Some family members are overprotective, and others are just supportive and sympathetic. There are those who understand, those who don't understand, and those who don't want to understand. How did your family react and how did their reaction affect you? Share Your Story
People just don't care
- Unfortunately, people just don't care. I remember when I was hospitalized with my first illness, my father said something to me and sent me to the bathroom crying. He passed without being on speaking terms with me because I said he needed to respect me to have me in his life. Sad, huh? If people are healthy, they don't care and if people are unhealthy, they think they have it worse. Now, I just keep to myself when I'm really bad, because I'm too sensitive to fight back.
- —Guest sue
What can we do?
- Up to Aug 2011 I never used any medication, I just never got ill. Then suddenly it hit me. I was in hospital for 6 days after being diagnosed with RA. You cannot explain to people who don`t have it the pain and suffering. I am now on medication but still do not know which is best! Is there someone there that can help? My family is very supportive, but do not realize the full impact it has on one`s daily life. I am 61.
- —Guest dawie
Too hard to explain!
- I just feel like no one gets it. If I say RA, they say that's arthritis. I have it too!!
Family and employer
- My family pretty much blew me off, even when I described what I was going thru and explained the difference. I went thru 4 treatments before I became better however I am still trying to get off steroids. They really don't understand the fatigue. My new plan is to leave information around the house. I was lucky because I could retire after 34 years with the VA because my supervisors really did not understand and did not want to. Now I work a couple of days a week at a Theme Park and my supervisors are great and understanding. My wonderful daughter-in-law is one of the very few who does understand.
- —Guest ruthee46
- My husband left saying that he was afraid there would be no one to take care of him when he was old. I am 62 years old.
Ignorance is terrible
- When I was diagnosed with RA I asked my parents to please read up on the disease so they could get a better idea of what I was going through... the pain, the treatments , the fact that there is NO cure (they still believe I just haven't met the right specialist). It's so hard living with family that likes to tell you what to do about your disease when they know nothing about it.
- —Guest Juniorbetancourt
- i have been diagnosed 5 years ago and have methotrexate tablet 5 mg once a week. I am starting to feel having some energy back but a month ago after an ultrasound and a CT scan revealed that I have scarring on my heart and lungs. My doctor stop the methotrexate but I am still having trouble breathing and the pain start to be untolerable but I said to myself at least I made it to 50, now I am praying to live just to see at least one grand child. I am still going to series of tests again but no medication. It is very hard to explain to people especially at work when I look okay but I am feeling pain inside. It is a dilemma, I do not waste my time explaining at work how I feel I just do not go to work and I see my doctor for a certificate to cover my sick days. The only people that can relate are people with the same illness.
- —Guest eufrosina kent
- Same as guest eve. My family just said that everyone has arthritis, so just live with it. I have RA & the pain is awful. I feel alone also.
- —Guest Jan
- When I told my family, my husband and son didn't think it was something serious because it doesn't show. I'm tired all the time and the pain is there too. My mom is the only one who seems to care and understands. Sometimes I feel so lonely.
- —Guest eve
Just like nothing
- I was diagnosed with RA since 22 y/o. The first time I heard about this, it was just nothing as I thought it was, like an arthritis of old people that comes and goes but the pain was different and so intense and more joints were involved so I consulted a Rheumatologist and after a series of tests, she confirmed I had to take meds. It helped to ease the pain but during flare ups, I couldn't move normally, there was fatigue and too much pain. After discussing it with my family, at first, seemed nothing because they couldn't believe it happened at my young age. Now that I'm already 36, people would say I'm normal because I look healthy but they don't understand how I feel and the frustrations I am going through, limited in all while most people enjoy but thank God, with His help and my family's support - I'm still alive, though with multiple contractures, still aiming to live more years .
- —Guest guest monet36
Most can't comprehend
- At this time it is a disease you can not see. I have been pretty quiet about this whole thing. Most people make assumptions to fit their own needs. It is hard to imagine such intense pain when there isn't something tangible to connect it with. Human nature/ignorance I guess. It is hard to plan. That is difficult to those closest, as it impacts their life also, and this weighs heavy at times. I pray patience stays steady and love prevails...the power of positive...trying to keep in touch with that concept.
- —Guest pat
- I'm tired all the time and I dunno if anyone truly believes the pain I'm in. So, so far I don't feel much support. Perhaps when I start needing replacement surgery they won't think I'm just whining.
- —Guest bigcocoapuff
- I had arthritis since babyhood, but was only diagnosed at the age of 12. To tell the truth the diagnosis was a big relief to me and my mother. My earliest memories of my social interaction with my peers or siblings still haunts me, I remember the intense pain when someone bumped into me. I was bullied and physically forced to participate in games by my peers and younger sibs. My mother is a nurse so she knew something was wrong, but I could not express what was wrong (since the pain was constant and I never knew that everybody did not feel this way) but the doctors told her I had underdeveloped muscles. When I was diaganosed and started medication it felt like my life started, the feeling was amazing, before that I was never without pain. My father took the news the hardest, but tried to be supportive. My siblings were shocked and felt guilty for the pain they caused. But they still sometimes think of me as lazy. My mother supported and believed in me. I'm 20 and still struggle some days.
- —Guest L20
UNCONCERNED APART FROM ONE SISTER
- My family members were unconcerned as they did not understand what it was all about. I explained to them and that's when they started supporting me. For my sister, she understood the diseases and was very supportive. As a result, I managed to accept though sometimes I cry when I think of my future -- and my family members have accepted me the way I am.
- —Guest Destine Zambia
- I was 3 yrs old when I was diagnosed with juvenile RA from my hips down. During my entire life, when in pain, my classmates, teachers and other adults always thought that I was lying. Kids are cruel, and especially don't understand how the pain can radiate and even change legs without notice. As a teen, some people would notice a limp in my gait, even though I didn't notice. Now that I'm closing in on 40, people suddenly understand and believe. I've grown up very untrusting of people unfortunately. Always aware that they may be searching for another way to torment. I've never known life without arthritis, and was even told that I'd grow out of it. Not the case. But I am resiliant and strong, and a heck of alot more empathetic towards others, at an earlier age, than many of my peers. I just keep thinking that one day, they'll get some arthritis too, and maybe they'll think back to the little girl who they didn't believe could have the same affliction.
- —Guest Karen Mulligan