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Do your family or friend's truly understand your MS condition?

  • By Dianna lyn

    I have a friend who continually makes rude remarks to me, for instance: How come you are not up at 6:00 a.m.? In the morning? Well, I don’t function well in the mornings, they are bad for me, even through I try to. So, I tell her, it’s one of my MS symptoms, and she still continues to complain about it. Then, at night, it takes me a long time to get supper on the table and she again continues to complain, “why do you all eat so late at night, I just don’t get that?” Well, it takes me a long time to concentrate on planning my meal for the night. She tells everyone that we eat late.. So how do you deal with such a friend or family member who acts like this? And they are actually hurting your feelings?? Any suggestions?

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  • By Kelly McNamara Keymaster

    Hi Dianna,

    Thanks for reaching out and for being a part of our community. It can be so frustrating when those close to you don’t understand everything you’re going through and the impact MS can have. A few of our writers have written about this topic. You can find their articles here:

    https://multiplesclerosis.net/living-with-ms/what-to-do-when-loved-ones-dont-understand/
    https://multiplesclerosis.net/living-with-ms/well-you-look-good-understanding-that-you-dont-understand/
    https://multiplesclerosis.net/living-with-ms/the-1-thing-you-can-do-for-someone-with-chronic-illness/
    https://multiplesclerosis.net/living-with-ms/invisible-illness-pain-not-looking-sick/

    Know you’re not alone and the community’s always here whenever you feel like you need support or just a place to talk.

    Wishing you the very best!

    – Kelly, MultipleSclerosis.net Team Member

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    • By Stephanie J

      I’ve struggled with judgment from so called friends for a very long time until I realized that I don’t have to make them understand my disease! True friends and family don’t judge they listen and try to understand the best they can. The energy I was waisting by focusing on and there awareness was not good for me and brought unnecessary negative feelings and unwanted stress into my life. It’s hard to distance from people you care about, but I decided that my health was number one. What good am I doing by making myself sick and at risk for relapse trying to make someone understand the most difficult, and invisible disease? I have no issues talking about MS and how it affects me to anyone. I just no longer feel I have to be judged or looked at like I’m crazy by anyone… I still have many close friends and family and I don’t miss the ones that have gone away. Surround yourself with understanding people with positive things to say and provide for you in your life. Take care of you!

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  • By Tiffany-MS-MOM

    My family doesn’t understand or care to in my opinion I have rrms my mother makes doctors appointment for me that I never go to cause I don’t know these doctors but anywho she tells me I’m not doing all I can to help myself and I don’t do my hair and makeup like I use to that my boyfriend will leave me and a lot of other stuff

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    • By Meagan Heidelberg Moderator

      Hi Tiffany –
      Thank you so much for sharing. We are sorry that your family doesn’t seem to care or want to understand MS. It seems as though your mother is trying by getting you doctor’s appointments, which is definitely a step in the right direction! Please know you’re not alone here. Thank you for commenting!
      Meagan, MultipleSclerosis.net Team Member

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    • By Stephanie J

      I also have RRMS and I understand what your saying. If this diagnosis is fairly new it take time to take it all in. You should see a doctor, but I agree that you should be a part of that process entirely. Make sure your mom knows that hearing hurtful things like she said about the way you look causes stress and stress is the #1 trigger for a relapse! Stay strong and committed, get educated about the illness as much as you can and surround yourself with positive people and thoughts! It’s going to be ok, just take steps at your own pace towards wellness!

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  • By melack01

    I’m not sure I fully understand, I’ve just been recently diagnosed. So, I can’t expect my family to understand. My husband has been very accepting through all of this so I don’t let myself get stressed about everybody else. Look for at least one person in your life who can support and understand what you’re dealing with. Then let the others take their time.

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    • By Meagan Heidelberg Moderator

      Hi Melack,
      We are so glad that your husband has been extremely supportive and accepting through this difficult time you’re going through. Please know you’re welcome here any time. Great advice!

      Meagan, MultipleSclerosis.net Team Member

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  • By Mark

    Tiffany
    Go to the Doctors.
    I really didn’t know any neurologists or even family doctors before I got MS. But I knew they knew more than I did about MS and stepped up and went to what seemed like thousands of them, probably 5-6 in reality, and though I wasn’t comfortable going, I did find ones that helped me.
    I found that I first had to understand ME and what I was going through before I could attempt to help others understand me and MS.
    It’s a rough journey and it really sucks but it can’t be done without doctors putting you on the right path.
    The rest will follow, family and friends may or may not ever understand fully but knowledge is power for you over MS.
    Its been 12 years since I was diagnosed and I’m still not sure if anyone understands what its like on a daily basis but with professional guidance it’s not as bad as going it alone.
    There are thousands of us who will talk to another with MS about MS, reach out if you need to. The times I have, have made it easier.

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  • By Chewie

    Hi! I was diagnosed two years ago with RRMS. I had no issues my first year. Once I experienced my first flare it changed my life forever. I’m so blessed to have an amazing husband that loves me unconditionally and he gets it. I’m his number one and he’s always got my back. Honestly his love and support is all that I need. My family and friends are still having a tough time understanding the disease and what it does to your body. MS is a very complex disease so I don’t fault them for not understanding it completely. All I can do is educate myself more about MS and share the things I’ve learned with them. I know they love me but their opinions on how I should take care of myself means nothing to me. I’m fighting hard everyday to be the best me that I can be. I appreciate their support but I definitely don’t need their opinions or approvals.

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  • By Ms.Diva

    My husband and 9 year old understands more than other family members who aren’t in the household. I get tired of explaining myself to them. I now give them material to read about MS. I usually figure who is really interested if they take info and read it or not. I also invite them to office visits. Yesterday I took a friend and family member with me to MS CAN DO JUMPSTART event. Hopefully they gained enough info not to ask me the same thing over and over again!

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  • By Stephanie J

    Hello everyone! I’ve have had RRMS since she 15. I went through so many doctors and embarrassing tests. Looked at like I was crazy and just making things up for 10 years. When I turned 24 my eye doctor accidentally found my disease. I finally had an answer, I have MS. The relief of knowing finally was short because now I had this huge issue to figure out. What is MS and what do I do next? The father of my two sons never understood and was cruel. Nothing I said to him changed his opinion about me. He saw me as a lazy, disabled, b**”h and he told me that everyday! After 11 years I started believing what he said! Then one day I went to the doctors and my weight had fallen from 130lbs to 104lbs! I didn’t even realize it was happening! I’m 5’8″and I looked like a Skelton! That’s when the doctor looked at me and said that until I agreed to sign papers to start the disability process they would not release me? I had just graduated from college and in the same month I’m told I can’t work! The doctor explained to me that I was so sick from depression and MS that the stress of a job could kill me…. So I made the biggest decision in that’s moment, I went home packed up my boys and what I could fit in my car with my family’s support and left! It took time but I never went back and after 5 years I finally got my weight up to 122lbs. Now it’s been 10 years and I’m happily married to a man who new me and my disease. He doesn’t see MS when he looks at me. When I’m having a bad day he just knows and no words have to be exchanged. He’s there to listen if I want to talk otherwise he just picks up the slack and I never have to feel bad about myself or guilty. I do feel that he may be more in denial of the illness because he always says that to him I don’t have MS, so there are times communication is needed but living in the world I was living in was making me almost bedridden! My parents still struggle with right and wrong In dealing with the truth but they’re coming along. I’m more 38 and if you didn’t know I had MS you’d never tell by looking at me. Stay strong and positive I learned because living the most stress free life possible is the most important thing for me! It was hard to learn how to put me and my health first because I’m a helper type of person. But I’m no good to anyone if I’m not well? I just tell myself everyday stay strong and if I’m having a bad day I say it’ll be better tomorrow!

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  • By Beannie

    Everyone knows the feeling of wanting to be somewhere but can’t make it I worry I’ll forget what I’m doing or won’t be able to find a restroom or being in the restroom the entire time making myself feel worse because my energy levels are down. Then when I try to explain to family and fr iends I’m told that I should be in a nursing home. Just don’t know what to do next. But I know I’m tired of living like this. Any suggestions. I’m on tecfadera and about to check out other options any suggestion

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    • By Lisa Emrich Moderator

      Hi Beannie,

      It can be very difficult when friends and family do not really understand what you are going through. They might feel like they’re looking out for your best interest by suggesting a nursing home or assisted living, but I’m sure that you want to stay as independent as possible. I think that talking to your neurologist about what’s going on is a good idea. If there are other treatment options or therapies that can help, it would be good to learn more. Thank you for sharing. Please know that we and the community are here for you.

      Best wishes,
      Lisa, moderator

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  • By freedomfighter

    I don’t think there has ever been a time in my life I have been confronted more by friends and family leaving. Looking back I was always the one there to help anyone and everyone else in need for something. There literally never was a mountain to high or a river to deep, dealing professionally with search and rescue operations regarding missing children abroad and talking suicidal friends of a bridge at 3 am in the morning. I got the call and I was there and more often then not, got the job done. Since I got sick, two years ago, I was abroad in Africa so a diagnose took over six months yet within six weeks I became paralyzed from the waste down with all sorts of drastic treatments of which the last one in November left me blinded. I went from full force to zero in less then six weeks and have discovered that too many if not most of the people I supported day and night before I got sick, have not even shown up for a visit or a phone call since. Family included. Some think it’s because they’re scared of being confronted with the sight of me in a wheelchair, some say these friendships always were based on one-way-streets only I was to naive to notice before. People love it when you’re always there for them to take on their battles or help them push through during hard times but when it comes down to it, they’re not capable of returning the same energy and grace you have given them over time. It seems the relationships I thought to be balanced, true, warm and loving, simply were not. They actually were not balanced. I was fulfilling my need to be there for others, my helper-syndrome and others of course accepted it since there was never a price to pay for my kindness. It was my own belief-system that kept me in my blind spot for so long and MS was a harsh and cruel wake-up call, not just physically. Right now, there is no one left besides my beautiful son and my eighty year old dad who practiced meds his entire life and has the emphatic level of a true hero. The way I see it, my backyard has been cleaned almost organically. It now has a lot of new space for real people, true friendships and honest caring relationships. All I have to do is open the door and let them in. I believe they’re out there some where, I just need to find myself a jar of energy to take a few steps outside my comfort zone and open up the door. MS and stress is a very very bad combination and if there is any advice I can give you, and myself for that matter, if people do not understand, are not willing to Google what MS is and means on their own to build up a friendship or keep it intact, they’re probably not really your friends to begin with. So the best thing you can do for yourself is to let them go. However hard and cruel that sounds, you need people around you who love and respect you and you need to start becoming selfish to your own needs right now. It is a big deal to figure out what your needs are under normal circumstances, this battle makes normal seem like a walk in the park. No day will go by predictable or the same then the day before and the only way to minimize extra damage and with that, extra hardship, is to take control of the only thing you have control over; the people you spend your precious time and energy with. You simply do not have the luxury to fight silly fights about silly things with silly people unwilling to see you, and I mean really see you. The only way, and I’m not quite there yet so please correct me if I’m wrong, to get any kind of quality of life back, is to focus your quality time with quality people and avoid, kick out or unanswered the ones who do not fall in that catagory. Of course there’s a learning curve for friends and family to when it comes to accepting this MS dragon but if they’re not even willing to go the distance to learn simple well known facts the internet can provide them with, don’t waste anymore breath, move on.
    I know how hard it is, I find myself alone most days without a clue how to move forward and I am trying my best to stay positive and listen to things to make me laugh or look up information how to deal with emotions that overwhelm me on a daily basis. Just when I feel I’m on the right track to zen, I get kicked to the floor again by bad news or financial stress due to not being able to work in two years and provide for my son and myself. We have lost everything but each other yet somehow I have to believe there is a reason for all of it, for all the pain, all the pushing through, all the ‘not giving up’. I’m not sure what that reason is but what I do know is, I’m a good person and karma usually is a bitch and this ain’t my Karma so good must come from this somehow some way.
    Hopefully that is true for all of us here, experiencing the monster that should have stayed in the closet, but didn’t.
    Hope this helps in any way, even if for only a moment. Stay strong and start being selfish! XOXOXO

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