Has MS Made Me Selfish?

By Dianne Scott

2 min read

I have never been so unreasonable as to be inconsiderate of the needs or desires of others. A person who cares only and chiefly for my own wants, yet no one else's. An individual who could be characterized as selfish. I've always been generous and concerned about the wellbeing of others. Wanting the best and most for myself and all deserving folks.

And then I had a conversation one day and was told something that brought me to a serious pause and made me ponder, "has MS made me selfish?" Has it taken so much from me that I want it all back or help with my needs both so badly that I disregard the care or concern of others? Thereby making me selfish in my new normal?

"I hear a lot of 'I want...'"

I was having a conversation with someone at a rather vulnerable period in my life several months ago. My guard was down, and I was speaking very candidly and transparently with this person. Generally, I don't shy away from speaking my mind relative to my thoughts about challenges and experiences with MS. However, I do recognize the adage 'everything isn't for everybody,' and this probably would be one of those persons.

But.. like I said, it was a rather vulnerable period and my guard was down. At any rate, throughout the conversation about being unhappy with my lack of independence, I would mention things I desired such as: I wanted to be able to be cleaned up daily, I wanted to eat by a certain time, I wanted my house kept tidy, I wanted to not feel guilty asking to use the bathroom too early, too late or too often.

The response to my vent? "I hear a lot of 'I want,' which sounds a bit selfish to me. You don't think so?" Needless to say, I was quite taken aback. Am I selfish for wanting – needing – help with activities of daily living like hygiene, grooming, toileting, meal prep? Basic needs, humane rights? For wanting to care for myself like the days of old as opposed to being dependent on someone else to do things for me?

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Taking care of myself is not selfish

I saw a quote by Mandy Hale (blogger turned best-selling New York Times author) that said, "It's not selfish to love yourself, take care of yourself and to make your happiness a priority. It's necessary." She's right.

The answer is no. I am not selfish for wanting my essential needs met that I have lost the ability to do independently because this MonSter uninvitingly entered my life. It didn't happen right away, but over the course of my MS years, I have lost so much of my fine and gross motor skill function that I need primary or total assistance with self care. But aside from this, I don't ask for much and am content to do what I can do. And what I want for my well-being, I want for others as well.

Some of this I shared with my fellow conversationalist, to which he seemed to be receptive. I also recognized that it is blatantly apparent that awareness is crucial, key, and necessary to understand our plight. Otherwise, we'll have many more examples of what I refer to as, "what NOT to say to someone with a chronic illness, disability, or handicap."

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Anthonyp Member
The chorus of the song goes "and I raise my head and stare, into the eyes of a stranger, don't you know that the mirror never lies, people always turn away from the eyes of a stranger.."
Doreen H Community Admin
Dianne, Thank you for sharing this story and your amazing perspective. You certainly aren't selfish by trying to love yourself, take care of yourself, and making your happiness a priority. I admire that and appreciate the reminder. Warmly, Doreen (Team Member)
Cay Borduin Member
Thanks for sharing this. As a person with MS who also laments my loss of physical agency, I totally get this. In my opinion, what you're asking for is definitely NOT selfish, it's basic human dignity. 
1. Alene L. Brennan, RYT Moderator & Contributor
 <inline-mention username="Cay Borduin" user-id="4184746"/> I'm so glad to hear that this discussion and important message resonated with you. Based on the comments here, it seems to have hit home for so many of us. Thanks for sharing your encouragement and further validation on it. We're sending support and encouragement right back at ya! Best Alene, Moderator
Silver Oma Member
Thank you for sharing. I am in earlier stage of MS than some, but find that family and friends still expect me to be able to physically do everything as before. That is not possible as I do have physical limitations from the MS Monster (neuropathy, fatigue, balance issues, leg pain) as well as getting myself a Service Dog (SD). Needless to say, SD is also viewed as a "excessive/don't need" and not valued or accepted. I am finding out how hard it is to set and keep limits when my illness is "invisible" to others.
1. Alene L. Brennan, RYT Moderator & Contributor
 <inline-mention username="Silver Oma" user-id="8860740"/> I'm sorry to hear that you're dealing with so much right now. The early years with MS are definitely a lot to process and adapt to. I'm glad that you were at least able to connect with this community here. Being able to talk with people who "get it" is so important. You need to honor what your body needs, as hard as that is for others to understand when it involves an invisible illness, it's something that is so important to honor. Sending you lots of support. Best Alene, Moderator
CommunityMember6b32b4 Member
I understand how you feel. I have not lost as much as you are saying you have, but I too feel like a burden. Also I was with my daughter and brother the other day and a comment was made that I was making this disease up. I know they were joking but it still hurt. Yes many times I will do without or rant to someone else to just get it off my chest (because stress is bad for us), I just do as much as I can everyday and sleep and wake up the next day put my Big girl panties on and say "OK MS what you got for me today? The fight is on.' Then I go about doing what I can and what I can't, doesn't get done or I try it again another day. That's how I try and live my life. It works for me, however I know it might not work for everyone. All you can do is try. Good luck warrior we are all in this horrible fight which I also admit my same daughter that was making that comment is following the same path I did. We both had mono and now I have MS. So what's next for her?
1. Kim Dolce Moderator & Contributor
 <inline-mention username="CommunityMember6b32b4" user-id="8885140"/> Your concern about your daughter's future health is so understandable. We know that mono, aka Epstein-Barr virus, can play a role in developing MS. It isn't an inevitability, so fingers crossed. Should your daughter develop MS down the road, she would have you as a valuable support system. It is a struggle to educate our loved ones about our disease. But they can surprise us and step up to the plate. Thank you so much for sharing your experience with your brother and daughter, as well as your approach to living with MS. You help us all feel a little less alone! Hugs, Kim, moderator
Kelly W Member
I am a palliative medicine nurse practitioner living with MS. I meet with patients living with all types of chronic and serious illnesses. My counsel has always been they need to make decisions and choices in their best interest... not anyone else's since my patients are the ones living with the disease, the treatments, tests, side effects, etc. It is not being selfish to advocate for one's self, basic needs, and quality of life (and quality of life has a different meaning for everyone). In my opinion, those family and friends who put pressure on those living with a chronic illness to want things the way family and friends think they should be is selfish. Education and advocating help but goes only so far... nonetheless, I don't stop trying to help those without our daily struggles try to understand and support better.
1. Kim Dolce Moderator & Contributor
 <inline-mention username="Kelly W" user-id="7007867"/> Thank you so much for sharing your thoughts--and a big thank-you for the wonderful work you do on behalf of those with chronic and serious medical conditions! It is knocking me back a little, the notion that self-advocacy could be seen as being selfish. Not sure why, since I was accused of being selfish by an ex-husband right before he dumped me out of a 2-year marriage, lol. I must be in denial or something! I'm so glad to know that you are in the world, trying to educate people about better supporting their disabled loved ones. We need you, appreciate you, and love you for going to bat for us! Big hugs, Kim, moderator
2. Doreen H Community Admin
 <inline-mention username="Kelly W" user-id="7007867"/> We appreciate you sharing your experience and wonderful perspective. Thank you for doing what you do and for being a part of this community. ~Doreen (Team Member)
f5hwo4 Member
Replace the words I want with I need. Unless the person you are talking to has MS or another serious illness they cannot relate or understand. Potter
1. Alene L. Brennan, RYT Moderator & Contributor
 <inline-mention username="f5hwo4" user-id="3977349"/> that shift in words can make a big difference. Language - both the words spoken and the words that form our thoughts - are powerful. It's important that we choose them wisely. Thanks for sharing this. Best Alene, Moderator 
2. Kim Dolce Moderator & Contributor
 <inline-mention username="f5hwo4" user-id="3977349"/> Potter, once again, you have dropped some pearls of wisdom in so few words. Love hearing from you, always! Big hugs, Kim, moderator
icyrock Member
Actually I agree with the friend because we have to balance "symptom talk" with understanding that other people in our inner circle have thoughts and needs too. Only speaking for myself, this is evident in my husband and I's relationship. My husband has verbalized that he feels helpless in not being able to do more, but there are times I feel like my husband gets testy at having to do so much more for me than when I was healthier. When I would ask him about this, he would say that is what he needed to do as a husband. One day, I told the story about my aunt who also had MS. When I would go to visit her, if I got up to do something like getting a glass of water or going to the bathroom, she would ask if I could get her something while I was up. I told him that I realized I was being her hands and feet and it no longer felt like a visit, like it was with my other aunt. That gave him the space to admit that he does sometimes get irritated. Another time, we were in couples counseling and I mentioned that he's been more snippy than usual. Then I mentioned that, due to my leg spasms and urinary incontinence, I was getting up about 4x/night, sometimes needing his assistance. She looked at me and said, "Girl, he's tired! He's having interrupted sleep nightly then has to turn around and go to work, so he may not always be the most pleasant." Adding Baclofen got rid of the terrible night spasms and saved our sleep- and marriage! Diane, I like the line you wrote: the adage 'everything isn't for everybody.' Sometimes, when I need to do symptom talk, I turn to my fellow MS buddies. Everything shouldn't always revolve around how I physically feel that day. For instance, my mom-in-love likes to ask (aka interrogate) me about my symptoms and treatment, and I don't like having to answer that. Instead, this past visit we watched "American Idol" together and compared contestants. It was so nice to spend that time together with my health barely coming up.
1. Kim Dolce Moderator & Contributor
 <inline-mention username="icyrock" user-id="6777782"/> You make such good points! It is a balancing act, to be sure. I try to be sensitive to my boyfriend, who is very patient and helpful. He is hearing impaired, so I give him equal time for that. And I love how you share your mom-in-law's interest in American Idol and made the visit about that, having fun instead of talking about MS. Life is about so much more. Our wonderful online MS communities are there for us whenever we need to talk shop with those who get it. Thank you so much for sharing a bit about your experiences! It truly makes the world a little smaller, and makes us all feel a little less alone. Hugs, Kim, moderator
trishnafotz Member
Your friend is the selfish one. I leave those friends by the wayside and swallow my frustration. 
1. Kim Dolce Moderator & Contributor
 <inline-mention username="trishnafotz" user-id="4060142"/> I can definitely get down with your assessment, though I might characterize the friend more as being tone deaf, he doesn't "get it." Nice that Dianne seemed to raise his consciousness. But we can't always be in a place to teach people how to speak to us. It's exhausting just to be! I did let go of a lifelong friendship with someone who spoke to me similarly. Sometimes it boils down to self-preservation. Thank you so much for sharing your thoughts about Dianne's experience. I hope you find comfort in this community. Hugs, Kim, moderator
vogueloulou Member
Hmmm. I live in U. K. and my biggest “selfish call out “ comment came from someone in charge of my Disabled parking bay which has a cast iron cantilever barrier from the 1950s. I asked them to help pressure the Borough Royal Borough of Kensington and Chelsea ( the richest in U. K. ) to change to help it become accessible as my M. S. progressed. There are three other disabled spaces in there. They said, “ why should we change it for just you ?” Why indeed? I shrank into my shell, so shocked as I thought that it would also be progressive of the Council to think in this way across every Car Park with a similar barrier. I still have to battle this barrier, I have to stop someone on the street or not go out. I am told to have a carer to open the barrier which the local Council will happily pay for, but not when I return back to the space. It is not a human right of course, but an attitude problem of my politicians. They decide what I can have help with and what I can’t have help with. They decide how i live my life, yet every Care Plan says to maintain Independence, but don’t dare ask us to help you do that with changing something simple like a heavy barrier to a fibre glass barrier. I often see this big black lump of metal as a metaphor to how living with M. S. is, I can see my car, but it’s just out of reach of my pressing a button and walking in with crutches happily to go to the park or other. If only it would work for me … (and the other disabled people) 
1. Kim Dolce Moderator & Contributor
 <inline-mention username="vogueloulou" user-id="4036164"/> Bureaucrats! What are we going to do with them? Making such tone-deaf remarks as "why should we change it just for you?" Nothing is just for us. It might be our personal experience, but others are wrangling with the same obstacle. People who do not share our experience won't think that way unless we tell them, unequivocally, "You can be sure I'm not the only one in the city struggling with a heavy barrier!" But it is hard to self-advocate in that way when we are tired, alone, and get blindsided with such callous remarks. We need others to advocate for us, too. On a government level, the wheels of progress turn slowly. Grass roots advocacy organizations have the ear of politicians. We can't do it alone. Thank you so much for sharing your experiences. I hope you find some solace in this community. Hugs, Kim, moderator
nurseogden Member
I don't think you are selfish in wanting your needs met. However, I have found it is more easily digested by others if I say that I really miss being able to do these things for myself. For instance using your examples:I miss being able to be clean up daily, I miss being able to decide when I want to eat, I miss bring able to keep my house tidy, I so often feel guilty asking others to help me with my personal needs such as when I need help using the bathroom, especially when it is not on the schedule that my caregiver's prefer. I believe many people care and feel like when we say that we want something, they are expected to make it happen. To say we miss being able to do those things ourselves gives them the opportunity to empathize and help if they desire to do so, but also allows them not to feel guilty if they don't FIX the problem.
International Ann of Mystery Member
I'd say YES, MS has made me selfish. Selfish to the point where there isn't enough bandwidth in my life/mind/body to be that generous, loving person I was; that person who helped others, and who made them feel special and appreciated. That's what stings the most.
1. Doreen H Community Admin
 <inline-mention username="International Ann of Mystery" user-id="4387262"/>, That's a hard pill to swallow and understandably difficult. Thanks for chiming in and joining the conversation. ~Doreen (Team Member)

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