Worst thing

I think the worst thing about having ms is none of my family & friends understanding . Assuming I'm faking because I don't let them see me sad or in pain I've been hiding it well I'm

21 Replies

  • I"m so sorry, I completely understand. It is a very lonely disease and so very difficult when the symptons are "invisible." Stay strong:) . xo

  • I know what you mean but it might be time for them to see the pain you go through I think when my brother in law saw my husband his brother have to pick me up and get me in to the living room. He saw how bad life can be for me. At that point the gloves were off if you knew what I mean.

  • ssdw1958 is right, let them see the pain! Get pamphlets or booklets from MSAA to give to family and friends, Jesmcd2 or Tutu should be able to give you the number to call and get something, so you can help them understand. You can only give them the information you can't make them believe it. Sorry.

  • Thanks they have pamphlets & my dr gave them a informative DVD . I think it's hard because it is a invisible disease . With the heat this summer I've had to miss a lot of family functions Because of the heat , because when it's extremely hot It only takes 10 mins for me to feel

    Like I have heat stroke

  • The heat is the worst! It's like your body don't wanna move!

  • Yes ... my grandson says I'm like a vampire .... lol I only come out after the sun goes down

  • LOL!

  • Chevy_mama, Morllyn had a good suggestion. My neuro recommended my family members view the Can Do MS webinars. Their archived ones are good too. They have one coming up in Oct on the hidden pain and depression in MS (I just saw this and will post it as well):


    Here is the MSAA number: 800-532-7667

  • I'm in Ontario Canada & my dr gave me dvd's that are little stories helping them understand . But thank you 😊

  • It sounds like you have a supportive doctor. That is a blessing-not everyone is so fortunate. Now if everyone else can realize what you're going through and how you truly feel...

  • You know it is hard to have the correct wording what you are going thru. I had gone to a Family get together and I had asked if it was handicap assessable my sister in law wasn't sure well don't you think they would have checked it out. I had gone over there house and they saw how hard it was for me to get up five steps. I had called the place they said it was (the first floor was)so i went. it was not handicap accessible and my husband and son had to basically carry me up the stairs. No fun at all I think if the place is not accessible I am not going. You have to realize it was one of those old buildings in Portland Maine that is grandfather in which means they don't have to have an elevator.

  • ssdw1958 I have a multi handicapped daughter, in a wheelchair. The last two times she was in a hospital a nurse came in and said they needed to get her weight. She sat a regular scale on the floor. I said that I would have to lift her and both of us get on the scale, record the weight then put her back on the bed, then weigh myself and subtract my weigh to get hers. She said, "Can't she just stand on the scale?" I explained that she wasn't able to stand. She then said, "But it will only be for a few seconds." I told her that if I put her on the scale and let loose she would fall to the floor right away, that she had never stood before. She left in a huff!

    I tell you this to show that even though my daughter came in in a wheelchair, has tiny little legs and she watched me have to lift her into the bed, she obviously didn't understand and when I explained that she could not stand she still either didn't get it or was unwilling to believe that my daughter could not stand on the scale.

    If you are asked to go someplace again ask specifically, if there are any stairs anywhere that you may need to go while there (like the bathroom), what floor it is on and if there is a working elevator, are there any obstacles that a wheelchair cannot get over, etc. I don't think you said you were in a wheelchair but if you have a problem walking it could be the same.

    Some people do not understand, they have to see you struggle before the light goes on. That does not mean they do not care, it is just hard for them to understand because, this is an invisible disease.

    Sorry for the rant!

  • Thanks but you know I know the people who will read it and the ones that won't the ones that won't think they know everything but they have know clue.

  • I'M IN THE SAME BOAT so move over sister... LOL My sister has gotten so frustrated she has screamed at me TWICE so I've been effectively silenced... I'm ok with it I guess as I lived with a man for 15 years who silenced me as well... When I finally started SPEAKING UP, he left me... Good riddance to BAD TRASH!!! Now I live alone which I LOVE!!! Good luck darlin'... xo Cj

  • I totally understand. Even though I've only had ms dx for 5 months it's still hard not being believed by family or friends. They see you looking like you did and not understanding that you may look the same but don't feel the same. They don't understand why you can't walk without a cane or stand without holding on to something or just fall on level ground for no reason. If I mention a new symptom I hear the old I just can't believe you are progressing so fast like I can control what's happening to me. Or the MRI said there were no new lesions. I don't care what MRI says my walking and my balance is getting worse. My memory and thinking is getting worse. I'm not acting dumb on purpose. But if they can't see it they can't believe it. And one of my favorites every time I mention something I hear. That I better be especially good to them cause the rate your going your gonna need me. Every time I fall it's because I'm clumsy not because I have ms and can't help it. And especially the fatigue. You can't be that tired all the time you're just being lazy. I only wish. I've learned a lot in 5 months. I can't even imagine what yiuve gone thru in years of this disease. I pray for everyone with this affliction to have support. That's what I love about this site we give each other the love encouragement and support we need because we live this monster everyday. Here when we talk it's to someone who truly understands our problems. I've complained enough. Hope you all have a blessed day.


  • Awww yes Donnie in the first year of a diagnosis it's always hard . I remember when I found out .. I cried ... & went into a depressive state . I had got my dream job & was security for the casino & it was the best job . But a year after working there I was a single mom & working crazy hours . So I was suffering from vertigo really bad , I went to my family dr and he told me it was because of all the hours I was putting in at work , but it got worse & worse . I went back to him & he told me I was making things up pretty much . I felt like I was going crazy , the vertigo , the exhaustion & the over all lack of everything . I asked for a dr's note & he told me I was fine to work . So i went in & I got off at 4 am .. driving home on the hiway & I crashed my car . I don't know what happened I just know I woke up in the hospital .the wrong doctor asked how I had been feeling , I explained the vertigo & exhaustion & headaches . He sent me for a MRI where they found 5 lesions . He then says i am pretty sure you have ms . I was like what !?? Wtf?? How ?? And now years later here I am living my new normal life

  • Wow. Sounds l like a horror story. So sorry. Dr never seem to listen till something as happens. I just got up April 131st and was dizzy and weak. My wife and i left home going I the funeral of a friend who had a stroke. I pulled over and asked her to drive because was so dizzy and I could hardly use my left arm. So she automatically though t I was having a stroke and took me to emergency room. Next thing I was in a room hooked up to oh steroids waiting for MRI. Took 3 tried to get MRI because they didn't believe me when I told them I could stay in that tube for 3 to 4 he's without sedation. The 3 rd time they sedated me. Lol. 5 days of steroids and MRI they diagnosed me with ADEM and sent me home. Soon as I saw a msneurologist he told me it wasn't ADEM because I had lots of old lesions and recommended we star treatment immediately. So since then I've had 4 new brain lesions. But MRI a month ago had no new lesions. So hopefully the Plegridy is doing it's job but it don't help the damage already done or the symptoms that I keep getting. Sport for the lengthy essay but I'm sitting in the bank waiting to open a checking acct and I'm bored. Have a wonderful day.


  • Donnie I'm so glad you got stuff figured out ... be safe

  • I want to tell you lady something I went to my doctor from us 10 years saying there is something wrong with me and his response was oh it's women problems oh I didn't know tripping and being so tired was woman's problems. Guess what I had to diagnose myself so I went into the doctors office with my Reader's Digest Medical Book and said I need either have MS or lime disease and his response was don't jump to conclusions. Like I want to have either of these. So I had an MRI guess what I had like 30 lesions that stupid blankety-blank. I change that Dr. got another doctor, I got a neurologist that said to me you probably had this disease for 20 years now if that SOB had listened to me I probably wouldn't be this far along with this disease My word to everyone if your doctors or doctors are not listening to you throw them away and get another one. Ok I feel better I got that off my chest. Oh yea one more thing watch it when you tell work because stupid me went and told them WRONG the new team wanted me out well I lasted there for seven years in Astsa la vista baby they one I lost People seem to think when you go out on a disability you make Mucho money not true.

    Just watch your back but speak up for your self when it is needed

    Have a great day everyone 👍😎

  • Thx

  • Wow, amazing reading others adventures with MS. I just finished my first year of MS and share many of the same experiences. I think I am still in some sort of state of denial. Reading about all possible treatments. I would just add that we are all blessed that we found this site and others sharing all these symptoms.. I don't say much about family yet, so this will be my coming out so to speak.. My husband who really is the love of my life, a fantastic man and awesome caregiver, sometimes forgets I have a working brain and can do the shopping by myself now that I can finally drive. He's gotten over protective and I need my wings back..I'm working on it. My youngest daughter, age 42 with an IQ off the charts, just calls it my neurological condition, Oh, by the way she is a psychiatrist & a neurologist! My other daughter, age 51, was an RN before she became totally disabled by arthritis, Well she has only seen me once since diagnosis, we live on opposite coasts, she thinks I have Alzheimer's. Talk about a lonely disease, you really find out who your true friends are when you get this diagnosis. My true friends circle has reduced from 50ish to under 10, but they are a wonderful 10! Blessings to all my dear friend here on this site! You all mean allot to me!

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