Family, Friends & Chronic Illness | Arthritis Information

Hello, everyone,

I was wondering how you handle explaining to family and friends that you just con't do everything you used to do. Do you find that they have any understanding of the fatigue and limitations of chronic illness?

Seems like one really finds out who their friends are when he/she develops RA, severe OA, Fibromyalgia, etc. I have to say that my huband is very understanding and supportive. I don't know what I would do without him. As far as the rest of my family and friends go, I would have to say, this is not the case. Actually, some of them are have no understanding or compassion at all. They still want me to be able to function as I did before and do the things that I have always done for them. They offer no help or support at all. Is this normal?

Any ideas for handling this situation?

Thanks so much!

VTake a family member with you to your next appointment with your rheumatologist. Let the doctor know before the appointment that you hope to convince the relative that you really do have a debilitating disease. Most doctors will help convince.

Once this relative hears it from the expert, word will pass among family members.

This strategy usually works. Of course, there are some who refuse to believe it's a chronic disease with ongoing pain. You'll never convince them.

Vee,

I think the big mistake I made is to become a "Downer Don". Oh woe is me. Constantly talking about "my problem(s)". It's true that misery loves company but it's also true that company doesn't love misery. Friends and family just got sick of my sickness. Eventually I quit talking about it and of course as time and the disease progressed, everyone became more aware of just how devastating this disease is and practically everyone was amazed at my cheerful disposition even though unaturally swollen joints had turned me into an old man. They were surprised at what I could still do. Fortunately, my whining and crying did get rid of some of the "friends" I can definately live with-out. Good riddince. The cream of the crop are still right by my side.

LEV

levlarry2011-01-04 05:12:58My husband, brothers, and sisters-in law, understand because my mother had RA for many, many years. My good friends show concern and understanding. I try not to discuss it with those who have no understanding of RA. I have come to realize that I have to let people know when I am not up to doing something on a bad day. It's my health and I have to protect it. Contrary to some beliefs, I don't feel better when I "push myself" to do things (walk to much, etc.). I actually end up feeling worse with bursitis in my hips and having to get injections. Or a end up having to rest more to recover from doing too much. I just wish I could overcome the feeling of being "guilty" because sometimes I'm just not up to doing fun things that I used to willingly want to do. Lev - right on! When you "become your disease" you end up not liking yourself or others. We constantly have to fight against becoming our disease. Ask yourself: What message am I sending to friends and family? Do you try to do things? Are you exercising daily? Are you doing the things necessary not to become your disease?Thank you all for your input. I like the "need to know" concept. I like keeping things to myself. I never say anything to my coworkers. Only my immediate boss, who is also my friend, knows I have a lot of pain sometimes. I don't ever go around mopping or saying I am in a lot of pain, but sometimes I can't hide the limp or the strained expression on my face. I realize now that this is just the best I can do, and I don't owe anyone an explanation. Thank you all so much!!! VI find that most of my family understands if I am not up to doing all the things I used to do,those that don't I don't worry about.I have close friends who are very understanding and we laugh at silly things-like the Christmas lights on the bushes instead of the roof-its different but just as pretty!Some people are insensitive and you can't change that,that being said don't force yourself to be around them if they are negative,because you have enough to deal with already. Thanks, Saylav! I have finally come to that conclusion. I save my energy to enjoy the important things in life. I refuse to let insensitive people rob me of my joy.

Peace to you,
VMy Ra came on very slow, Low pain, I just had arthritis funny, Then about 2 months later I had drop feet and unable to break bread or raise a full glass of water or open or close a door. everyone pretty well knew it was bad. and didn't open thier mouth. I went from working 2 jobs to not working, Got ssi within 2 months. first try. I could not write where you could read it. RA is bad. I have very little joint damage, Mostly nerve damage RA can hit you many ways. it can effect your hole body.Rusty, how on earth did you get SSI within 2 months? I have been trying for over a year. I am still waiting on Disability to make a decision on my appeal. I don't have a job and my husband doesn't either so I cannot go to the Rheumy. Any advice? I was that down, Could not walk, write couldn't do a lot of things went in and fill papers out, got a notice in mail and check was there, I got a lot better and went back to work for a little over 2 years, my feet dropped and it took forever to get it back, about 8 months. If you ever want to work DON"T. Thats bad but if they ever get the idea you can do some thing they want you to. and I'm the type that wanted to work. Now I'm old and draw plain ss.

One thing you need is a good Doctor behind you, One that knows how to fill the papers out and wll fight, has a lot to do with the doctor, be sure and have a talk with him. On just about everyone it takes 3 trys, when you go for a hearing before judge.

I just posted this: http://thepopehome.blogspot.com/2010/11/did-you-all-give-up-on-me.html
on our family blog going through EXACTLY what you are talking about.

Its very personal and kind of strange to share on here but it tried to explain how I was feeling now and how its affected my life and I am sure several of you can relate.

Rusty how long scince you had foot drop?

I used to get it now I don't. No ryme or reason to it. I think it has been five years scince I had foot drop. I had it off and on for about four years. Glad it is on vacation.

Friends I do not have the energy. Family sorry family I love you but I am cranky these days. I guess my attitude is not the greatest. I do what I can at my own pace. It adds up to alot so people just think see she can do stuff.

Well no I really can not. The only people I get frustrated with anymore is Doctors. I expect ignorance out of others just I expect more from doctors.

I guess I am a bit strange in my arthritis also Rusty. I hate to say that I wish my RA was worse because I know that is not true. It does not take alot of swelling to do damage or to wreak havoc on a persons body and life.

So with slower onset type arthritis you get alot of doors slammed in your face. People act like your nuts sometimes. I am nuts all of the time but thats besides the point. I know my limitations and if others want to argue with me they will have to come find me sitting on my sofa. My big toe is now turned down and under the second toe. The second toe is turning a bit also. Most of the time I ware shoes and people can not see it.

I just really do not care to impress anyone or even care anymore what people think. I worked hard my entire life. I still do more for others than I do for myself. I am not even angry thats not it. Just really tired of explaining. Just really tired period nothing else I can say.

I guess explaining never got me anywhere. If I am tired I sit down it just takes less energy and I get better results from it. LOL

I must tell you I am not a very popular person with an attitude as such but it is what it is.

Really at this moment in time my sister has four little ones. She works and goes to school. I have two disabled brothers. My parents are getting older and there is just always something that needs being done. My Mother just has too much on her plate and I try to help her when I can and when I can not I try anyway.

The person I have trouble explaining things to is myself. I will wake up tomorrow and the little ones will be all grown up. I really do not want to miss out on all of that. So if I am feelling well and have free time and energy I would probably spend my time with my little ones. So by choice I do not spend alot of time with friends these days. It has little to do with RA.

I do think we are confusing to others. How could we not be. Sometimes I can walk clear across town. Some days I can barely make it to the bathroom. I have a few good months and everyone thinks I am cured me included. Honestly alot of the times when friends call I say I am busy. Babysitting or cooking a feast. Often that is even true.

If I was healthy I would have alot of really great reason to not be able to make it to a dinner party or a night out on the town. Truely I think people understand that better. Some days I am just busy because I am trying to juggle several doctors apointments around a busy life. It seems like I run into my friends in the waiting room at the doctors office or at the grociery store. Everyone at the hospital knows me. So I guess I do not get lonely.

milly2011-01-13 04:16:03

sorry, Milly for not getting back sooner.

I had drop foot twice and it left damage every time, weakness and dropped toe that is just hanging. I was put on very high dose of perdisone fist time in hospital and thur iv, second time it was 95. It lasted about 3 months each time, had to wear braces to walk, but the pred. made me feel good. it's been about 20 years, but some time my feet will go numb and they burn and hurt, I do not have balance I fall a lot. I don't walk good I don't pick up my feet high enough. and they tell me that my right foot is turning when I walk. before I had dropped foot I had a burning felt like I was on fire, no stopping it till predisone. Maybe the doctor is right I do have my share. I do have other RA problem, amd a lot of side effects.

So probably because I take prednisone more often now that my foot drop is better. I was on prednisone for two years straight at one time. Now I try not to be on it more than a month or less at a time. Well September and October I was on it almost for two months. I was off of the prednisone all of November and December until this past Monday.

My foot was no good for walking on just tripping over was all it was good for. Just limp and hanging straight down. I still keep my walking stick by the bed just to be ready if it ever comes back. That is a real disability when it happens. Kind of takes the desire out of walking around. I used to be afraid to go to the store because I was afraid the foot drop would hit and I would get stuck in the store. Guess I was younger and more concerned about walking around in public dragging my foot.

I used to have poor balance then also. I would fall on the side walk in front of the bank and people would come running to see if I was alright. My knee even once did not work. I was at home and had to call for help. The ortho called me in some prednisone and knee braces. Just it would not hold me up just flopped right out from under me. Doc said it was probably swelling coming from my spine? Thank goodness for my kid. The poor guy used to have to do all of my shopping on many occassions.

I have a hard time with this also. One problem is that every other week I drive down to San Jose to help my dad and mom. My mom at 94 years has Alzhiemer's. She was diagnosed about a year ago. I help my dad, who's 85, around the house, and he's able to get out for a few hours. Physically, they are both healthier than me. I'm going through a major flare right now and my whole body is involved. Last week when I got up in the morning I didn't see my dad in the hallway and I was grimacing with pain as I hobbled to the bathroom. He was shocked and said "What's wrong??!!" I wanted to break down and just sob but I couldn't. If he knew, then he would be afraid to call me when he needed me. I have to be strong for them and it's hard.Sorry, Miles, I know what your going thur it is not easy with RA, It is so good that you can help your mother and father be careful and don't get your self down doing to much. I try to take care of husband 78 after open heart surgery, he also has alzhiemer and it wasn't easy. you take care and try not to over do, take care of YOURSELF.

hope you have agood night sleep.rusty2011-01-16 21:49:36They tend not to believe whats going on at least in my case. Its hard to have empathy I know that for some people. But heck all you have to do is take a look at the way we walk, the way we can't do everything we did, I am sorry I am just not lazy!! I need to rest sometimes.
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