think back to when I did not have RA and remember the person I was. There is a world of diffeence!
The bottom line is that you have to ignore the ignorant, and take care of yourself.
This is not a made up disease, it is a chronic and disabiling disease.
Yes, it can appear to be invisible sometimes, so that is where I can understand that people just don't get it...but, you know your body, and your pain, I for one will not let anyone make less of what I am going through, and I in turn try my best everyday to get a handle on this RA.
Unfortunately, RA is a very challenging disease, and a very misunderstood disease. I would like to see more recognition and education on this especially in the work place.
Important:
We hope you find this general health information helpful. Please note however, that this Q&A is meant to support not replace the professional medical advice you receive from your doctor. No information in the Answers above is intended to diagnose or treat any condition. The views expressed in the Answers above belong to the individuals who posted them and do not necessarily reflect the views of Remedy Health Media. Remedy Health Media does not review or edit content posted by our community members, but reserves the right to remove any material it deems inappropriate.
Featuring Content From:
By using this service, you accept our Terms of Use. Please read them. The consumer health information on is for informational purposes only and is not a substitute for medical advice or treatment for any medical conditions. You should promptly seek professional medical care if you have any concern about your health, and you should always consult your physician before starting a fitness regimen. Copyright © 2012 Remedy Health Media, LLC. All Rights Reserved.
Ellen they, well, he doesn't take me seriously. He doesn't want to talk about it, he doesn't want to hear about anything tests, dr.s, meds, nothing i'm gonna go crazy! I have a 6 yr old mentally and physically challenged daughter and she needs me at my best she needs help. Lately I haven't been good much less at my best. I'm scared and lonely.
Pam/getnby