Please, Tell Me Again How I’m NOT Disabled

Please, Tell Me Again How I’m NOT Disabled

Multiple Sclerosis is frustrating in so many different ways; both physically and emotionally. Many of us diagnosed with this disease cannot do the things we once could and can no longer pursue the life we once wanted. That is a horrible emotional set of pain in and of itself. It gets even more frustrating. Many of us cannot communicate to our friends and family what it is like to live with MS. It can be a rather invisible disease; can you see how I can’t see? How my nerves are on fire? How I can’t think or how I feel so exhausted for no reason at all? No, I didn’t think so. In the middle of one of my worst relapses ever I can sit at a table across from you, sip some coffee and talk about politics yet you would never guess there was anything wrong with me! I look just fine! I look healthy even though I feel like crap. This is a major issue for people with MS and is the number one cause of my emotional distress. I hate admitting it but yes, I am disabled, definitely not as bad as others, but by definition, I still am and this disability makes life so difficult.

As if that was not bad enough it still gets more frustrating! I mentioned that many of us cannot communicate what living with MS is really like to our friends and family. I can be really good with words and still I find at times that I just want to collapse and shout at the top of my lungs when I try to explain how I feel, how I feel when I do not even fully understand myself! But I have learned to let go of that to avoid the stress of growing frustrated. Some people get it and some people do not. People are not born with empathy, it is a skill that must be learned and mastered. In order to feel true sympathy you must have gone through something so similar that you can honestly know in your heart how someone feels. Not many people in day to day life know how to be empathetic or sympathetic so I just let it go. It is not that easy but it is that simple. Here is the problem; your friends and family? They are not the only ones you have to explain how you feel to are they?

The legal system. Well, the Social Security Administration in particular. My “favorite” least-administrating administration in the US of A… Sorry, I have to be careful here, I am trying to not let my anger hinder my ability to be objective. You see I don’t want to say “the SSA is a broken system that doesn’t really do anything to help a good majority of people living with MS maintain some sort of quality of life making a lot of us wish we never even had anything to do with them in the first place” because that would describe them perfectly. No I can’t say that because though it is a far from perfect system it has in fact helped people with MS. Here is the frustrating part. Knowing you are disabled, knowing you want to work but can’t because of your disability and being told you are not disabled. “You look fine to me so go get a job you moocher”. Yes, I get it, I have “Relapsing Remitting Multiple Sclerosis” and when you type that into your fancy government computer it gets all confused and denies people for benefits because if you have a relapsing remitting disease than obviously you are not disabled all the time but only part of the time. So obviously you can work when you are not relapsing! But how realistic is it to think you can hold down a career, a job, when every few days, weeks or months you need some time off because your symptoms are flaring? Oh yeah, since when did relapsing remitting mean when you are “in remission” you have zero symptoms? At my best I still feel like crap!

I really do want independence. I really do just want to be another contributing member of society who blends in with the crowd but that is not the hand I was dealt. After 5 years of living with this disease I still have no idea how to really explain to people or the government that I can’t do as much as I look like I can. I wish I turned green depending on how ill I was because people believe what they see and maybe then it would be easier for people to understand and not treat me like I am full of crap just looking for a hand out. I would love some empathy, even some sympathy, but I never want pity. Not ever. I may not look disabled nor do I like to consider myself disabled but don’t try to hide the fact that I am expected to climb the mountain we call life just as easily (with 200 extra pounds on my back) as everyone else because that is just not realistic. Unless you have walked a mile in my shoes don’t tell me “you are fine”.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (49)
  • trloftus
    3 years ago

    My feelings exactly! You stated it very well. People really can’t understand until they walk in my shoes, but I would never wish that on anyone.

  • Matt Allen G author
    3 years ago

    Exactly so more than likely, they will never truly understand, frustrating

  • fedupandconfused
    3 years ago

    Matt that is BRILLIANT. Like you I can find all the words in the world when I am typing on here or via emails and Facebook yet I can’t explain all the disabling symptoms of MS when someone asks me, I just go blank or stumble to explain the different ways it takes affect. We are proud people and don’t want sympathy so we try carry on as normal and that I reckon is our undoing because then people think we are OK and they don’t understand how bad it can really feel every day. And don’t get me started about disability pension and how government departments treat MS patients. I live in Australia and the way I’ve been treated (and fellow MS patients) is just short of third world. We are seen as spongers, dole bludgers and good for nothings and after 2 years of being out of work I have not been able to claim a single dollar. I am 52 years of age, have never claimed anything in my life and have a Masters degree so clearly to not be able to use my skills means there is a reason! Who in their right mind would want this life yet when I need the help I get nothing and I know I am not alone. MS comes in many forms like you say and the “tick box” disability / social system doesn’t take this into account for this illness and remitting MS is actually ongoing and this makes it impossible to hold down a job when every day is a struggle to just get up and move around. Thanks for the insight it is so helpful to know I’m not alone and struggling to verbalise how I feel is actually normal for us. Thank you for sharing – it’s really appreciated.

  • Michelle
    3 years ago

    I was diagnosed a year and a half ago with relapsing remitting, I had been suffering from weird symptoms for years. I suffered pain through my body, random numbness, bladder incont. As well as extreme exhaustion. Everyone looks at me and has actually said “you look fine ” my example is today … I work as a nurse. It took all I had to get out of bed… Pain everywhere… Like the flu… Every muscle, every joint and I felt drugged I was so fatigued. My day consisted of fake smiles and how do you dos as I silently want to scream I hurt so bad. My hips hurt my legs feel like jello and wobbly… I almost loose it because I hurt so bad. Random cramping all over my body that last 5-10 seconds and moves to the next location. I want to scream at people when they say ” you look fine, you can’t be hurting that bad” the summer heat is just killing me… Symptoms are worse and people can’t understand I can’t hang out at the lake or bbq all day.. I start to slur my words, my legs get all weird and want to go different directions I can barely stay functional with the wave of fatigue that hits…. Yes I can understand your feelings… It’s so hard for us

  • rbtstewart@att.net
    4 years ago

    I like your article and agree with you. I was a professional baseball player when I had my first exacerbation, so I do understand what it’s like to lose a profession. But do I think others should understand my problems? When I drag or shuffle my feet or when I round a corner too sharply and run into the wall. I can’t expect others to look at me without questions, much less understand my problems. But, that’s not my problem, what others might think. I don’t need their approval anyway. My way of dealing with the things that I can’t do is to laugh at myself and just continue to do the best I can. Sure it gets frustrating sometimes and yes I’d like to be more productive. So, I try to do the things I can do. I write children’s books, pamphlets and essays. I correspond with friends by email, not with facebook etc. My MS is getting worse and it’s not something I can control so I just take one day at a time and do what I can. I hope you have good luck and wish you well.

  • linda
    4 years ago

    Sandy-Reading ur story felt so familiar to me. I was diagnosed in my twenties (I am now 54)I was an x-ray tech in a large, busy hospital. It started with headaches & blindness & alot of steroids. My job was very physical,but I was young,in denial, so I mostly wore myself out trying to prove to everyone,including me, that because I “looked good” I felt good. After 23 years of working at the same hospital in a job I enjoyed, the physical aspect became more evident. Through the years I had issues with pain,numbness,major fatigue,etc. A family friend suggested I look into SSD because I had worked hard but now I neede help. I talked to my neurologist,who was so supportive,& filled out paperwork.had test done,and with the help from my neuroligist was accepted for disability the first time I applied. “What took you so long” was the question. I don’t see myself as “disabled” which is why I suffer in silence with people sometimes because I struggle to appear “normal”-I don’t want pity-I just want understanding. In reading your story, I know there are those people who truly understand . Thank-you ☺

  • Cherise
    4 years ago

    Hello everyone. I have been reluctant to join any MS groups until now. I was diagnosed with MS in July of 2012 after thinking I was suffering from a stroke. I had a pain in my head that was only on one side of my brain and had severe numbing/tingling on the other half of my body from my upper chest including arms to my toes. After spending a week in the hospital undergoing tests and MRI’S and what not I get that incredibly devastating news. You are correct in that it’s like loosing someone or yourself. I cried and got angry and asked “why me.” I was fortunate to apply for Disability and get it but only after getting denied on two occasions and spending two years fighting the system. I think the only reason I finally was approved was because my case was heavily documented by my doctors.

    I get my care through the VA. I know there’s been a lot of negative treatment in the media but I will tell you that the VA has been very good to me.

    I decided that I didn’t want to feel like a victim and applied to law school. I am a part-time student and will be finishing my first year. It’s been tough and there are days I don’t want yo get out of bed but school doesn’t allow me to dwell or feel sorry for myself. My hope is to practice in an environmental law firm as I hope to use this disease as a teaching tool. I believe some cases of MS is from environmental factors and if I can leave this earth a better place for my kids and grandkids I will feel it’s well worth the daily fight.

    I will also tell you that I was diagnosed at age 40 and feel grateful that at this time I am mobile and self sufficient. I know we all experience this disease in different ways and hope that we all will make a contributing impact on future generations thoughts of what is considered a silent disease and as such will maybe teach others that just because you don’t see it, it doesn’t mean it’s not there.

    Good luck everyone.

  • Sandy
    4 years ago

    Well said Matt! Anyone with MS has suffered multiple losses. I am now a “retired” RN. Mostpeople that I meet that is the only information they get. You have to be around awhile before you get much more of my story. “Retired” nurse, that is so much easier to slip by them than disabled nurse. In-fact I don’t think I have EVER said disabled nurse. Even after being diagnosed 23 years ago I still contend with denial. Denial is not the best coping strategy, but I’m not sure total acceptance is either.
    MS is such a complicated disease. There is no list of symptoms to check off and say “wa-la you have MS.” Wouldn’t that be to easy. I was diagnosed at age 24. At the time I was working night shift in a busy ER getting 50 to 60 hours a week. My first symptoms were optic neuritis where I lost sight in my R eye for about 10 days and had the worse headache ever. Sounds like a severe migraine to me. Two weeks off for a planned vacation lots of rest and pain meds and I was all better by the time I went back to work. About 2 years later when the same symptoms reoccurred I was actually diagnosed with MS. My immediate reaction was pure anger!!
    I was 24 years old, a cardiac/ER nurse and loved it. No time for MS. Interferon treatment was fairly new and most of the time I felt fine was very active and having a lot of fun too. Needless to say I did not want to start a medicine that made me feel like I had the flu every other day. I did not start taking interferon for 10 more years. I got married, had 2 children and then it was time to start treatment. Interferon here I come. It actually was not as bad as I had feared. I still chill and feel really bad 2 to 3 times a year from my injections.
    My nursing career ended March 11, 2006. I had not been feeling well for weeks. Severe headaches, lots of stress at work, then it happened. The morning of March 11th I woke up, could not get out of bed. It was like I had a stroke on the right side of my body. My 6 year old daughter had to help me dress, then my husband came home and to the hospital we went. I was admitted and took high dose steroids IV for the first time. It took
    3 to 4 months to do rehab and get sort of back to normal. My neurologist said you are a young mom, you can’t handle work and home. Stay home and raise your family, and take care of yourself so you can be there for them. So with lots of help from friends and family we made the 6 month wait for the disability to be approved. I would encourage anyone in the middle of that process to be very involved. The dead line day for all my medical records came and the disability office had received NO records. I got my mom to drive me to the hospital I went to the medical records department and waited until they copied ALL my records. I went to the neurologist office I waited got those records. Then my mother dove us to the nearest SS disability office and hand delivered everything. The office closes at 4:30. I got there at 4:00. Talk about a long, frustrating scary day. Just be involved in your care. We really are just a number in some aspects of care. Other than that the whole disability process went fairly well. I walked into the SS disability office, the lady reviewed everything and said, “Where have you been all these years.”
    I said working for a cardiologist, raising my children, living life.” The lady seemed astounded that I had been doing all that. I was approved.
    I need to thank my neurologist. She had documented my care well and had the fore sight to know what was coming even though I didn’t.
    I am stubborn and work really hard not to let MS rule my life. Fatigue is my biggest hurdle. I am just now beginning to realize that others around me are not so tired they can’t finish a task. You mean it’s not normal to need a nap at the scenic lookout on the way home even though it’s only 10 more miles. Another thing doesn’t everyone go lay down as soon as the kids get home school? It’s just an hour or two of rest before making dinner. I always say, “if I ever quit, that’s all I’ll be able to do is quit.” That doesn’t mean I don’t take more breaks than the rest of people my age. I do what I can and the rest can wait till after my break. Yes, I’ve had many losses because of MS, but I still have a wonderful life, and I try to focus on that.

  • Matt Allen G author
    4 years ago

    Positivity is KEY and it sounds like you have it down! Being stuborn doesn’t hut either haha

  • patmaz
    4 years ago

    Dear Matt, I can so relate to your article. I have had RRMS for 27+ years now and filed for disability in 2011, w/o a lawyer. All my friends were stunned when I was denied. I got a lawyer – recommended by the local MS society – and was denied again. I fired them and hired another firm and this is my last shot. Meanwhile I took early SS at 62 and retired last year. I have great friends but it’s discouraging when they ask me to do things I can’t do, or do them anyway knowing I’ll feel lousy afterwards. And the hits keep coming. I was diagnosed last year w/Celiac and this year w/osteopenia. My friends tell me I need to complain more @ the doctor to get him on my side, keep a journal of my pain every day,etc. My physical therapist thinks I have good days and bad days. No, every day I hurt, am tired, and can’t do things I used to do. There aren’t enough hours in the day to write down every time I lose my balance, stumble, or hurt somewhere. And driving is harder and harder. It’s really frustrating but I’m too stubborn to give up. You keep going, Matt. I’ll do the same.

  • Matt Allen G author
    4 years ago

    Yeah “good days and bad days”? More like bad days and worse days. Seems like a LOT of people have trouble getting SSI or SSDI and what is tough is I am only 24/25 so it’s not like I have savings or early retirement to fall on…. Ugh…. But as you said, just got to keep going or else NOTHING will change.

  • nama
    4 years ago

    this artical is best and informative.

  • nama
    4 years ago

    hi! i m new here and join this community because of my lovely brother who diagnosed ppms.i m much worried about his health.i want guid lines how we treat him.he has problem in walking day by day this weakness is going worst.his age is 29.i wish any one discover treatment of ppms.

  • Matt Allen G author
    4 years ago

    They are still looking but nothing seems to work well enough for insurance to cover anything but I don’t know enough about it so don’t take my word for it!

  • rbev00
    4 years ago

    Best article I’ve read so far couldn’t have said it like you!!

  • Matt Allen G author
    4 years ago

    Thanks :^D

  • linda
    4 years ago

    Thank you Julie for putting a visual on how you feel sometimes-having sandbags all over your body & moving is a definate visual that I feel alot. Most people say ” I know how you feel” so it is nice to know that there are people who actually do know ☺

  • JULIE SAVENE
    4 years ago

    My pat answer is ‘just hanging in there”! I too get the how are you doing today question, but I work at a health department & most of the people know of my diagnoses (14 years ago)and have seen my progression downhill the last 3 years (cane to walker & sometimes a wheelchair[it is a loooong building]). So I don’t have to explain alot at work, but when my husband or mom(84) take me out I am constantly telling nay-sayers that it was not a’Stroke’ or ‘Knee Surgery’ that causes me to walk funny or need a scooter in the market, but MS. I came up with a good ‘visual’ for my fatigue–it feels like I have small sand bags all over my body & am trying to move with them on!
    I had to give up driving 2 years ago and now am considering disability retirement but the people here are so understanding???

  • Matt Allen G author
    4 years ago

    I feel like I need to bring pamphlets about MS around everywhere I go as I do not work around medically educated people..

  • Applehead
    4 years ago

    Hi Matt Sorry about what you are going thru. My husbands favourite mantra is “calm down.” Recently I was uninvited for a trip to Greece because I might trip on the cobble stones and there is a lot of walking.
    The whole thing was planned secretively and I was not given “the choice.” I am very disturbed by all this. My husband is a cancer survivor and is in trouble on his opiates. I am not suppose to express frustration and anger but be a real trooper. So, now I am reflecting on my current relationships. Yes I have PPMS but do ambulate well. How many other users are in such relationships who essentially abandon us or find us too much work?

  • MArroyo
    4 years ago

    Most people with MS have met (or God forbid) lived with people who find us too much trouble or say that we’ll slow them down if we go along. But if we look we will find those people (some already in your life) who are happy to have our company. And if not, you enjoy your travels at your own pace alone! I’ve done it and it’s wonderful. If I were you, I’d plan my own FABULOUS Greek vacation and send them a postcard or better yet selfies from your favorite spots.
    As another commenter said: If we don’t travel, “the terrorists will have won”.

  • Matt Allen G author
    4 years ago

    Well, I was only 20 when I was diagnosed but it was not long after that my girlfriend (at the time) broke up. We were on and off for years, just could not make it work, so I suppose we were not right for each other. It’s hard to WANT to date because I don’t WANT to put anyone threw this but it would be nice to meet someone who was in it for the long hall but fro9m what I see in others with MS, they are far and few between….

  • Betty Bre
    4 years ago

    Well, I searched out this forum today because I was feeling irritated by an encounter I had at a consignment store this afternoon. I’ve been diagnosed with MS for over 20 yrs. and have used a walker for 3-4 yrs and a scooter for 1 yr. to get around. So I am far from “looking good.” I’d prefer to blend in, but…. Today I was quietly and carefully moving about the store when I needed to lift my walker wheels over a lamp base. As I did, my bag slipped off the seat (duh me) and plopped onto the floor. As I was completing my ‘lamp maneuver’, someone behind me loudly said, Oh! You dropped your bag.” I did not immediately freeze to attend to it as I was mid-maneuver. The person then, said louder, “STOP! You’re going to run over your bag!” I turned to look quizzically at the person as I stooped to retrieve my bag and he/she said in a normal tone, “Oh, I thought you were going to roll over your bag.” And this is when, for the first time ever, I deployed a pre-emptive “dear”… “No, dear,” I said mildly, “I’m fine… and fully oriented.” He/she acknowledged my statement and we parted friends.
    My irritation has to do with the people (approx. 80% of them) who see me with my walker or scooter and assume I am deaf and/or intellectually impaired. Why? It’s such a cliche. So, It’s the opposite problem I have (sort of…). How to not let my irritation show to the well-meaning other and just be a ‘good’ disabled person, when, really, I want to suggest my guardian angels keep their over reactions to themselves. #fearandignorance

  • Matt Allen G author
    4 years ago

    I have been in both boats; looking disabled (wheelchair/walker/cane and looking perfectly normal. Both have downside. Though I prefer to blend in it does come with the price of having to explain to people “yeah, I look good but feel horrible”

  • mswarriormama
    4 years ago

    I have a few come backs when I hear, “you look good!” Depending on how not good I’m feeling they range from, “I hope so because I do everything I can to not look as bad as I feel!” to “but you look so smart!” I was so sick of people making ignorant comments! I started out with a MS “specialist” who was the biggest ass I’ve ever encountered. I got him to refer me to OHSU in Oregon…I live in Nevada, family in Oregon…and they were dumbfounded as to why I hadn’t been started on any treatment and how he could even say he didn’t think I had MS!! I’m a “perfect” example of an MS patient according to them…I had symptoms…vertigo, numbness, nerve pain, and lost a lot of use of my right hand and leg…plus several obvious, large lesions, plus a “positive” spinal tap. But hey, I did my makeup before an appointment with him, so I MUST be okay! Yup…his words! I have an amazing team of doctors now who understand it affects everyone differently and it causes pain. I wish it wasn’t so difficult to find caring doctors. It’s one thing to have family and friends think you’re fine, it makes you feel insane when a doctor thinks that! Thank you for sharing and I pray all of you have more good days than bad!

  • Matt Allen G author
    4 years ago

    I had a nurse recently dispute that my vision was bad (when I emailed my DR.) because “you were on the phone when I saw you at your infusion. I said my vision was bad, that does not mean I am completely blind, are you not an MS nurse?? ugh…

  • linda
    4 years ago

    Just because emotional struggles with ms are not as visible as physical struggles, the reality of both can be very disabling. Unfortunately, most people think “disability” means you can’t “look good” or they dont understand that my ms can be very different from someone else’s-so please dont judge me on what I can or can’t do. I am sorry that anyone has to have ms, but at the same time, I am glad I am not alone !

  • Kathie
    4 years ago

    Frankie,
    Whenever your feeling bad you can say what ever you want! We all can relate to the problem. When I go into or have an exasperation, my speech is so jumbled up its not even funny! I tried to tell my husband what was happening to me and he left. Maybe in my case that was meant to be. Anyway, you are not going to be able to explain it because no one can understand what your going through. People have to be in our shoes to truly get it, it’s an awful thing to have but you keep pushing forward and try to stay positive!

  • Frankie Wickliffe
    4 years ago

    I can relate to this article completely. The thing about me is when I’m feeling really bad I go inwards and can’t speak so no one really don’t know how i feel. My husband said to me one time, “just tell me what is wrong “, and I can’t cause I feel so awful I can’t even talk about it. So he has no clue how i feel. I tried explaining to him one time and got frustrated and drove myself to the hospital and was admitted for having an exasperation. He was very upset with me for doing that but I couldn’t explain what I was experiencing. I just need someone to know when I’m really bad off because I myself don’t know how to explain it, it is just terrible. Thanks for sharing.

  • Matt Allen G author
    4 years ago

    Ironically, despite my writing, I sometimes have issues opening up to people in my life; I have worked on it and got better but I understand.

  • Theater Geek
    4 years ago

    It is definitely frustrating!! I got lucky and ended up with a really really good MS specialist and knows what it’s like. And my OB/GYN knows as well because his mom has MS so he sees it. The other really annoying thing is when you have family that has a friend with MS as well. An aunt said to me once “Oh my best friend has MS but she can still work 40 hours a week…why can’t you?” I had to explain the whole MS is different for every person thing to her. At least she hasn’t said anything like that again.

  • Matt Allen G author
    4 years ago

    I have to explain that “WE ARE ALL DIFFERENT” to other MS patients! It drives me insane!

  • Sovereign1962
    4 years ago

    Matt, once again you have spoken my truth. The challenge to maintain integrity, not use MS as an emotional leverage but express the powerful personal reality of subtle to insane physical – emotional gawd dang living in the ms body – yup you wrote it. It is frustratingly impossible to share with those who do not live it. Why would we anyhow. But I do want people to understand. To see how strong I am under the constant reality ( less or more, debilitated or blessed be able to dance for a while). Anyhow Matt thank you, thank you again – again. Chris in Victoria bc

  • linda
    4 years ago

    Thank you for your candid words on having MS.I know you really do know how I feel. I have had MS for 20 yrs & still have issues with “you look good “. Because I am not in a wheelchair does not mean I don’t have limitations-I don’t know from day 2 day if I will have a bad day or a worse day .I am not lazy & dont want pity, I just want to know that there are people like you that truly understand MS is physical,emotional, & unpredictable

  • Matt Allen G author
    4 years ago

    I completely agree, If you were sitting across from me at the table you would have no clue that I can’t see straight, think clearly, that I am trying to really articulate my words so I don’t slur, that I am in pain and so on. I have learned to always smile because I do not want pity either, just empathy but most people can’t really empathize.

  • Lynn A.
    4 years ago

    When someone says, “That’s funny, you don’t look disabled,” I want to reply, “That’s funny, you don’t look stupid.” That’s when they question why I have a handicap license plate. I have resisted the temptation so far, but it’s been hard.

  • Matt Allen G author
    4 years ago

    haha yeah, same here but one of these days… I will be in a bad mood haha….

  • linda
    4 years ago

    Lynn, after dealing with MS for 20yrs, I am still amazed at peoples ignorance because “you look good”-If only they could understand for one day what I have known for 20 yrs,the world would be a smarter place !

  • Kathie
    4 years ago

    Dear Matt,
    I loved reading your story because it’s so very true. I was diagnosed with MS twelve years ago. People think we look fine on the outside, but no one sees the pain and anguish that we feel. I now have secondary progressive MS and it’s hard. I also have Crohn’s disease with an illeostomy bag. I have been on Disability for a long time, it’s so hard for me to do the things I used to do, oh but everything I feel is on the inside so people think we are the picture of health. I used to believe in marriage, my husband left because the MS has effected me in ways that he didn’t like! How someone could be so close and know how this illness can effect us is beyond me. I get so exhausted very quickly, if I do to much the pain is incredible. I have to stick myself with a needle every night but no one sees that, I know I’m going on about this subject but I just wanted you to know that you hit the nail right on the head!
    Jaime, you hang in there! I can’t say it gets better, but life has to go on, we have to make life go on even if it sucks! Like Matt said, this is the hand we were dealt. Try to make the best of a really bad situation! That’s what I try to do.

  • Matt Allen G author
    4 years ago

    No one sees, understands and some people just do not believe. And yeah, I have seen so many relationships fall apart, makes me sad….

  • Jamie R.
    4 years ago

    I went on short term disability for the second time in 2014 last August and was finally diagnosed with relapsing remitting MS in November 2014 after numerous diagnosis for other conditions along with all the different meds for these conditions. I have now transitioned onto long term disability insurance through work and have applied for SSDI(I do have the support of my neurologist).

    Out of the approximately 4 months between the first time I was out of work due to disability beginning of January-mid-April, I still missed 4 weeks of work before I went out again the end of August. I was unable to return to work. The first symptom that actually sent me to the neurologist was the entire right side of my face went numb. This was the beginning of August and I continued to try and do my job that was extremely physical.

    I have had family members say I look so good, and they ask why I am not working. It is hard to get some people to understand how not all of the symptoms of MS are visible. I try my best not to show how much pain I am in and it took my having new lesions in my spine that were causing MS hugs to talk to my neurologist about my occasional use of vicodin given to me by my PCP for facial nerve pain. My speech gets slurred when I am overtired, I get dizzy and when walking I tend to concentrate more on how I am walking and not where I am walking to and trying to explain fatigue tires me out! lol These are only a few of the symptoms I experience on a regular basis from MS and doesn’t include side effects from medications.

    I have done my best to educate myself about MS and how it may affect me and how to treat it. I pass along this information to friends, family, my insurance agent and my lawyer and perhaps I have overwhelmed them with what I have learned, but I think it is to my benefit to have them at least have an inkling as to what I go through.

    I really wish I could work. I miss it! I have realized that I cannot and I have had to make a lot of adjustments in my life. I am still working on figuring out a new routine for myself that doesn’t revolve around getting ready for work and coming home afterwards. Since the end of August I have concentrated on doctor appointment, medications and resting. Things are slowly coming together regarding treatment and my next focus is on starting to exercise and improve my diet which I hope will help with the fatigue.

    I was just told that I was looking good by my Primary care doctor yesterday. I did thank him and he does support my applying for SSDI, but I think he is the next person I need to educate a bit more with what I have learned about living with MS. Perhaps by letting him know that it doesn’t necessarily feel like a compliment when what is going on inside my central nervous system is mainly invisible and causing me pain I don’t normally share with everyone I meet, that it will make him more sensitive to other patients with invisible symptoms.

  • Matt Allen G author
    4 years ago

    I miss work as well; independence. I hate that everyone says “but you look good” which I often say “Yeah, I know, I wish I FELT as good as I look though!”

  • Matt Allen G author
    4 years ago

    People believe what they see unfortunately… Even when we can put our suffering into words. I miss working as well. I DONT WANT SSI but I NEED it because I CAN’T work. But I LOOK like I can… When a healthcare “professional” does not understand, that make me angry, so I enjoy speaking to medical students in hope of helping them understand.

  • rslattum
    4 years ago

    Mark-
    Thank you for sharing. I’m a newly retired teacher. I was diagnosed with MS a year 1/2 ago. My neurologist said “You’ve got MS, but it’s not a big deal.” Upon meeting my Avonex nurse, she made it very clear that I was NOT disabled. I believed them and kept telling myself ‘it’s not a big deal.’ I’m not sure when it fully hit me that yes, this is a big deal. I went back to teaching last fall and almost made it through the first trimester. I got the reasonable accommodations, and gave it a go. Long story short, my early disability retirement became effective early this month. While I am thankful for that, it’s not nearly enough to help get our four children through college so I’m going to have to find other part-time employment. Since I’m not disabled I should be able to find something. I can’t drive much anymore, my cognitive delays are driving me nuts, my legs and feet haven’t stopped tingling for months, I use a cane, vertigo can strike at any moment and brings me to the floor instantly, but I look great! I know that another opportunity is out there, but this frickin’ disease sure limits us. It helps tremendously to have this sounding board to share with others and I’m frequently amazed to find out how much we are all on the same page as we learn more about creating our “new reality”. People keep saying that great progress is being made toward MS treatments. I hope so, because it is a big deal.

  • Matt Allen G author
    4 years ago

    It WASN’T a big deal for me AT FIRST but now? Now EVERY DAY seems to be a struggle. I don’t know how to start a life yet because Uncle Sam won’t help. YAY, on my own!

  • Gordy
    4 years ago

    Spot on, Mark. The frustration is endless. Widespread ignorance extends to my own family, friends and even my GP, who totally failed to diagnose until I got myself referred to a Neurologist.
    Even my Neurologist specialised in Epilepsy, not MS.
    It would be too easy to nurture a resentful anger, but that is no help in moving forward.
    My life and world was turned upside down, and I don’t think I ever felt so isolated.
    When I was still working, walking with the aid of two sticks, the amount of compliments “You’re looking well though”, was heartbreaking.
    But we grit our teeth and carry on.
    It’s only on sites like this that I stop feeling so alienated due to the “illness that isn’t” – well, it isn’t, after all – Illnesses have cures.
    I just keep an eye on all reports of hopeful research and pray for a cure one day.

  • Matt Allen G author
    4 years ago

    “You look so good” “well I wish I FELT as good…”

  • fedupandconfused
    4 years ago

    Excellent write up Mark – that’s exactly how I feel. Mostly I’ve learned to hide how I feel, hide the pain, stop explaining myself and when asked how I am I’ve learned to smile and say “yeh good”. Let’s face it people don’t REALLY want to know when you feel lousy as they can’t handle it and only want good news. Sometimes MS like other non visible illnesses is a curse and one you learn to live with alone – even some Neuro’s and Dr’s don’t *get* it so how can we expect friends, family and strangers to understand. Recently my Neuro and Dr said it’s not a painful disease – so what hope have I got explaining it to those outside the medical field if this is the sort of ignorance and arrogance shown by some Dr’s. I’ve even been judged by someone with an illness who believed their illness is worse yet they can work so why can’t I. Like it’s some kind of contest for whose the most worthy due to being ill and able to work. Crazy world we live in – sometimes it’s easier to just keep quiet and carry the burden alone. Anyway thanks for sharing Mark it’s much appreciated.

  • Matt Allen G author
    4 years ago

    Yeah, SMILE AND NOD, that is a NECESSARY skill to have with MS it seems… And THAT is why I never compare illnesses, pain is relevant to the individual…
    -MATT

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