Unsupportive family members | Arthritis Information

 

 

 

 

and *phew* ............. Your day is enough to exhaust me on a great day!!

 

I am sorry that there isn't more help for you... and much more understanding.

 

and Umm.. what does your husband do? 

 

You are far from lazy trying to take care of your kids, house, work, school etc. That is a HUGE amount to deal with on your own even without RA as others have mentioned. I'm glad your hubby is being understanding. I guess you just have to learn to ignore the comments your in laws make. Sometimes no matter how hard you try you can't make anyone see what you're going through. It's tough when you don't physically show how horrible your feeling inside and you don't have the energy to proove that to anyone. I have felt the frustration too of people just not getting it, but my fiance has been trying his hardest to understand and be supportive too. Something that may help is to bring someone that may not get it to a dr. appt with you sometime and let the dr. give the explanations. Sometimes when they hear it from someone other than yourself, especially a dr. it sinks in.

 

Sorry you've been feeling so horrible. YOU WILL start to feel better with meds, learning more about RA and time. My husband works full time and is finishing up his dissertation for his PhD. He is not home much right now as he is pulling all nighters trying to get the dissertation ready to publish and  is defending the dissertation on June 24. After that he'll be home to help around the house more. He does dishes, trash, and sweeps when he is there to do it. He unloads the dryer as it is very hard on my knees and back to squat to unload it. I think it is harder with my husband being gone so much as I don't have anyone to console me when I get frustrated because I can not open a jar, or just feel overwhelmed.  I am in same boat as you. I completely understand this frustration. People think your slacking off and just look or even say things. Something that helped me was going to the www.roadback.org site and I saw under the educational brochures... part of the web site....there was a thing lised as The anatomy of a flare. It was written by a person with RA and she describes this so perfectly as only a person with RA could know. I let me husband read it and all those others who think I make up my symptoms...
check it out. They read it and said wow... that is really what it is like?/ they were in then in awe of how much I actually do.. like you I have three kids and work and go to school...

I think that is the correct site... good luck to you.



Thanks Donna  I am fortunate in a way... my husband had a heart attack a couple years before I got RA.  He's also over 10 years older than me.  His illness (and perhaps the wisdom of time) have given him first-hand insight into feeling like crap when "you don't look sick." I am tired just reading about how much you do!  Some people understand right away, others slowly come around, and others will just never learn.  If you're not fortunate to get family in the first category, let's hope and assume they're in the second and need some help speeding up their understanding.  Showing them physical results (swelling for example) or taking someone to the doctor's appointment are good ideas.  Also, if they're open to reading about it, you could try something like the Spoon Theory (http://www.butyoudontlooksick.com/the_spoon_theory/) or a Letter to Normals (http://www.usresolve.org/A-Letter-to-Normals-from-a-Person-With-Chronic-Pain.php is one variety, there are many on the web).  If they respond better to facts and figures, here's a survey about the affects of RA on everyday life (http://arthritis.about.com/cs/ra/a/ralifealtering.htm).  And if they are more visual, simply go to the Google Image search on Rheumatoid Arthritis and I'm sure you can find plenty of scary photos of joint deformities that may get them to understand how serious this is.

 

RA is so much more difficult without understanding support around you.  I'm glad your hubby came around (although keep in mind there may be some bumps ahead as he goes through a bit of grieving over this...it can happen).  Maybe he can help with your in-laws.  In any case, it will probably take time.  Just remember that the problem is with them, not with you.

Wow! what a full day you have,  No way could I keep up with you.  You are not lazy.  Sad to say people don't understand.  People look at me and say whats wrong with you.  when I say RA. they just act like so what, every body got arthritis.....I have learned not to answer, I just give them a look like they are crazy....lol   At least it shuts them up for the time being. Please give yourself sa pat on the back for me- you are marvelous.

What does your husband say/ do when his family treats you this way?  I think you should ask him to tell them to back off.

Good grief!  You're not lazy, you're superwoman!! Linncn is right, your husband has GOT to get your in-laws off your back.  You don't deserve those snide comments and it's his job and his place to put a stop to it.  You can tell him I said so.  Send them to us, we'll kick their asses for you or at least enlighten them. Some people just don't get it. Probably won't sink in until they see some deformity and maybe not even then. I'd just say "the maid is in school and works another job 40 hours a week, I'll see if she can pencil me in." Dish it right back. One other thing to keep in mind is to not trivialize aches, pains, illnesses, depression, etc in those around you.  It's easy to tell people "you just don't understand RA" but do we really try to understand that they can and will have rough patches too?  When they say "my feet are killing me today" it is far easier to say "you don't know a THING about foot pain" as if we have a monopoly on all that is severely painful.  Other people have pain as well. And if someone says "oh I have arthritis too" when hearing of your RA, don't trivialize it because it's "just OA."  Osteoarthritis pain can bring a grown man to tears!  Instead, try to be empathetic and sympathetic, just as we would like those around us to do the same.   I have a sign hanging in my kitchen that says: You are a busy lady - definitely not lazy.   I don't know how you do all of that with three children.  You may just need to give them time to understand - and provide them some reading material (Innerglow's post) if after reading about RA, they still don't seem to be supportive, try not to let it bug you (easier said than done) and spend time with those that do understand.   It's great that your husband caught on quickly -  especially since he may need to pitch in more, if he isn't already.    "The Spoon Theory" has been used forever to describe Multiple Sclerosis. Just substitute R.A. and give to your family:

But You Don’t Look Sick….


My best friend and I were in the diner talking. As usual, it was very late and we were eating French Fries with gravy. Like normal girls our age, we spend a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spend most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me this time with a kind of start, instead of continuing the conversation. She then asked me out of the blue what it felt like to have M.S. and be sick. I was shocked, not only because she asked the random question but also, I assumed she knew all there was to know about M.S. She had come to the doctors with me, seen me getting MRI’s, she saw me stumble on sidewalks and have to sit down at a concert. She carried me out when I couldn’t walk another step, what else was there to know?

I started to ramble on about the medicines and the changes but she didn’t seem satisfied with my answers. I was a little surprised as being my roommate and friend for years; I thought she already knew the medical definition of M.S. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no healthy person can truly understand. She asked what it felt like, not physically, but what it felt like to me…having M.S.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least a stall. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a person with MS goes through every day with clarity? I could have given up and cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand? If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the “spoon theory” was born. I quickly grabbed every spoon on the table; I grabbed spoons off of the other tables. I looked her in the eyes and said, “Here you go, you have M.S.” She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked together as I shoved them into her hands. I explained that the difference between having M.S. and being healthy is having to make choices, or to think consciously about things when the rest of the world doesn’t have to. The healthy have the luxury of choice, a gift most people take for granted.

Most people start the day with an unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to take away, since most people who get M.S. feel the “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case M.S., in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time. Little did she know how serious the game would become.I asked her to count the spoons. She asked why, and I explained that the spoons represented units of energy and when you are healthy you expect to have a never-ending supply of “spoons.” But when you have M.S. and you have to plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started the game yet.
I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has M.S.



I asked her to list off her day, including the most simple tasks. As she rattled off daily chores, or just fun things to do I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said, “no, you don’t just get up. You have to crack your eyes open and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and you have to make yourself something to eat before you do anything else because you have to take your medicine and have energy for the day and if not you might as well give up on spoons for the whole day!”


I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her another spoon, just washing her hair and shaving her legs. Reaching too high or low, or having the shower water too hot and choosing to blow dry her hair would have cost more than one spoon but I didn’t want to scare her too much in the beginning. Getting dressed is worth another spoon.

I stopped her and broke down every task to show her how every detail needs to be thought about. You have to see what clothes you can physically put on, what shoes are going to be appropriate for the day’s walking requirements, if pain or spacticity is a problem, buttons are out. If I have bruising from my medication, long sleeves might be in order. You cannot simply throw clothes on when you have M.S. — it’s just not that easy.

I think she started to understand when she theoretically didn’t even get to work yet and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons” but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who has M.S. lives with the looming thought that tomorrow may be the day that a fever comes, or an infection, or any number of things that could prove disabling. So you do not want to run low on “spoons”, because you never know when you truly will need them.


I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of the real day for me. We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing on her computer for too long. She was forced to make choices and to think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.


When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had two spoons left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out to dinner, she might be too tired to drive home safely without having blurred vision or forgetting to turn her lights on. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think maybe finally someone understood me a little bit. She had tears in her eyes and asked quietly, “Christine, how do you do it? Do you really do this everyday?” I answered that some days were worse than others , some days I have more spoons than most. But I can never make it go away and I can’t ever for a minute forget about it, I always have to think about it. I handed her a spoon I had been holding on reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve, you need to always be prepared.”


It’s hard, the hardest thing I ever had to learn is to slow down, and not to do everything. I fight this very day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel the frustration. I wanted her to understand that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather and my own body before I can attack any one thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between having a chronic illness and being healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count my “spoons.”



After we were emotional and talked about this for a while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug and we walked out of the diner. I had one spoon in my hand and I said, “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste every day? I don’t have room to waste spoons and I choose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they look at their own life a little differently. I think it isn’t just good for understanding M.S., but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the words, every time I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons.”       


But then again, do "normals" EVER get it?                                                 
There is a fundamental flaw with that explanation:

"Most people start the day with an unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects their actions."

Sorry, I don't buy that.  I don't know anyone with an unlimited amount of possibilities and energy.  Granted, they may have more energy and ability, but it's not unlimited.  To suggest otherwise is to deny their struggles.  Look at our own families.  Many people here are unable to do as much as they were before RA - whether that means working a full-time job, handling certain chores around the house, even being able to fully participate in the "fun" stuff.  We depend on our families to pick up the slack.  They do not have an unlimited reserve - it is hard on them as well.

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