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my family thinks i am faking or something :( venting
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bettyboop71 posted:
I have recently been diagnosed w RA & connective tissue disease. I went to a local rheumy for my issues. I have so much pain & swelling on a daily basis that I do not complain about I just take otc pain meds that usually does not touch the pain but mayb if I am lucky will dull it to a low roar. I am going to the university clinics for treatment bcause of insurance issues that they will no longer cover the rheumy that I have been seeing locally. I am on prednisone, volterin, plaquenil, tart cherry caps, turmeric caps, vit D. the prob is that my family acts like there is nothing wrong w me & I am making it all up. how do you fake swelling let alone the pain? I snap, crackle & pop in my joints all the time but my family acts like they do not hear the noises. I asked my dad to drive me the 200 mi round trip to the university clinics for an extra ear. I am a single mom that takes care of everyone (including an autistic daughter). if I am having one of those days where I am having a lot of pain or very low energy I tend to sleep. I get told that I am lazy & I need to get up & quit being so lazy. this morning I was talking about making notes for when I do see the new docs so that I can tell them all of my symptoms my dad said what symptoms & I mentioned a few things that I have been experiencing & he acted like I was crazy. this is not the 1st time I have gotten that reaction, just bcause I look healthy at the moment that does not mean I do not have pain & other issues going on. I can be limping around in agony (since my feet are affected) my hands & shoulders are in constant pain & people ask what is my prob.
my mom has osteoarthritis & she does not do anything but sit on her behind on the computer (I clean up, cook, basically everything around the house but mow the yard & take out the trash). my mom will not even get a cup of coffee for herself. I take care of 2 elderly ladies which is my job at this time. so I take care of an 82 yr old, a 89 yr old, a 62 yr old (my mom), my autistic daughter, & a 62 yr old man (my dad that works & takes care of himself but cooking laundry & cleaning of any type that I do). my dad is a great help w my daughter at times when I am really down. also we have an online business that I have been trying to get my mom to help w since there are days that I can not type since the pain in my hands is so bad but she wants nothing to do w it since it is not playing games or on fb or buying stuff off of ebay. I have tried get her to let me show her what to do but she says that she doesn't want to know learn. that is another area where I get the lazy name since I can not type & get things done for the online business.
my dad thinks that having surgery will cure all of my probs. lol! how this will help I have no idea. my mom that has the osteoarthritis also acts like there is nothing wrong w me. she acts like she is dying when she has to cook (or what ever) unless it has to do w the internet.
what can I do to get my family to understand what is going on w me? I am having my dad go into see the docs w me when I see the new docs so that mayb he can get the big pict.
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DeniseB16 responded:
You should not worry about what others think especially family they are the worse with the criticism. you must get your mind right to battle this disease. once you stop reacting to them they will chill out. Keep your head up,
 
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nmacky responded:
I sympathize totally with you. I experienced the same attitudes from some of my family and most of my coworkers. I learned that trying to convince them about my condition was pointless.

I don't believe they were deliberately being unkind. It is difficult to understand such diseases when there are (at first) no clear symptoms. When my fingers began "warping" best definition I can come up with people started to realize the truth. Then I had a different reaction from some, disgust, concern about the possibility of contagion and so forth. Now I can laugh about the drama (sort of) but at the time it presented itself there was nothing at all to be amused about.

I had worked for the company for over 20 years in a front desk position, but once my symptoms became evident I was transferred to a lesser public area. It hurt, but it also made me realize what it must be like for people who live with disfigurement of all kinds. Something I never seriously thought about before. In a strange way, I truly believe RA has made me a better person spiritually and humanely. "Stuff" is no longer important to me and neither are the negative attitudes of some people. I am grateful everytime I overcome some small challenge like making it up the stairs without having to stop and rest.

I do get depressed sometimes and feel sorry for myself but for the most part I try to accept my diagnosis as a learning tool. How long I can do that is anyone's guess, but I am for now coping. And you obviously will also, because it is very apparent that you are an exceptionally capable person.

I believe eventually you will realize that what matters is that you take time for yourself no matter how much someone else complains. Try not to feel guilty about not being able to do it all. None of us can accomplish that, all we can do is our best and if that isn't good enough for those around us..too bad!

I also found out that many of the people who thought I was just a "crybaby" were actually afraid. Afraid that my changing of life ws going to affect theirs in negative way. Afraid that they wouldn't know how to interact with me. Afraid that it might happen to them, and other such fears. That, I believe is what is/was behind most of the criticism.

Take care, get lots of rest even if it means someone gets upset and remember you are not alone.

Blessings

Nikki
 
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bettyboop71 replied to nmacky's response:
thank you for the encouragement. you sound like you have just the right attitude. i can not believe that there are family members in my family that are so inconsiderate and selfish to think that i would make something so painful & terrible up. also sounds like you have been though it all. i need to take your advise. also people in my house are going to learn that i will need more help as the disease gets worse & they will have to get off their butts & help out instead of making me do it all & more.
thanx for the advise & the support
good luck w ur disease & blessings back to you
Lori
 
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nmacky replied to bettyboop71's response:
I believe I learned a lot about people and how illness of someone they know or love especially affects them when my husband was diagnosed with early onset of Alzheimer's he was only 52. Two years after diagnosis he had to be placed in a care facility due to his being physically violent. Two years fter that he passed away from complications of the disease.

Friends, family, neighbors all sort of disappeared. At first I was really angry, then very hurt, but as I learned more I realized they just didn't know what to do. Some of them were scared, many of them felt guilty that their life was "normal" whatever that might be. That being the case when my RA worsened I was not all that surprised by the reaction from some of them.To be realistic, IMO, any serious disease is scary and makes you worry about your own health and those around you.

Anyway, I know you'll get through this, and I truly believe once you family accepts the fact that you have a genuine, dibilitating illness they will become more empathetic and helpful. They just need time to get used to the way their lives are going to have to change just as yours will.

I don't think there are any rules about not posting email contact so here's mine in case you need to throw a hissy fit I sure do now and then.

Take care

Nikki...nmacky83@aol.com
 
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bettyboop71 replied to nmacky's response:
thank you & sorry to hear about your husband. it is good to know that there are people who are going through similar situations and there are people out there whom will listen when venting is needed. I will save your email and send you mine also. even though I am new to RA I have dealt with a lot of other issues having an autistic daughter and taking care of elderly people.
thanks again,
Lori
 
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LadyNerilka responded:
I don't have time to write a full response now but I wanted to give you the link to this video.

http://video.healthination.com/drugs/rheumatoid-arthritis.html

After my family watched it, they finally realized this is real, and changed their view of me.
 
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bettyboop71 replied to LadyNerilka's response:
thank you for the info. I will let my family watch this.
 
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ruthdave91474 replied to nmacky's response:
I also believe that adult children can be in denial. I have been accused of wanting attention. It is so easy to get attention with humor, if I want it. I was diagnosed 6 yrs. ago and I am only starting to get it now. I really do have R.A. Thank God for a husband who reminds me
 
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dominostreet replied to bettyboop71's response:
It seems to me your family does not want to believe you, not that they don't believe you. It would really stir the pot if they had to change their codependent lifestyle. Much easier to remain in opposition.
 
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domino1985 responded:
Hello, I know that I'm responding to a year old message, but I've just recently discovered that I (99% sure) have Sjogren's Syndrome which can take 4-7 years to actually diagnose. I found your post by looking for anything online talking about the same issues I've been dealing with. First I want to say that I'm sorry for what you're dealing with and I pray that this last year has been better for you. I hope that your family has been better about things. I hope they'll be able to stop working or get some assistance so you can work part time. I'm learning medical coding right now to get away from physical labor which is what I've been doing since I was 14. I'm 28 now, and just developed my symptoms over the last 8 months. I've found the same problem with my family, thinking I'm just being lazy. I've been waiting on my dad hand and foot since I can remember even as a kid. He's always worked but wants to do nothing for himself when he's home. I've still been doing this since I got sick, so I understand taking care of a parent who though obese, in his 50s, and with type 2 diabetes, is able to do most things for himself and just chooses not to. He and my sister act the same way, as if I'm not really sick. They wine and cry every time they have a cold, or a little cut, so to them if you're not whining all day about it it's not really painful. I've never been one to whine, I used to come home with cuts, bruises, and tendinitis all of the time from the work I did, but never complained. So now being constantly in one kind of pain or another if not having pain all over, ofc I'm not complaining about it all day but that makes it no less real. I stayed this entire time to help them finally buy a house. I've been looking to move out every year since I was 18, but he alwasy begs me to stay and tries to guilt me into it. Anyway that's another story. The point is that I've always helped them in anyway that was needed. Dad out of work for 6 months two different times for injuries, and I had to do literally everything for him at those times. I supported them through 2 and a half years of both being out of work. With all that I've done, never needing any help until now, and they both act like I'm faking or it's in my mind and I'm not really as sick, I'm being lazy. I don't want them to help me or anything, I'm just tired of having to be there for them while I'm the sickest one by far. Sorry to tell my story when I'm supposed to be replying to yours but reading your story just really related to me. Again I pray that your situation has improved. God Bless!


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