Encouragement: with a Little Help from My Friends
Don’t you want me to help you with that? No. I want to be able to do it myself.
I can do that for you. I know you can, I wish I could.
Is there anything I can do? No, I want to feel like I can do something.
Do you have any problem asking for help? Or accepting help? I only have two problems with it:
1) Accepting Help:
I don’t want to be the sick friend. I’d rather be the person who helps sick friends.
2) Asking for help:
Few people are willing to help. I’m afraid I ask the same people over & over, usually my kids.
One more kind of help: Encouragement
There’s one kind of help that’s easy to accept and can transform a situation: Encouragement. There is never too much of it. And I’ve never said, “No thanks, I’d rather encourage myself.”
It’s difficult to describe the amount of encouragement I get from knowing other people with RA. Just knowing that they are going through the same things helps me to hang on. It helps me smile and sigh and accept my situation as “normal” for someone with RA.
By the way, when it comes to encouragement, it’s still a two way street. Sometimes, I still get to be the one who helps a friend. I might not always be able to make soup any more, but I can encourage.
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23 thoughts on “Encouragement: with a Little Help from My Friends”
My wonderful husband trys to help, but is more offensive than anything. I don’t like to ask for help, but more than that I do not like to be told I can’t do things 🙁 I might be sick, but I don’t like to be reminded that I’m not able to do them. I like to dream, and wish that some day I’ll be the one who gets to climb the rock mountain with my crippled fingers, or hike to the top of that same mountain without any knee pain (or the help of a pain killer). Someday, I believe I will be able to do what I want, even if I am just dreaming :)Just a little encouragement is all we need.
Good for you Megan. I still keep those dreams too. Every time I see a bicycle, I think “someday I’ll ride.” 🙂
I learned several years ago, following a serious car crash, that I had difficulty asking and receiving help. After much dialogue with myself, I have admitted my limitations and freely ask and receive help (which is always more difficult than offering to help). As I grow older, more are willing to help (guess because I look older)so I must now work on helping others. But I always remember to ask those receiving my assistance, whether they want it.
I ran into a problem, last year and again yesterday.
My husband has a VERY visible disability. We have a neighbor that I’ve known for close to 30 years. She has a habit of presenting herself as a ‘giver’ someone with a ‘servant’ attitude. She’s taken upon herself to mow our lawn.
Because of my husbands degeneration due to the polio he had at age 3 .. there isn’t much he can do but he CAN mow the lawn with our tractor/mower. It makes him feel productive and like he’s participating in the family dynamics in more than an emotional way. (he also handles the financing). It makes him feel alive, productive, participatory and valued.
My neighbor keeps coming over to mow the lawn. I went over to her house yesterday and asked her, again, to not do so. It’s important for my husband to do it. She said “oh, but *I WANT* to do it”
NO! HE NEEDS to do it.
“oh! but it pains *me* to watch him do it”
Tough! get off my property (did not say that part, wanted to, and may need to)
Please stop. It is our property and I must insist that you stop.
I was livid … between the 6 or 7 go rounds last year with her over this … she can’t SEE my disability and therefore it doesn’t matter. (not that she’s one I’d let help me, I don’t quite trust her motivations)
How aggravating! Both problems could be solved by her taking your words at face value. Why is it people insist on believing what they THINK they see, not what we tell them is real?
Not sure how many times I’ve been told by my Wife “I can do that For you” to which my response is “Please let me , I want to feel useful” I can not explain how important it is to me To feel useful. No matter how small the task is the sense of being needed and important (being able to provide) still to these family helps with my mental well being. Which i believe is so important when dealing with this disease. I know I’ve said this before the list of things i use to be able to do is very long. Being allowed to do what I still can is extremely important.
As for asking for help that is something I really need to work on. I know my limitations I just not ready to except them yet, its that whole Refuse to lose attitude. I am getting better at recognizing my limits just have to work on excepting them….
This is so true! It is always wonderful and gratifying for me to be able to help others when I can.
As an independent, seemingly successful person, perhaps the single most frustrating part of having a chronic illness (for me it is Ehlers-Danlos, also a connective tissue disorder that can not be cured and causes both pain, failure of ADL functioning, and hazards of doing regular ADL’s…because “easy tasks” can lead to tears anywhere in the body requiring surgery or leading to more loss of function) is the asking for help.
I don’t want to ask for help. I want to do things myself. I don’t want to be someone who accepts help humbly.
Your point two is also well taken: I keep charts in my head and on paper of who I have asked for what help when. People are often graciously willing to help a sick friend who is temporarily sick and getting better. People are very afraid to start to help people who will not get better, because there is a bottomless pit…and so along with the other issues that go with asking for help, keeping score is another significant issue.
In the continual effort to not look sick, complain about pain or lack of ability, and the fact of what I can accomplish (including starting another company) despite my challenges…people are less likely to “get” that I just can not wash a dish.
There is a humiliation (whether given by anyone or just internalized) that I, who can and should be able to do anything, can not do simple tasks. And another component is that with that, there becomes tenseness in, say, having to ask for the same item more than once…”I would like a cup of water.” People forget, they aren’t thirsty. Then if I have to ask for a cup of water again, the frustration and anger at the illness, at my body, at whatever, comes up….but I just want a cup of water, and no, I can’t get up and get one.
In terms of encouragement, I will say that despite my disease, I am successfully launching a global company. In fact, in many ways it is because of my disease. The area is, naturally, in making the world better for healthcare for patients and physicians. I carefully selected what company I would start next keeping in full mind what I can and can’t do, and what I could or may not face, and therefore structuring everything so that it would work within the confines of my illness, and continue to thrive regardless of what my illness brings.
I may not be able to wash a dish or always get myself a cup of water, but I can write and inspire people, build a global team (often from my bed…the beauty of virtual business now!), and be able to pay forward to other patients (and the healthcare professionals struggling to provide good care in a world that makes it more and more difficult.)
I will say, interestingly, that the times in my life when I can pay for full-time, live-in help and was paying someone to “ask for help” were not nearly as difficult as when I had to ask my son to take out the garbage again. I think it’s of interesting to note, that there is no shame in asking and receiving help when there seems to be a fair trade (in money for example) of help.
On a last note, in addition to running multiple companies, I have also been raising four beautiful children. My dishes might not always be done.. but there is joy and promise everywhere!
Wow! I owe a dear friend a bigger thank-you than I realized. I have had the same once a month euchre partner for 10 years. Somewhere early in the progress of this disease she noticed that if my hands were too swollen to wear my wedding ring, that I probably couldn’t shuffle or deal the cards. Now, its become a no embarrassment silent signal. She just looks and jumps in when it looks like I could use a hand… never a word spoken. Guess I better learn to say thanks!
I feel like every post you make gives me such relief. To read that someone else is thinking/feeling the things I do makes me feel so much less alone. I want so much to be the person I used to be, the person who was the “I have it all under control” independent woman. I know that the people who help me don’t mind doing it. They want to help me but I don’t think they always know just how sad I feel that I need that help.
I’m tearing up reading the post and replies. Both happy and sad tears as I realize more and more that I’m not alone with my disease. That feeling useless, overwhelmingly tired, inept at some things and just like utter crap is typical with diseases such as ours.
(I was diagnosed with JRA 25 years ago; osteo around 12 years ago. Went 10 years with no flare-ups and am now in month 2 of first flare up–both knees)
One would think that having had this disease for over half of my life I would be “used to it” by now. This flare-up slapped me in the face though. I’d forgotten the multitude of issues that go along with the physical pain.
And Ali said exactly what I’ve been feeling–“I want so much to be the person I used to be….” and how it makes her sad to need the help.
Here’s to better days ahead….but today I’m not holding my breath.
Thanks everyone for making me realize I’m not alone.
I feel the same way Kelly. I don’t ask for help because I don’t drag my friends into doing my responsibilities. I had never really thought about it much, just assumed it was a guy thing I was experiencing. We are supposed to be able to do anything you know.
Since being diagnosed 8 years ago, I have only let someone mow my yard one time (I paid him for it even though he didn’t want the money), that was 4 days after I had been in the ER for heat exhaustion and they thought my kidneys were trying to shut down.
Great post as always. Thanks for everything you do for us.
I’m not a guy, but I was used to being in charge of everything & taking care of everybody. Some of us are just born “helpERs” and it’s hard to exchange roles, I guess. Best if we can do both of course – give and take.
I always prided myself on being a very independent woman, I could do a lot of things that a man could do and still tried for a long time post-diagnosis as I didn’t want to ever grasp that “I can’t do that”. I worked a big box home improvement warehouse until about 7 years ago & just could no longer do the same things without MAJOR repercussions and went on short term disability through the company 2 separate times. I still had a difficult time asking a man to help me. I could always change a tire, ride bikes (I so miss dirtbikes!), put things together–you name it I would tackle it. Then about 7 years ago (I have had RA for around 15 years, but it has majorly progressed over the latter years) I accepted that I could no longer do that type of work and tried a few different things, but the progression just made the pain and fatigue unbearable to commit to any employment and thus, I am a stay at home wife. 🙁
I will now ask my husband to help me and he will often offer when he notices me wince in pain or any other of the many indicators that I am having a difficult time with a task, but I still try to do household work and often can, just had to learn to pace myself and stretch the work out over days if necessary. As for moving furniture, painting, or doing any of the myriad of things that I once relished doing, I have to say “I just can’t”! Sometimes I just have to ask for a little help and there is nothing wrong with that!
Oh boy, #2 is so much exactly how I feel – If I keep asking the same one or two people for the (immense amount of) help I need, won’t they, at some point, just get sick of it? I have to worry as much about burning them out (not just emotionally, but physically, too) as I do about how to get the help I need. Great post, really.
Well having been about as independent as anyone could be for the majority of my life, having to ask for help has not come easy! Losing my dad to cancer when I was 11, I quickly took on his role in the family from chopping firewood to changing plugs on appliances as I was the only one in my family who could. I’m an only child too. I left home to start my nursing career at 18 (in the UK) and my mum moved to Australia when I was 19 – so independence was my middle name. My grandparents were elderly and so I assisted in decisions for them as they needed. Today I’m lucky if I can stand long enough to make a sandwich and even then – my latest trick is dropping things including utensils, food and cups etc. So when my mobility is not good (particularly morning and evenings) – it cuts me and sometimes literally.
My career has seen me responsible for 100s of staff and residents for many years and I loved every minute. Fast forward to now and it seems week to week there’s something else that I struggle with.
Yes I’m very fortunate to have supportive people in my life and I thank God for them every single day. My parents themselves have physical limitations and I’m used to ‘doing’ for them. I am also very aware that it’s the same person I ask on the majority of days – my best friend and flatmate. Coincidentally we made a decision some 10+ years ago after she had a car accident which left her unable to work and perform daily care needs for quite some time, that we would buy a house together and support each other. I loved my job and she struggled to accept her limitations. After raising two boys on her own (they are now in their 30s with their own family) after her husband left her, she too was independence personified. When she couldn’t work, she struggled to find her identity, realising that she had viewed herself as someone’s wife, mother and later defined herself by her career. Unable to work we agreed she could manage to potter around the house doing chores as she was able, me doing the heavier jobs and given that I particularly loved my work, it was as ideal as it could be given the situation.
So RA visits me and I find my ability to work disappear and find that I too identified myself by the work I did. Looking back I realise just how much I used to do – but today that has changed. Some days it’s easier to accept than others. My friend encourages me and I her – we definitely walk that two way street together. How fortunate am I to have such a friend, yet it still worries me how much I have to rely on her, yet she does it gladly and if I think I can – she lets me.
But yesterday, I realised how tenuous my acceptance and self confidence is. My friend (who I am so blessed to have in my life) sees me struggle daily, was asked by her son who had been for a visit with his family what was wrong with me (medically I should add). She explained my current limitations and deterioration with RA assuming he was expressing concern. She also mentioned that when she next visited him next, if I didn’t go along, that she would only go for a couple of days at most. His response was ‘So you basically run round day and night picking up after her – you should just move away from her and leave her to ‘deal with it’.
She answered him with honesty and integrity – basically saying that that was not going to happen. Last night and today she is embarrassed and struggling with the attitude he displayed (certainly not one she had taught him).
I in turn (apart from being distressed and disappointed) having thought that I was considered ‘part of the family’ realised just how much RA has taken from me and has also left me wondering…
But I’ll be ok – I might just start polishing that bike and cleaning off my hockey gear – just so it’s ready for me when I get just that little bit better
Kath – you’re too far away. But I’m so glad we can talk this way anyway. I hate those moments when it’s just really obvious what RA is stealing from us & how helpless we are to fix it. I say the same thing about a bicycle. Sometimes, at the store, I almost buy one.
Once upon a time, I could just try harder or stay up later & determination was always the answer. So many of us were such high-achievers. None of my own children have ever said anything like your friend’s son, but I get the same kind of feelings: I know they get tired of all of it. How frustrating it is that I can’t make people see what is inside me when I’m so held back by this RA? We still get defined by what we see and do, not by the imagining of what we would do or did in the past –
Your friend must feel disappointed in her son, but we cannot control our children’s reactions. It’s not her fault of course.
Kelly I wholeheartedly agree with you said. I actually did buy a bicycle shortly after I was diagnosed – my rationale was ‘well your feet, back and knees are too painful to walk far, but just think how far you could cycle’ but I proved that theory incorrect very quickly. I had to try a second time of course with the same result.
I so understand Kelly how heartbreaking it is not being able to show who we really are and having to rely on those that we are closest to.
I can’t adequately express how blessed I feel to have my friend in my life particularly when I read about the lack of support others endure. She is terribly disappointed in her son and whilst I know she bears no fault, I’m not so sure that she accepts that herself right now. The effects of RA are so far reaching for us and our loved ones.
I am just an outsider who was reading your stories. I never understood how serious and life changing RA is. Reading this makes me question if myself.
I always make a point to help someone out, mow the lawn, carry bags, or help shovelling snow for a lot of my neibors who live with RA. It was never my intention to try and interfere. From now on I am going to communicate more, if there RA but I can understand the frustration.
Thank you for opening my eyes to relize sometimes you can hurt people more then you help. Having thoses activities for my neigbors to accomplish is something that they would want to do. From now on, I am not going to ask them if they need help.
They know I will be more then willing to, but if they need me I will wait for them.
Its funny because I never thought of RA as a serious illness but the more I read I can see that it is!
All of you are very strong and I wish everyone the best. I wanted to let you know how much you have influenced me for the beeter.
encouragement is such a big issue. it is important that we all get encouragement from each other. i have already had a few friends give up on our friendships, because i never go anywhere or do anything. the average person with out RA doesnt have any idea what we go thru on a daily basis. the farther i go into this disease process, the more i realize the inability of others to respect or acknowledge our limitations.
@14: Thanks for your sentiments. What would actually be ideal is to offer “let me know if you need any help” or something similar that provides a gracious opening while allowing freedom of choice for the intended beneficiary.
somebody has to offer first. that is rare for some of us. friends are few and far between, especially when you become the “sick” one.
just venting i guess.
Wow, great posts. We are forced to give up so much, maybe we get insight and wisdom in exchange. Not many children will regret helping their parents and family through tough times. I have a son with mild autism now , severe when he was very young, there are two male teachers in my immediate family and a close friend the same age who teach spec Ed autism…only because they were exposed at a young age and ARE NOT AFRAID. The hardest lesson to teach …be brave be fearless, did I mention they are in the inner city of Philly , where they are desperately needed. If you live long enough it does start to make sense. And I would never have computer access and unconditional love if it weren’t for my son. He also told my Father on his deathbed ,that it was an honor to be your grandson…my very large family was stunned, for all we said and did for my Dad ,his simple statement was perfectly eloquent. I think we are like that too. We don’t realize how we affect our families, and the world in a positive way, even on a bad day.
Great post! I am a very headstrong woman, and I have had to work hard over the years to force myself to ask for help. It’s one of the biggest difficulties of having RA. One thing I’m very grateful for is that my husband does things to help me without my even having to ask. I appreciate that so much, because it takes a lot for me TO ask. I have gotten better over the years and don’t get as defensive or frustrated. But the desire to still do everything on my own is still there.