Independent, Dependent or... Helpless?

By Dianne Scott

3 min read

Recently, someone used the word ‘helpless’ when referring to me. I was taken aback. I actually had a ‘funny’ feeling about being termed or viewed as such. I often note that MS has heavily impacted my independence, but I have never associated my situation with helplessness. It prompted me to do a bit of research and self-reflection on the state of my situation, and the message I’m sending relative to it. Is being helpless the ‘vibe’ I'm giving subconsciously?

The word brought me pause

'Independence' is taking care of oneself. On the other hand, 'dependent' means to be reliant on someone or something, and then there is 'helpless,' which is described as being unable to help oneself, weak or dependent, deprived of strength or power, incapacitated, and the Cambridge Dictionary even goes on to say “unable to do anything to help yourself or anyone else…” I suppose I’ve always known what these words mean, but didn't understand until I actually read the dictionary why being coined as helpless brought me pause...

That is not my ideal self

'Helplessness,' by definition, seems almost pitiful, sad even. There's also a term, 'learned helplessness,' which refers to the feeling one adopts when incapable of accomplishing tasks and has little or no control of the environment. For example, if I perform poorly on tests, I’d begin to feel that nothing I do will have any effect on my performance. I am not any of that. That is not my ideal self or who I want to be. That is not my self-image and definitely not the image I want to project, the vibe I wish to give.

I don't feel helpless

Unfortunately, I live with the reality that MS has hijacked the fine and gross motor skills necessary to do even the smallest of tasks without a great amount of effort and without partial to total assistance. However, I don't see myself as or feel helpless. I don’t see myself as or feel as though I am powerless or without strength. I don't see myself as or feel incapacitated, and I certainly don't see myself as or feel that I cannot do anything to help myself or anyone else. Nor, even through the challenges of life with or without a chronic disease, that I have learned to be helpless due to not doing some things well and resigned myself to thinking that that's it for me.

I concentrate on all that I can do

I am no longer independent in many ways. It is necessary for me to depend on a wheelchair or walker to ambulate. It is necessary to depend on someone to help me in and out of my vehicle. It is necessary for me to depend on someone to get me a meal or sometimes cut my food. I could go on, but to focus on all of that is for one that has a pessimistic attributional style. I am the opposite. I am an optimist. I choose to view my life with hope - despite MS and it's unpredictability. I concentrate on all that I can do, what ability I still have, do what I can do when I can do it, etc. Amongst other things, I have a voice - written and verbally - to bring awareness to living with MS and other timely topics. I can be an inspiration to others going through trials. And for physical assistance, I can solicit my network of friends, family and medical insurance.

My choice, my ideal self, my vibe is and will remain to not wither away helplessly, despite the need to be dependent on others and assistive devices for my daily routine. All is not lost and I am not… and refuse to view myself as... helpless.

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dhortho1 Member
Diane, may I ask what type of MS you have been diagnosed with? I enjoy and appreciate your posts as I am trying to learn and understand what a friend of mine who has MS is going through. She has gone “dark” and stopped communicating which she says she does often. I have learned a lot about the science of MS but where I have mostly advanced my understanding is through essays such as yourself. Thank you, David
1. poppa57 Member
 Well I start my first Ocrevus treatment this Monday. I am cautiously optimistic. I have searched the web high & low and have yet to find any negative about it. So if anyone knows of any negative reviews about it please let me know. I have had PPMS since around 2005. I was not Formally diagnosed until early 2016. In that span of time I have gradually lost the ability to walk any farther than around the house. The Dr that prescribed Ocrevus said that his goal was to have me up an ad walking around. So I am hopeful. I also receive monthly infusions of steroids that seem to help, not to mention increase my apatite but that is a good thing. I had my first treatment and it went off without any complications. I was in a hospital room I was hooked up to an IV, I was given Tylenol then Benidril through the IV. Evidently itching is a common side effect I did not experience. So I sat in bed, watched tv, I was even provided lunch. When the infusion was finished I had to wait for 1 hour of observation and viola I was done. Three days after I had leg weakness in the morning. This went away towards the afternoon. Next day same thing but it did not go away. I am getting an electric wheelchair soon so I am glad for that but I can still walk around my house and do some chores on my good days. But I can go out around and go to the grocery store and take a strole around the neighbor hood by myself. I have read a lot about people with PPMS having others treat them like they “need “ fixing or like they need help with everything and the more I read the more thankful my family. They have learned what I need help with and what I don’t. Of course I keep them updated so they know. I also not only have ms but I also have, COPD, a stent in one artery and the others have a 40% blocked, and a heart mummer, osteoarthritis in all my joints, so I am still trying to figure out what I can do that is not detrimental as far as exercise and or therapy. Still haven’t found that balance. So I go along doing what my body tells me I can on my good and bad days and trying to figure out what is bad in the long run. I am finding my new “normal”. While I don’t feel helpless I do need help with some things and I have been one that preferred to do it my self, an d not to rely on others. For the last 7 years I have had to continue to revise that. And it doesn't help that I forget things like words and phrases that I have used all my life. On some days I can’t read or write a full sentence, so it some times makes chuckle when I hear or read about some one having a self pity party I can’t help but tell them my story. I am a Christian so that helps me. don’t get me wrong I have days that I just sit and “mope” but I don’t get too bad it has been a real effort to stave off the blues as My Brothers youngest son committed suicide at the age of 35 and 3 months later my brother did. I must say am not nor have I ever been a proponent of suicide. In my view creates the same feelings in loved ones, just creates more suicide or at least suicidal feelings. So even before my brother and his son I have people that I talk to help me from causing those feelings to my loved ones, I have at the very least to just look at my grandchildren to keep me from doing that. I mean that Christianity works for me, others should find what helps and works for them. So that is my story in a nutshell.
2. Dianne Scott Moderator & Contributor
 Hello <inline-mention user-id="4084581" username="poppa57"/> , You certainly have quite a bit on your plate and I appreciate you sharing your story and I applaud your courage in finding even a sliver of positivity to focus on in order to maintain your livelihood. I also commend you for admittedly having 'mope days,' but finding a way not to wallow in despair. You keep fighting and looking up ... I too am a Christian and my spirituality indeed is a plus along my journey with MS and otherwise. Thank you so much for reading my article and taking the time to leave a message sharing your story! Be encouraged, my friend! Best wishes, Dianne♡
Dianne Scott Moderator & Contributor
Hi David ( <inline-mention user-id="3978443" username="dhortho1"/> ), Thank you so much! And I have RR (Relapse Remitting) MS although at one of my last appts, my Neurologist said that he suspects I may have transitioned into Secondary Pogressive because I've not had any defined exacerbations yet I acquire new symptoms-"some which haven't even been detected on my MRI. I do hope your friend comes out of that dark place. It's definitely not advantageous to dwell there. The good thing is she has you.. Your support is so important during her journey.. I commend you on educating yourself not only about the scientific aspect of MS, but also the perils of living with it. Best wishes (to you both), Dianne ♡
1. dhortho1 Member
 Dianne, thank you for your response. The thing is, about her "darkness", I don't know whether to occasionally send her a short message or just let it go. I don't want to be a pest and how much more "rejection" am I willing to subject myself to? We were having the best "conversation" after many years just catching up on each other's lives, careers and families and then she out of the blue went "dark" but she did say she does so often and for me to "hang in there and maybe we can have a more in depth conversation down the road". Like the flip of a switch she went from being bright, sunny and engaged to dark, angry and even arrogant. It was if it wasn't even the same sweet person. I've never seen anything quite like this. It wasn't normal by anyone's measure. I and others have reread countless times our LinkedIn posts to see if there was anything I said that could have triggered this response -- there is nothing. It's been seven months now and no word. During that time I have sent her a very brief best wishes for Easter and Mother's Day with no response. I'm hesitant to do anymore -- I have to protect my own psyche and dignity. Does this sound like MS? I just don't know that I can "afford" to try and reach out anymore. If you have any suggestions, I'm all ears. Dianne, thank you for "listening" to all this. Be well, David
Dianne Scott Moderator & Contributor
<inline-mention user-id="3978443" username="dhortho1"/> Hi again, David.. No problem relative to the response or listening ☺ Although I know that MS can play a role in mood, I'm reluctant to think that a 7 mth silence, based on what you've told me, and not even a perfunctory 'thank you' to periodic well wishes is the result of a bad mood. At this juncture, I'd love her from afar and perhaps when and if she's ready to be an active participant in the friendship, you can reconnect at that time. ...Just my opinion. Wishing you the best, Dianne ♡
1. dhortho1 Member
 Dianne, It hurts but I’m done with it. Some forty years ago we were very close but due to this all important thing called timing and the vagaries of life we had to go our separate ways. We had no communication until just recently and only then did I learn about her “situation” which is how she describes her MS. Don’t know the extent of her illness but I have experience with chronic, debilitating diseases watching my Mother suffer terminally with ALS. I am comforted knowing I have been a gentleman and offered my hand as a friend and supporter. I suppose it’s possible this stirred some feelings and emotions she’d rather not deal with (giving myself a lot of credit here) but what do I know — I’m just a dumb guy. I partly regret now having taken the risk of reaching out and putting myself through this but it’s who I am. If she did try to communicate I doubt I would respond so now we are “tit for tat” — not good. But that won’t happen — I know I’ll never hear from her again and she’ll not hear from me again. Thank you sweet lady, David
2. Dianne Scott Moderator & Contributor
 <inline-mention user-id="3978443" username="dhortho1"/> Sorry to hear about your mother, David. And you don't sound like a dumb guy at all, but rather a compassionate one. Don't regret acts of kindness.. Maya Angelou said "People will forget what you said, people will forget what you did, but people will never forget how you made them feel. Take care, Dianne ♡
lisap1 Member
Dear Dianne, I have recently found this excellent forum for MS, and I thoroughly enjoy reading all of your articles (and the articles of others, too). This particular topic of Independent, Dependent or Helpless hits me like a knife, actually. I was dx’d in 2005 after my 40th birthday; after having worked about ten years for a Fortune 500 company starting at the age of 18; after I bought my first house by 21 (along with my husband); after I completed a degree while 9 mos pregnant; and after I opened up a state licensed daycare to be able to care for my daughter and others (and later, my son, too) in my home. Life goes on before MS, and I follow my husband and support his career. Until that one day I was dx’d with MS and was temporarily paralyzed on one side. You know the story after that... most of us encounter so many symptoms and eventually find a way to deal with our new selves post diagnosis. My story is the same. I, like you, never dwell on my new self... I embrace it and try to be the best person I can, despite this diagnosis. So while outsiders find me inspirational as they watch me push myself to the limit, even when sometimes I ought not... my family has this impression that nothing is wrong with me. Couple that with a husband who can never sit down & does things faster than I ever could pre-MS, I feel like I am treated like I’m absolutely helpless. I TRY to help with everything and am usually met with, “I’ve got this!” from my family... sounds great, if the words were sincere; however, I’ve actually been TOLD that I’m “useless” & “lazy!” My husband knows better, and frankly... my kids don’t remember pre-MS me. I often find myself crushed & trying to explain a disease that’s unpredictable and hard to explain; one that I am now sorry that I didn’t complain about more often! I feel as though I’ve copped am “I’m fine” attitude, and it is now biting me in the butt! So thank you for this article, Dianne! I needed to read this from someone else experiencing judgement from others. I’m sorry that you’ve endured it, but I’m thankful that someone out there understands it. I am not 1/2 the person that I was physically 12 or more years ago; however, I am even more of a person in every other way today. Thank you for lifting me up from another moment of being judged instead of understood. ~Lisa
1. Dianne Scott Moderator & Contributor
 Hello Lisa, First of all, you're welcome and thank YOU! I appreciate you're reading my article(s) and takkng the time to share your story! I never tire of hearing how much our community has in common - not only in symptoms, but experiences. Hang in there, my friend, and be encouraged! Warmly, Dianne ♡
2. irishmar8 Member
 Lisa- I totally get this and you. Your mental spiritual energy is seemingly stronger than your physical energy. In your written word you exude independence not helplessness. Don’t lose your spirit keep writing or journaling. I feel your words and feelings are your new power. It’s your words and feelings, who are strong now. Exchange your physical power for your mental power and I hope this will ease your sense of helplessness. It is said the pen is mightier than the sword. Your pen is pretty mighty. Marianne
irishmar8 Member
Great heartfelt message. I feel that way too! We take help when we need it so we can use our energy for doing other things in our lives. We’re not helpless we just have to prioritize where our energy should and can go. I prefer mental energy overcomes physical energy more often.
1. Dianne Scott Moderator & Contributor
 Thank you, <inline-mention user-id="4044958" username="irishmar8"/> ... You definitely 'get it'. I appreciate your taking the time to share! Best, Dianne♡

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