I was diagnosed with MS in 2006. My family seemed to be very concerned and supportive; sent me flowers and cards. That lasted about a year. Now, I am leary to talk about MS, how I am feeling or any treatment. If I do, I get a "You sure play the MS card" or "I am sick of hearing about your MS". I don't get invited to family fuctions any longer. They tell me " I knew you wouldn't make it so I quit inviting you". They also tell me that they would have to pick me up because I don't have a car; which is really sad because they live right around the corner from me. Does anyone else experience this with their family and/or friends? Thanks for allowing me to vent and for reading my post.
Support from Family and Friends - My MSAA Community
Support from Family and Friends
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Alicesyn1105
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Yep, totally get it. I had another long post under another subject head but basically family is not supportive. No one asks me about my MS. Since my diagnosis I have not been treated good. My sister totally started treating me like crap. My mother moved minutes away from me in the state that I'm in and after half a year and when I told her I had MS she moved back North. My sister and her bought a condo here because my sister told her she was going to move here and after she bought it and she got my mother moved here she said she wasn't moving here. My mother said she would have never moved here if she would have known my sister wasn't. Gee thanks. And 6 months later after her move I told her about my MS. I was struggling with her being here because she wasn't well but I was glad to be around her and helping her out. But it was stressful between her and my a****** boyfriend of 10 years. I had a relapse. My boyfriend couldn't handle everything and broke up with me. Instead of him being supportive and helping me through this adjustment. Then a couple months ago my mother said she was moving back North. She told my son that she took care of my father for years when he was sick and took care of my older sister for years while she was sick and that she wasn't well enough to do it again. So she left and abandoned me here alone during some of my darkest times. I don't need taken care of, I was helping to take care of her. Both of my sons live a couple hours away. I invested the last 10 years of my life in this relationship basically doing everything with him. And for the last year helping my mother. And they both abandoned me. I know I should be getting over this but I can't. I was so supportive to him. Helped him through his bouts of alcoholism and through his anxiety issues and depression issues and surgeries. And then I go through a bad spell and he's gone. And how do you come to terms with your mother leaving because you have an illness and she wants to be around her other daughter. I know I've probably given you more than you've asked to hear but I am so hurt and feel so alone. I don't really talk about all of this because no one really wants to hear it and then sometimes like this it just comes pouring out way too long. I'm planning on finding a counselor to talk to. Not for them to try to help me fix anything cuz nothing can be fixed just someone who's getting paid to hear all of this s***.
Thank you for the reply to my post. I am so sorry to hear about what you are going through. Life isn't fair! Speaking of men, mine dumped me too! He finally told me the truth that he is married and lives with his wife in the Bay Area. He also told me that I am jealous of his wife because she can swim, ride a bike and go for a hike and I can't. It took me a while to get over him; but I did it! The last friend I have is always stealing from me; makeup, money. I have pretty much decided that I am going to be alone the rest of my life, with my cat. That is OK too! Anytime you feel like talking, I am here! We wll stick together!
👍
I think if we would have saw all the red flags or rather acknowledged all the red flags early on we wouldn't have wasted so much time on a man who wasn't going to be there. It's just hardest when your family who is supposed to love you and be there for you backs away. I'm sorry to hear that your family is not making accommodations for you to join in. I'm probably going to be alone for the unforeseeable future also. I don't have the trust or energy to put into a new relationship. I have to get my self esteem and confidence back on track. Thank you for being a supportive ally.
That's really just totally crazy that he would tell you something like that. He didn't even care how much that would hurt you saying that. You are definitely better off without him.
Having a therapist to talk to is a good idea! Someone you vent all your anger and frustration to is always nice. Of course, we are here as well.
I thought about that; however, I can't really afford it. Besides I don't have a car bc I can't drive due to the MS.
I know I need to work on myself too. I don't really have the energy! Like I said, anytime you need to talk, I am here for you! We will stick together!
Absolutely! It is funny, when I first met him, I thought he was such a nice guy. What a fool I was! He just used me. But that is ok; what goes around, comes around. He will get his!
For sure, it will come back around and he'll get his due. It may take a while but eventually your behavior catches back up to you. Although if he's a narcissist like my ex they don't really feel remorse. Although he always liked to have a pity party for himself but doesn't realize his behavior causes it.
I just can't believe I was that stupid. I always tried to be nice even though he was such a jerk to me.
You weren't stupid. We're supposed to be able to trust people.
I am sorry for all you've been going through and that you are not getting support from family, I can't imagine what that's like.
Always feel free to vent here, we all do at one time or another.
Thank you very much!
wow I'm sorry to hear that from both of you. I try not to burden my family to much about my MS. I just say few things like I'm ok, or i'm tired. The weather hurts me. I keep it short when they ask. My boyfriend seems to support me but He totally don't always get it. When I found out about MS I gave him the chance to leave. We are not married, had been together a couple years before I found out. I've giving the chance several time to be out without any hard feelings. He swears he is in it for the long haul. I sometimes feels he wish he had took the out, but its been many years we have been together so far. During the times when my MS acts up and he just don't seem to get it I wish I was single. Don't get me wrong is is supportive to a certain limit but when you can't see the problem and i'm laying around I get the looks. Nothing is ever said but there is no need to with the look on his face.
I tell myself that if we ever split I will not be in another relationship because I don't have the time nor energy for it. Its just not worth it going through the whole how MS may affect me in the long term and how its is affecting me now. Plus with some of the stuff I am going through right now I know for a fact that if I was to get into another relationship there would surely be cheating on his end. So thankful that my boyfriend is totally against anything outside of the relationship. He really dislike cheater. Not worth it to me. I rather be by myself, less stress, and worries, and I wouldn't have to answer to anyone.
I feel you both and I wish you both the best of luck, and I hope you will find peace within yourselves. Love and put yourself first, the rest comes later or maybe not. Its your family and friends lost if they choose to push away from you. We can never get back tomorrow so live for today.
🙂🧡
Thank you for your thoughtfulness.
Thank you for all of your insight that you posted and for sharing. I also gave mine an out after we were together for 6 years I found out but he said he wanted to still be with me. But I could tell the last couple years that he really wasn't in all the way. You're right that it would be hard telling a new partner about this and trying to make them understand.
Thanks for sharing this with me. I know when I can talk about that awful situation I got myself into, I feel a lot better. He also told me that no one would want to be with me because I can't do anything (ride a bike, hike, swim. travel). He said I was a "waste of skin".He didn't care if he hurt my feelings. Totally a different guy than the one I met two years ago. I wasted a lot of time and money on him. (Live & Learn)
Wow, that's so low. That was abuse. You are so much better now. It does feel better to share because sometimes we just keep it bottled up inside and then it affects our health.
Man.. What a loser!
wow sorry about that. Yes live and learn but you are a child of the Lords so he will get his and have to answer for all that he said and did. sometimes that gets me through it also. (I believe ) that everyone has to answer to someone at some point in the after life whom ever you believe in if you do. I do and what can they say when their own voice is being played back to them about the treatment they gave to you. Forget them you have us here and sometimes that all you need. I know that its nothing like having someone to cuddle up with, but when they are not nice people its not worth it. Get a pet 😁 they seem to understand when you are going through something and they wont ask you questions or treat you like crap. They just better hope they don't come down with something and want someone to be there for them or help them in their time and need. you both are better off. No one can love you the way the Lord and yourself can.
❤️
I have a cat. I adopted her from the pound about 5 years ago. She was an abused animal when I first adopted her; however, now she never leaves my sight. She is an awesome friend!
we have a hound. its funny because he is always right under my feet or by my feet when I'm sitting. When I do have the energy to vacuum he follows me to each room sits either the middle of the floor or the edge. I feel like he is my guardians, like he follows me to back sure I'm ok. It makes me feel so loved
You got to love them! Animals love you unconditionally! I have a cat that is my side kick. She is very shy. She means the world to me!
Alicesyn1105 & Humbrd sounds like it was for the best that your significant others left as they were only causing more stress in your life which is one of the worst things when you have MS. As for your mom leaving & moving back, I'm sorry you had to go through that. My mom disowned me & then died a few years later & several years before I was diagnosed with MS. It hurt at first but I eventually got over it & forgave her. I needed to forgive her for me & my well-being. Forgiving someone gives you the freedom to let go, & letting go is such a relief. It wasn't me that caused her to disown me it was her selfish thinking. Selfishness will make for a very lonely person & she was. Your mom was probably being selfish because she was sick & knew she couldn't handle taking care of you, not that she had to but in her mind as a mom, that's her responsibility. See if you can find a support group in your area if you can. I have a couple of groups from church that I attend once a week. It's just nice knowing that there are other people out there that also care.
That is what is difficult for me. I just would like someone to act like they care instead of using me or taking advantage of me.
You're right we have to let go of stuff but I just can't right now. I'm working on it. 🥴
It is difficult; especially when there were feelings involved. I just keep telling myself "Live and Learn". I found out my family had a birthday celebration and I wasn't invited. Oh well! "Live and Learn". I just act like it is no big deal. (It makes me feel kind of strange.)
Sounds as if your having a tough time. My husband has MS and his family do not acknowledge he has it or understand what problems he has. We never mention it now or expect sympathy. I think in general people do not handle illness well. Take care.
am sure you are right! It is just odd that they seemed to care at first; now they don't mention it or want to talk about it. They always tell me I am playing the MS card; whick I don't. Thank you for your nice response to my post.
And also because you don't look sick & probably don't act like a sick person. Most people don't understand that.
You are so right! Thank you for your response.
It's sadly all too common and very, very isolating.
Yes! My ex-wife left as well.
My ex was a Ph.D in Catholic THEOLOGY.THEOLOGY. she taught Catholic priests even.
And yes, they will get what they deserve, if not in this life, then the next....
My immediate family doesn't want much to do with me anymore. I used to be an electrician and did a lot of work free for them. Now I can't. It really is funny, one finds out who their friends really are in this situation. I guess I found out I really had none....
My father helps but he is 78 just diagnosed with Altimimers so his memory is slowly going. Physically he's doing really well though....
My mother who was my main support system passed 3 years ago.
So frustrating and sad.
First of all, I am so sorry to hear of your Mother passing.
I can throughly relate to being frustrated and sad; especially when it comes to the jerk I was seeing for over a year. I started putting two and two together only to find out he was married and living with his wife. He kept telling me he had feelings for two women; (me and his wife). Boy, did I feel stupid! He totally used and took advantage of me. He started saying some pretty cruel things to me; that I was jealous of his wife because she could ride a bike, go on hikes and swim and I couldn't. That was the last straw!
My family keeps telling me "I play the MS card". I finally came to the conclusion that I will be alone the rest of my life and that is OK. Just me and my cat!
Thank you for replying to my post. I appreciate it.
Have you ever thought of contacting the wife to let her know she's married to a jerk?
😁 if she did tell her it might be the best thing that's ever happened to that wife getting confirmation. But then again you have to be careful because men like that that have no remorse may then retaliate against you. So it's probably just better to move on and say good riddance.
I'm sorry you also went through that with a partner leaving. You're right you do find out who really cares when you're down.
Alice, I'm gonna pray for your family right now and hope they learn sensitivy and the spirit of discernment when it comes to "false MS misceptions." We all deal with so much; - no one has time for "attention seeking behavior games"- seriously!!!! When we are sick - we really don't feel good! We still have to educate and "love -on " people if at times from a distance.
I used to be a Trainer and did one on "Diversity/Inclusion. Always difficult for a woman of color especially newly dx w/ MS(when I was working) especially when you detect resistance to what "people don't understand -they fear misjudge."
I came up with a good "thought provoking exercise" and I wondered how your family would feel if the next time they "oh here she goes with that MS card" - if they spent a day in our life! For example, if they had their bodies wrapped in a snuggy (hands by their side) and flat on their backs on a table for 1 .5 hours! Opps, we would have to say: "don't move" and lightly bang a pot near their ears while Kenny G is playing Songbird!
Tell your family that's life with MS and getting a MRI before the GAD, I.V. we didn't even get to infusions and so much more! This saddens me, but stay strong sis, we here for each other!
Blessings Love and Peace
NeeC
Thank you for the thoughtful post. I really appreciate it. The last few days I have opened up about my feelings and I feel a lot better. There are some very nice people on this site; yourself included. Bless you!
Here for you Alice cause I've been there.Blessings my friend and take care of you 
I can tell you how it honestly feels on the caregiver’s side. It feels horrible to lose your partner that you hiked and skied and traveled with. Traveling with my husband is not a vacation. It’s very expensive for what he is able to do - we spend most of the time in the hotel room for various reasons. So when I was working and had limited vacation, I traveled without him, mostly with friends. He was nice enough not to resent it. Now that he is more disabled, it’s too expensive to hire caregivers so I can’t travel without him much. Therefore, I’m glad I went when I did. He can no longer fly. I took him on an 11 day driving trip last month (mainly so he could visit with his best friend from childhood), but I’m retired now and have time to waste in hotel rooms so that he can get out and see things. It was a hard trip for me doing all the driving and loading and unloading all his luggage and him and his scooter, etc. He can barely sleep in a hotel bed - essentially he needs a hospital bed now, but we made it work. It was nice to see the things we saw, but it was a completely different trip than it would have been if he were healthy. I try very hard to not think about what we are both missing, but I do sometimes feel like I am living with an illness, too. It feels SO good to get away with healthy people who can do the things I like to do and who can manage their own toileting and showers and luggage, etc. On a daily routine basis, I entertain a LOT - averaging twice a week. He can’t go out to restaurants and he can’t use other people’s bathrooms so we invite people over. Really good friends invite themselves and bring dinner. I guess I am blessed to have old friends - I don’t have local family so I have nurtured my friendships for 40 years. My husband also has a group of poker buddies that he has known for 35 years. Some live an hour away now, but they come to our house every month for poker and they bring dinner. Another couple fly in from out of town once a year just to spend time with my husband. Family doesn’t do much. I get lip service from my sister. We are a one day stopover on her way to do more fun stuff. Parents are all dead now. My kids are nearby, but they have their own lives. We see them often, but don’t expect daily help from them. One son is sometimes able to come and work from our house when I go out of town, but I still hire part-time caregivers even when he is there because my husband is not comfortable with our children doing the dirty stuff.
Thank you for the nice post. You are a good person. God Bless
Thank you for this, your perspective as a care giver. I'm sure you opened a few eyes with your very honest post. I'm glad you are still doing things you enjoy even if your husband no longer can. You need to take care of you first in order to take care of him. I think he is a lucky man to have you.
I never got the initial support you did. My grown kids said I blamed everything on MS. The way my oldest child said that to me shut me up. I don't talk about it anymore. My husband is a bit more supportive, but just a bit. I don't say anything about it to my kids (or any other family members, actually) anymore. My dad had been dead for years and my mom had dementia at that point. So yes, I get it.
I’m sorry to hear that your family is letting you down! I guess my advice would be to look for other people that could be your family that may not be biological! I know that in family my sister has MS and she is the last human being that I would ever talk to about my concerns. I tried in the beginning and learned really quickly that it was not a safe place to go! She is completely in denial and with her path of MS she can be!
My oldest sister, when I was diagnosed, cried and sobbed that “now I’m going to get MS”. (Since her two sisters have it)
My family either tries to baby me completely or they say that I can talk to them about anything which is absolutely not true. They boo-hoo any concerns or they say something stupid such as I think it’s your shoes, I think you just need to concentrate and lift your foot better, you just really need to lose weight and It will make a huge difference for you or I think you just need to stop walking so slowly and walk faster…that’s your problem. Ummmmm…no it’s MS! I had to do a lot soul searching about what I wanted from my family and I now have very limited contact with them and lots of boundaries. It is hard to come to that conclusion, but with help I made it!
You're someone who can relate with me about the third sister thinking they have MS also. I sure hope she never does get diagnosed. But my sister is always trying to convince herself that she has MS because her other two sisters have MS. She says she feels weak and off balance. I sure hope I'm not just being judgmental, but I think it's because she hasn't done anything physical in a couple decades. She doesn't move. She doesn't go walking. She says her body hurts so she doesn't move it. She hasn't talked to me in a couple of months so I don't know what's going on.
OK so your comments made me giggle out loud. I completely relate to what your sister says because my sister says the same thing. She’s always on a diet, losing weight and exercising but never has dropped a pound. She also is a hypochondriac and always is suffering from some ailman that everyone in the family makes a big deal of. I laugh because I say if she had to deal with my issues she would be on her deathbed every day. Sometimes, although their family, it might be better not to have them around two place a dark cloud around you.🤗
i'm so sorry. i think they rally better with short term things or at least with something that can be cured or is terminal, like cancer. however, that behaviour is completely inappropriate and far from loving. it's like rupaul says, 'we get to choose our own families,' except i'm basically a shut in, lol. however, i've met some wonderful people here.
my mum is always afraid and she feels guilty, like it's her fault, even though ms (and ms adjacent, i'm in limboland) hasn't occurred in our known family history. i think it's a mum thing. i usually only tell her about symptoms when they surprise sound from me b/c of pain or if i know she can see it, like with my walking issues.
i had a so-called sibling i used to tell how i honestly felt and he told me it really wasn't that bad, except he used crueler words. my mum (hoping i'd forgive him and keep talking to him... i forgave, but i'll never trust him again) said it's hard for people to know what to say.
mmmkay, but i have been and have loved a chronically ill person. my dad died last year from parkinson's. when he could still hold the phone, i'd call him every other day and just let him vent. or laugh, whatever he needed, but i don't think most people love that way.
it's not your fault, i do know that. and i'm sorry.🤗
That was very kind of you to call your father so often just to check in and let him Express himself. You're right there isn't that many people that do that. As far as siblings, I'm the same way now with my sister I don't tell her as much because it's on deaf uncaring ears.
that's hard for me to understand. yes, there were days when i had to mentally gird myself before calling my dad, but i still called. after all, he was the one confined to a bed. there are times when we all really need someone. you'd think siblings would care... nope. one is callous and the other pretends i'm not as sick as i am b/c it hurts her feelings to acknowledge how ill i am. like that's helpful. that's why i love this website. people actually understand.
Yes, family makes assumptions about my condition. Just because you can’t tell I have MS by looking at me or spending time with me doesn’t mean I feel good. I feel forced to hide my symptoms and never complain. Only people with MS truly understand. I gave up trying to explain MS or how I feel. Many of my senior friends with medical problems also get dumped by friends and family when they can’t keep up. I will try very hard to be a better person than they are, to be inclusive and never be a fair weather friend.
Me too, I'm always hiding how I'm not feeling well. It's a very humbling experience when you get a chronic illness. I think I've always rooted for the underdog and tried to make people feel better and support them. That's why it's just such a pisser that I don't get that in return.
Alicesyn1105 how are you doing? 🌺
I am doing ok. Thanks for asking!
Alicesyn1105 Hope you are feeling better getting the emotions out vs bottling them in (inherit stressors). You may want to consider reading the book The Body Keeps The Score. I've found that even if you dont' want to read it.. looking how to cope with 'grief' for he life that you no longer have and developing skills for the low points will help build YOU when you need YOU. It doesn't mean it's overnight or that it's perfect but as others have said 'focus on you.' Karma will take care of the the people that are selfish.
@everyone else - " humbling experience when you get a chronic illness" was a great quote from Humbrd and I've hard/read it a few times. It is very true. Dealing with an INVISIBLE chronic illness that turns Visible for many of us is HARD. People know and understand a broken bone or being trapped in a wheelchair but they don't know how to live that life or in that body. It would be a good experience for anyone to learn to walk in another shoes (blindfolded for the day for being blind), sound deadening headphones to minimize noise / deaf; sleep deprivation for a few days to relate to the fatigue/imbalance one feels living daily with MS. I know I don't wish anyone to have a chronic illness but sometimes kindness and honor goes a long way for how people really feel about others vs selfish and manipulative. You certainly know who your friends are and who actually cares for you when things like this come up.
I will always be grateful for choosing the family I'm surrounded by vs surrounded by people that can't support me.
I think we all need a laugh/hug and a good cry at times. Just know that there are others that relate (obviously you are here) and every day is certainly a 'new day.'
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