Readers Respond: How Did Your Family React When Told You Have Arthritis?

Responses: 17

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

Annoyed

I was 15 when I was diagnosed with JIA. My friends and family have been very compassionate and understanding, but I can not tell you how many times I have been asked if the cause of my arthritis has been cracking my fingers. I just find this comment ignorant and disrespectful.

—Guest leah

The Uncaring Family

Living with RA is very isolating - the people closest to you, who you think will be compassionate are callous. Instead of being an active wife, mother and friend, I sleep 10 hrs and take an hour to get moving in the AM. While my husband is playing golf, riding bikes and skiing (like we used to do together), I’m at home on the couch alone on the weekend. My mother and sister tell me “everyone has little aches and pains” if I’ve shared how badly my joints are hurting from RA. To them, I’m not a caring daughter because I only spend a few evenings a week with my mother in assisted living. There is no compassion for the energy it takes for me to make it to work full time, take care of teenagers and spend time with my husband and mother. It leaves little time to take care of ME emotionally or physically! And now I’ve just been diagnosed with diabetes - great. Unfortunately, the greatest value from this web site is in reading how isolated many others feel – misery loves company.

—Guest Elizabeth95630

ra

My mother told me if I would get off my lazy a** and exercise it would go away.

—Guest daughtry

Similar story, different family

I deal with DISH, I have spurs on each of my thoracic vertabrae, I am 50 and have dealt with it for several years now. At first my wife thought I was faking and decided the best thing to do was ignore me... She told her friends and family how lazy I was and it hurt me deeply. I would have to lay down sometimes 3 or 4 times a day. I would take the daily arthritis med and sometimes I couldn't tell I had taken anything. Some days are good and some are not. Now that I am older and also my wife and kids, they seem a little more tolerant of the OLD man, my wife joins me when I lay down to rest my back now, the kids do things that I can't possibly do with my back. Life has gotten a little easier and better... the main thing I had to remember that was to take care of me.. to take my meds, watch my weight, and don't do things that I could do in my 20's. My family had developed an understanding and now I don't feel as lonely and as rejected as when I first started "failing" their expectations..

—Guest jcpc202

They just don't know

I've only told 5-7 people. My spouse thinks I'm "sick all the time".I still take care of my chldren, my older in-laws, many animals, work part time etc. I go all day and crash. He sees me and doesn't understand I'm not who I was. My friend who I thought would be considerate tells me constantly of her "high tolerance" for pain! Afterall she's had gastric bypass. I chose to tell only a few and now regreting that. Because I look normal and keep plugging on it must not be that bad.

—Guest Susieqq

Not much response

Like many of the others, I find that most people I share it with immediately launch into their arthritis stories. I thought I knew about arthritis until I was diagnosed with RA and really learned about the differences, so I guess I can't fault them. It does feel really lonely. My mother is becoming more empathetic, but the rest of my family minimizes it, so I just have learned not to talk about it.

—mcjola

biological family uncaring

My mother and my sisters kept telling people I was faking it all. When the time came for my knee replacements, they tried to talk me out of it. Saying things like they knew someone that had it done and they regretted it. Well, I told them this was my decision and believe me, it was the best thing done and wished it had been done earlier than it was. They have come around more now as they see the deformity in my hands. One sister made the comment she didn't know how bad it was until she saw my hands, but not to me. My twin had no compassion at all. But now my inlaws while living were fantastic as is my husband. My sons did things while home to help me. I had a special friend mom57intn that was a caring person and would help me also. So the support from some was rewarding and the others I didn't frett over.

—nicki54

Sad & Supportive

My husband felt very badly about my diagnosis. We have no children, so it is just the two of us. He did a lot of research on his own, which I am thankful for, because it gives him a better understanding of RA. It was his idea that I quit my job, which was very physical. I feel very fortunate that he is so supportive and that he can't do enough for me. He always asks me how I'm feeling and I usually say "fine". I hate to complain and have him feeling sorry for me and worrying. With my parents that are in their 80's, I tried not to make a big deal about it. Of course, they felt terrible, but I just tried to minimize it and tell them that my medication will keep me from getting bad. They do know what it's all about, since they have memories from friends in their past that have had RA badly. They live with us part-time and I never let on to them when I am having pain. I hate to see them worry. Paula in Connecticut

—Dogfeathers

Suportive and concerned

My husband was very supportive when I was diagnosed with RA. We have been through a lot together, but I think it was really hard on him. I know he was relieved to have answers for all the pain and hopeful that medications will help me have a less painful life. I think he also often feels frustrated that there is not more that he can do to help me. I have a really great husband, and he is always helping me in every way he can. My children I feel still do not have a full understanding of it all, there is not a lot of literature out there to help explain it to kids, they were 9 and 11 when I was diagnosed. I do get a lot of the people as Chris said that tell you about their aches and pains and their bit of arthritis here and there, I tend not to tell people about it unless I feel they need to know.

—Guest tmanny

husband's reaction

Hi My husband is unhappy, He gets angry, If he see me taking the tablets, or an afternoon rest. Not much support, struggling to cope with his attitude.

—Guest Jeena

they didn't like it

My wife has caretaker issues-she tends to be very caring and tries very hard to fix everything. It shows up in her relationship with her parents and our eldest child. As a result she often feels drained and resorts to trying to avoid caretaking at all with others. I am basically not supposed to get sick and when I do I should try not to bother her with it. The stereotypical strong male/husband. So at this point I'm not supposed to bother her with it, not supposed to talk about it, and if I can't participate in an activity well I should just stay home. What gets me really angry is they told me to lose weight and that would help but she keeps serving cakes and cookies and when we have company has to put out an opulent spread. I find myself furious with her sometimes. Ab

—absraoka

mixed

i was 21 when i was diagnosed with ankylosing spondilitis my dad didn't like accepting it of the school you just get on with it take 2 aspirin and lay on a board for 2 weeks and it might go away LOL my mum was very supportive i tend to stay in when i'm flaring up so neighbours and friends don't really see the bad bits so i guess i look ok when they do not worth trying to explain because people arn't really interested in listening to you winge abut your ailments

—keepondancing

React?

Well,I am embarrassed to say there was no reaction,I guess that is why I feel so alone and terribly sad.I have been so sick for so long.As I write this I have hopes for a new med Savella, I just got the starter pac, I am taking my first dose as I write this, I hope it helps, maybe what I'm experiencing can help someone else.please pray for me,there is so much more I need to say about what I've been going through, but I am overcome with such fatigue and confusion at this time I'll explain sometime soon. thank-you, Lisa C.

—Guest lesamari

Uninformed

There are many people who do not comprehend how painful and debilitating arthritis really can be. Although my family is very supportive of my health concerns which include other debilitating problems, I think that arthritis was taken the less seriously. And actually for me, it is the MOST painful as I suffer from widespread particularly aggressive inflammatory arthritis. They TRY to understand but nobody can walk in another person's shoes (for the most part) until they have experienced chronic pain; it has affected my life but I maintain a positive attitude and keep up with as much of a quality of life as I can. My deceased Mother was very empathetic but she too suffered greatly from arthritis conditions. Misinformation, lack of education plays a large role. People want to understand but to many arthritis is about being stiff and sore and an old peron's disease. I myself never realized how painful it can really be. Mermie

—Guest Mermie

Supportive Kind

My mother was great. She sent a regular donation to the Arthritis Foundation so I'd start receiving their magazine. Then, I started to learn. (Internet didn't exist back then.) My dad was kind. He tried to introduce me to a few people who had the condition. He also got mad and told-off a physical therapist who explained to me how crooked I'd be in ten years. My dad told him he had no business trying to predict my future, as each person's case was different. My current husband's mom, however, didn't like it that I had r.a., and was very clear about that! She's since passed away so it's not much of an issue now. My husband sometimes gets unhappy about it, but he gets unhappy about a lot of things, so I just blow it off... !!!

—LeighSwenson4

Disbelief

My Father was dying at the time, so did not tell him. My Mother could not take it in and my older siblings stuck their head in the sand and still have it there. Now 20 years later nothing has changed, except I am told I am lazy, because I need to take naps, Mother thinks I am still a teenager, superwomen and my siblings, well they all live abroad, out of sight out of mind. However, I look extemely well and healthy to outsiders, who know zero about life behind closed doors. If people ask 'How are you' I simply state 'You really do not want to know, honest!' Oh yes always get 'My Grandmother has that' and I was in my 30's when diagnosed. So I keep my head down and just keep putting one foot in front of the other, for as long as I can and do not discuss my RA, disability status, life because there is no point!

—Hermes6

Family reaction

Understanding rheumatoid arthritis (RA) is hard for people who have no experience. They hear arthritis so to them it's all the same. Most family members had to tell me how they had a bit of arthritis here or there and that you just learn to live with. They said that sometimes they may have to take something for the pain but mostly you just live with it. Others said that heck, it can't be that bad, you look fine. Chris

—bandittcj