Guilty Feelings - Member Topic of the Month - October

[Seasha]

Your Member Topic for October is here!
You made suggestions and we listened!

Thanks to all who participated in September's Member Topic of the Month!

For the month of October, your topic will be about the Guilty Feelings you might have living with MS.

• Letting people down when you just can't do any more
• Being a burden and worrying those who you care about
• Being less disabled than others with the same problem
• The potential of passing on the genetic predisposition to offspring
• Using the problem as an excuse to avoid doing things that seem to hard

Please join us in this important conversation on different ways in which you manage these worrisome issues. Your thoughts and concerns on this topic are always welcomed.

Thank you all for your participation and stay tuned for more of your suggestions in the months to come! We appreciate all your thoughtful ideas and hope to hear more from you! You can add more suggestions here:http://www.msworld.org/forum/showthr...the-Month-quot

[murphylives]

I find I am either feeling so GUILTY as to be depressed by it or ANGRY that no one seems to understand!
ANGER, when some family member says, "I just told you that. Have you forgotten, already?"
I usually respond with, "It must be MY MS!"
Guilty, when my spouse is stuck with running most, if not all, of our errands due to my fatigue, and stuck handling all of the bill paying, because I forget so much, He has to cook a lot or eat out, because I am too TIRED to cook.
MS HURTS

[dastardly]

Hi Guys I hate that feeling of guilt when the jobs I should be doing fall on to my wife and kids, I should be mowing the lawn, taking the rubbish out, and vacuuming the pool. When we were younger we agreed my wife would look after the inside and I the outside keeping it neat and tidy, now I am letting the team down I feel "guilty" as we are both very house proud and I see the look in her eye at how the yard should look it breaks my heart Craig

[loopey]

I was never much of a crier. Now it hits me from no where! I feel guilty when I cry in front of my husband because I know it hurts him I used to be strong and now I feel like a little girl who is lost. I feel guilty for that too like I am too weak to handle this MS.

[hunterd]

I can barely remember these feeling before MS, now, they seem to be a nearly constant thing.
I used to be the person who would work from sunup until sundown with only a lunch break and a dinner break ( I live on a farm). Now, I can barely sweep the garage without taking a break, and people that have known me for years are used to the "old me" and they do not understand why the "MS me" is not like that. And it seems that the more you try to explain, the more you are trying to "make up excuses".
the other thing that worries me is the fact that I could possibly pass on this terrible, terrible disease ( not that there are not much worse diseases). I had my children before my diagnosis, so that fact never came into consideration.
the guilt of being a burden to those that I love can be overwhelming at times. Especially when my family has a chance to do something that I would struggle with at best if not be something that I simply could absolutely not do ( like going hiking for example). As I am in a wheelchair 24/7, mobility is a huge problem.
These are only a few examples that I can think of off the top of my head, I know there are many more. Another day, another time...

[Marco]

I am not trying to start an argument, but I do want to give a slightly different perspective.


To me, guilt is an appropriate emotional response when you have done something wrong or violated your morals/ethics. That's quite different than experiencing loss, sadness, grief, or disappointment.

I believe the distinction is important because internalizing guilt can lead to a negative self-worth. It's not your fault that you have MS or limitations caused by MS.


We have enough challenges without continually beating ourselves up over things we have no control over.


I too have limitations that leaves me feeling like a "kill joy" or "buzz kill," but that is normally my own issue. I believe many people would tend to extend more grace towards us than we extend to ourselves. The exception could probably people we live with because they might have become too familiar with us.


I try to proactively set expectations in advance. I try to avoid events or places where I would be problematic for me or impose significant hardships for others.

[dm0329]

Boy can I relate!

My (deceased) father's last living sibling just passed away. I had intentions of going to the funeral, but I had a bad MS day and was unable to pull myself together to get there.

I get worried about low vision issues when trying to travel to new places (reading street signs, etc.), and the fatigue makes things so darn hard sometimes to even get out of the house!

Then, I get "shamed" by my only sibling (who lives in another state) for not going because I am "lazy" and to "pull myself together" etc. After twenty plus years dealing with this MonSter, "shoulda woulda couldas" become another struggle!

Somedays it's just sooo darn hard!

[Poppy7402]

I've been through periods where I've felt like an absolute burden to those around me, particularly when I'm in a relapse. I hate the stress that I cause those around me as they worry about what's happening.

At times I feel guilty because of the impact on our finances due to MS. We should have been really comfortable financially, but we're not now. Previously I was an extremely high functioning person with a really well paid job and now I struggle to work at all some days.

At other times, I don't worry about any of it.

[hparks]

When I was first diagnosed I had a surprisingly upbeat attitude. "I'm sorry, but you have multiple sclerosis". My first comment, and reaction, "That's not work for me because deer season starts in a week".

Now the thing that's not going to work for me is how I feel I'm treated and how I feel about myself. I feel ashamed and guilty of having MS. I returned to school, completed my B.S. in Criminal Justice and started looking for work the very month I was diagnosed. 5 years later, I still have no job. I feel ashamed and guilty about having MS because of what it's done to my career future. It's like I went out and robbed a bank or murdered someone and now expect employment in the criminal justice field. What amplifies this feeling is being told by everyone (and every organization), "FOR THE LOVE OF GOD, DON'T TELL ANYONE YOU HAVE MS!" I realize that regardless of the legality, people will skip over you for someone who is healthy. I guess this will even happen if you try to be "responsible" and only apply for jobs which won't require you to put others in the way of physical harm; such as being a beat cop versus working in the records division.

I now fully understand the feeling of guilt and shame of having MS.

[kellercats]

I like what Marco said about allowing people to extend grace. Most people are understanding. Not potential employers.

I had the opportunity to stay home after our second child was born and have been a stay at home mom for over 20 years now. No complaints, it's been great. I was diagnosed when when my youngest started kindergarten. It slowed me down. I felt guilt when I had to say no to volunteering as much as I did. Now I see that it was emotion wasted - I now look at my energy expenditures as I would a budget (when my brain cooperates, that is).

However, since then, I have not been able to obtain full time employment. I did disclose my MS diagnosis at one interview to let them know I would need an afternoon off monthly for infusions. No Hire.

Guilt hits when I see my husband carrying the financial load. I try to remind myself that it does no good, but I don't know how to talk about it with anyone. I am glad to see this topic in the forum. It is good to see your input and connect.

If you wish to forget anything on the spot, make a note that this thing is to be remembered. ~Edgar Allan Poe

[dkp]

Now, please keep in mind that I am in my 60s and being philosophical about having MS. It pains me to read the distress in many submissions.

I was diagnosed late in life, 58 yrs old, now 65. Thank goodness! I did not go through raising children or seeking employment with MS. My marriage is strong. I have a spouse, family, and friends. I am amazed how helpful and caring strangers are towards me. It is significant to allow people to help you. Yes, I am high maintenance, but not a burden. I cannot do my fair share, but I am not shirking my responsibility. I participate when I can. I surround myself with people who understand.

If one feels guilty/worried about possibly passing on MS or any disease or ailment.......well, none of us would have children, would we? It is not what your dealt with in life, it is how you deal with it.

Before I was diagnosed or symptoms started to appear, yoga and meditation were part of my life for decades. So, to continue these practices was not a problem. These practices help me to center and quiet myself. I am not a naturally calm person. But, I am when I do yoga or meditate. Which I am sure helps me to cope as my symptoms get worse.

So, this my 2¢ worth.

[Tash1217]

As a 20 MS veteran I can say I have been through it all and then some!

MS Guilt was the hardest for me and changed me as a person. I was an intelligent, kind, successful go to girl until... MS became my identity. I became filled with such guilt and I allowed MS to define me.

Now at 42 I see how idiotic I was to accept less because I let guilt tell me I'm a burden so need to be thankful for whatever I get.

Once I let go of that 10 ton weight on my back I had the strength to be me again. Of course guilt creeps into my life daily and sometimes it still makes me feel like a burden. I have my personal pitty party then put my big girl panties on and see that I'm stronger then most because with all of my challenges I am can be the best me possible.

Let go of the MS guilt! It'll change your life!

[Fishytrout]

Thank you, Marco, for this comment: "I believe the distinction is important because internalizing guilt can lead to a negative self-worth. It's not your fault that you have MS or limitations caused by MS". You pointed out something we all need to constantly remind our selves. With that said, I too have guilt. I have been a "guilt feeler" all my life, but with: 1. no longer being able to work (I tried desperately to continue the job that I loved) 2. seeing personal things disappear (such as the house I could not remain in). 3. relationships with friends strained (or in worse cases lost) 4. loss of my hard earned savings and an exceedingly large amount of my retirement funds I find myself feeling guilt more than I ever have and it flies around my head like a rocket.

Sadness is another and sometimes OVERWHELMING emotion I experience. Sadness for what could have been with my life.

To my MS family= I pray for your strength and for peace to find and fill you.

[jamilea]

My biggest issue in the list in the OP is feeling like I'm letting someone down. When I start feeling better, (coming out of the fog; I call it) I clean, cook, feed the dog, etc. so that my husband doesn't have to do it when he gets home. He usually does these things the most when I'm down for the count. I haven't figured out my limits yet so what happens is I get overheated and over do it. Then I'm sitting there for the next there hours barely able to eat my food, spend quality time with him or do anything but sit there with ice packs and rest.

This makes me like I am letting him down because I should've known better, but then I would've felt even more disappointed if he had to come home one more day and do all of that stuff for me again. He is insanely understanding and loving about it, but I can tell he is disappointed . . . not in me . . . but in the way in which this can sometimes rob us. He says all of the time that he doesn't expect me to do this stuff when I've worked all day, but he works all day too.

I haven't figured out a way to manage this yet. I hope somebody else can tell me how.

[Seasha]

These are interesting comments from you. I can't remember who suggested this topic awhile ago, but thought it would be an informative eye-opener.

My deep feelings go along with Marco's comment in that we have done nothing wrong, morally or ethically, so therefore no guilty feelings should be a part of this feeling. I feel extremely sad and disappointed for some of the same reasons you all have given, but guilt sometimes does creep in.

Sad that I can't do more when I help babysit my new granddaughter along with her other grandma. This puts a burden on her. Sad that I have to rely more and more on my husband who comes home exhausted from work and has to then help me. Also true with our finances. This puts a burden on him. Sad that I can't do more with my friends and have to turn down activities over and over again, therefore losing some of them.

So, sadness prevails with a bit of guilt too- after all, I'm human and have more stuff about myself that needs work - including a more powerful dose of self worth!

I love that we can open up among ourselves and discuss what's in our hearts.