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    People who think you're not really sick

    I have ran into several people who have the most disgusting attitude when it comes to illness. Unfortunately some of these people are in my close circles, so to speak.

    Im having a mentally hard time dealing with their attitude. It comes up every now and then. How on Earth can I make these people understand that I really feel sick and incapacitated often? There are so many symptoms and problems that don't show on the outside.

    Essentially, these people think that one is faking illness or talking about the illness in order to take some advantage.

    In theory, I understand the point, this might happen to anyone of us some time. But from the perspective of a person with a handicap, say ms, this attitude towards people with illnesses is unbearable! I really don't feel I'm trying to take an advantage from the fact that I am sick, at least not in 90% of the situations ( the 10% I will accept as human).

    To make this more concrete:

    - my mother thinks people who receive disability benefits are not really disabled to the most part; they just don't want to work and they just have managed to fool the system

    - one of my bosses thinks that a worker who takes a day off due to sickness is (usually) just being lazy

    - the father of my child (my ex) thinks that when I ask him to take care of the child next week/tomorrow evening/later the day because I am feeling sick, I am not really sick, just playing it, in order to get some child free time. He has this doubt even though I would take time to tell him everything in detail: that I am nauseous, fatigued and feel funny in the eyes, will call doctor x and possibly try to go to the emergency, to get evaluated for the steroids etc.

    Last time this happened he was really aggressive again and texted: "you are just using your illness to bounce me around."

    - all of these people believe that depression is just something that people fake because it suits them

    I would rather kick this kind of people out of my life now. But it's not really possible, as they are closely involved in my life :-( I feel bad enough with my health and other problems already. These people are making me feel so much more miserable.

    It is true there are probably often situtions where one could be more courageous, more active, try harder, be more positive, just get up and go and do it. But where is the limit? The limit is there where you just are too tired to do any of these things. How do we know that one has reached one's limits? You just have to rely on your subjective feeling of tiredness. Isn't it so? Please tell me.

    The objective measure comes in with the formal approval of disability, or sickness leave, for example. But, as I said, these people I'm speaking about don't acknowledge even these authorities.

    Yes, as I said, if I could, I would stay away from these kind of people. Unfortunately I am not only involved but also in various respects DEPENDENT on them. Call it a living hell.

    #2
    I wish I had an easy answer for you. I get that a lot too... I wish there was a way to show people what you're feeling...

    Comment


      #3
      It is times like this when it would be helpful to have a copy of your MRI screen printed on your shirt with all of your lesions circled. Maybe then they could figure out that yes it is all in your head - in black and white.

      I think some people will never understand - maybe they whine over every little thing or look for opportunities to be "lazy" and that is why they think others are that way.

      There is no way to prove how bad you are feeling. It does not help when people make you feel guilty for being sick or blame you for becoming ill. We just have to keep explaining things and hope that at some point it clicks or avoid people like that altogether.

      Comment


        #4
        How awful that this is happening to you. It is unfortunate that there are liars and cheats who do try to work the system and then ruin it for the truly handicapped.

        I don't really have an answer for you - but know that you do have support here. It can be difficult for others to understand something that they can't physically see with their own eyes and there is not alot that can be done to change that.

        Have your doctor write a "note" for your ex when you are "sick", if that helps? Or, if instead of just asking for extra help from your ex, tell him you aren't feeling well and need some help, and that you would be happy to swap out the days/times that he has the kids to make up for it ?

        Good luck.

        Comment


          #5
          Someone posted this on my Facebook page:



          You Don't Look Sick!

          It's hard to explain to someone when they have no clue.

          It's a daily struggle struggle feeling sick on the inside while you look fine on the outside.

          You or someone you now has an invisible illness: Anxiety, Bi-Polar, Fibromyalgia, Lupus, MS, Chrons, Diabetes, Arthritus, Epilepsy, Depression, PTSD, Thyroid disorders, etc.




          People who need to read it won't believe it, unfortunately. It made me feel better, though.
          As far as possible without surrender, be on good terms with all persons.

          Comment


            #6
            You aren't going to change anyone's mind so it's probably not worth the trouble. We all make judgements in our minds and most people will never change. I would spend less time worrying about what others think and more time focusing on getting better and doing your best to be your best. I know it's difficult when you can't just cut those people out of your life, but again, they don't seem all that interested in understanding so you have to put your best foot forward.

            Comment


              #7
              I am so sorry you are having to deal with these insensitive people in your life. Maybe it's time to gather as much information as you can to share with them. Seems like this would be the best ammunition for the battles ahead. The NMSS has tons of printed material - free for your use. Good luck and stay strong... you have friends here and are not alone!!
              1st sx '89 Dx '99 w/RRMS - SP since 2010
              Administrator Message Boards/Moderator

              Comment


                #8
                How MS Feels

                Here is something I picked up from a previous message post to give to people to help them understand "How MS Feels".

                When We Say We Can't do Something Because We don't feel Well, put yourself in Our Shoes By Using The Examples of our Symptoms Below...

                - Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how ya' feeling now?

                - Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.

                - Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.

                - Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won't fall down.

                - TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.

                - Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.

                - Tingling: Stick your finger in an electrical socket - preferably wet.

                - Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya' breathing?

                - Shots: Fill one of our spare needles with saline solution, saline won't hurt you, we would love something worse but don't want to end up in jail. Give yourself a shot everytime we do our shot.

                - Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.

                - Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.

                - Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.

                - Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each
                one...Bzzzzzzzzzzzz zzzzzz

                - Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.

                - Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

                - Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and
                allow them to periodically crawl around throughout the day, heck all day would be good too.

                - Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet....Get a very large tattoo in your most sensitive area.

                - Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take
                several walks around the deck with your eyes closed.

                - Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep - it's not the same at all.

                - Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.

                - Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appeared.

                - Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead...optional of course.

                - Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms.....hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.

                - Buzzing Feeling When Bending Our Heads to Our Chest (L'Hermitte' s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

                - Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.

                - Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn't get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

                - Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you'll get it.

                - Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.

                - Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don't move. Think about this every night wondering whether something on your body won't work the next day when you wake up.

                - Swallowing: Try swallowing the hottest chili pepper you can find.

                - Heat Intolerance or Feeling Hot When it's Really Not: You are on a nice vacation to Alaska. It's 35 outside and 65 inside. Light a fire for the fireplace and then get into it. Once you have reached about 110 tell me how you feel, even a person
                without MS would feel bad, now add all of the above symptoms - welcome to our world.

                Then Finally...

                After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it's all in your head and that some exercise and counseling is the answer.

                Comment


                  #9
                  Cosake's onto something

                  I loved Cosake's post on simulating various symptoms. As part of my job at a municaplity, I am the liaison to a commission on disabilities. One of the commission's missions is to educate people on what it's like to live with various disabilities. The group does various barrier awareness events throughout the year. This week they are doing an awareness event for one of the county facilities that holds public events.

                  Anyway, the commission hands out various mock disabilities to participants. People don't get a choice as to what disability he/she receives. After all, no one gave us a choice. You get what you get. Participants are made to travel through streets and take public transportation while in a wheelchair, being blindfolded, etc. The commission has made people get dressed, put popcorn in shoes, done smudged glasses, made people eat meals with one hand or blind folded, etc. It is an effective training tool.

                  Comment


                    #10
                    LOVE this

                    LOVE this! Thanks for sharing.


                    Originally posted by cosake View Post
                    Here is something I picked up from a previous message post to give to people to help them understand "How MS Feels".

                    When We Say We Can't do Something Because We don't feel Well, put yourself in Our Shoes By Using The Examples of our Symptoms Below...

                    - Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how ya' feeling now?

                    - Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.

                    - Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.

                    - Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won't fall down.

                    - TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.

                    - Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.

                    - Tingling: Stick your finger in an electrical socket - preferably wet.

                    - Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya' breathing?

                    - Shots: Fill one of our spare needles with saline solution, saline won't hurt you, we would love something worse but don't want to end up in jail. Give yourself a shot everytime we do our shot.

                    - Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.

                    - Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.

                    - Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.

                    - Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each
                    one...Bzzzzzzzzzzzz zzzzzz

                    - Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.

                    - Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

                    - Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and
                    allow them to periodically crawl around throughout the day, heck all day would be good too.

                    - Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet....Get a very large tattoo in your most sensitive area.

                    - Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take
                    several walks around the deck with your eyes closed.

                    - Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep - it's not the same at all.

                    - Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.

                    - Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appeared.

                    - Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead...optional of course.

                    - Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms.....hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.

                    - Buzzing Feeling When Bending Our Heads to Our Chest (L'Hermitte' s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

                    - Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.

                    - Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn't get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

                    - Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you'll get it.

                    - Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.

                    - Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don't move. Think about this every night wondering whether something on your body won't work the next day when you wake up.

                    - Swallowing: Try swallowing the hottest chili pepper you can find.

                    - Heat Intolerance or Feeling Hot When it's Really Not: You are on a nice vacation to Alaska. It's 35 outside and 65 inside. Light a fire for the fireplace and then get into it. Once you have reached about 110 tell me how you feel, even a person
                    without MS would feel bad, now add all of the above symptoms - welcome to our world.

                    Then Finally...

                    After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it's all in your head and that some exercise and counseling is the answer.

                    Comment


                      #11
                      You don't look sick?

                      Funny. You don't look stupid. But then, I suppose looks can be deceiving, can't they?

                      That's my stock response now. And, when it's pointed out that what I've said is hurtful, my follow up is, "Really? So I'm hurtful, and you're what? Oh yeah. Still stupid."

                      It's made people stop and evaluate how they speak to me. I love them, and I want them in my life, but I won't tolerate being treated like dirt simply because it's easy.

                      People can only treat you the way you allow them to. Stand up for yourself, firmly, and don't back down. If they won't stay in your life because you expect them to move beyond their own ignorance, then you'll get along better (in the long run) without them.

                      Comment


                        #12
                        let's not forget the times when we have to take steroids either and the side effects they have (which just compound some of our 'natural' symptoms!)



                        Originally posted by cosake View Post
                        Here is something I picked up from a previous message post to give to people to help them understand "How MS Feels".

                        When We Say We Can't do Something Because We don't feel Well, put yourself in Our Shoes By Using The Examples of our Symptoms Below...

                        - Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how ya' feeling now?

                        - Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.

                        - Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.

                        - Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won't fall down.

                        - TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.

                        - Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.

                        - Tingling: Stick your finger in an electrical socket - preferably wet.

                        - Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya' breathing?

                        - Shots: Fill one of our spare needles with saline solution, saline won't hurt you, we would love something worse but don't want to end up in jail. Give yourself a shot everytime we do our shot.

                        - Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.

                        - Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.

                        - Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.

                        - Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each
                        one...Bzzzzzzzzzzzz zzzzzz

                        - Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.

                        - Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

                        - Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and
                        allow them to periodically crawl around throughout the day, heck all day would be good too.

                        - Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet....Get a very large tattoo in your most sensitive area.

                        - Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take
                        several walks around the deck with your eyes closed.

                        - Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep - it's not the same at all.

                        - Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.

                        - Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appeared.

                        - Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead...optional of course.

                        - Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms.....hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.

                        - Buzzing Feeling When Bending Our Heads to Our Chest (L'Hermitte' s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

                        - Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.

                        - Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn't get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

                        - Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you'll get it.

                        - Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.

                        - Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don't move. Think about this every night wondering whether something on your body won't work the next day when you wake up.

                        - Swallowing: Try swallowing the hottest chili pepper you can find.

                        - Heat Intolerance or Feeling Hot When it's Really Not: You are on a nice vacation to Alaska. It's 35 outside and 65 inside. Light a fire for the fireplace and then get into it. Once you have reached about 110 tell me how you feel, even a person
                        without MS would feel bad, now add all of the above symptoms - welcome to our world.

                        Then Finally...

                        After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it's all in your head and that some exercise and counseling is the answer.

                        Comment


                          #13
                          What gets me is being compared to people who have a less aggressive form of MS and who are more functional than I am.... I even got this from someone with MS!!!! ( you can't have MS! I'm never that sick!). Congratulations!!!!!!

                          Comment


                            #14
                            www.butyoudontlooksick.com

                            Others that understand about the "invisable illness"

                            Another suggestion is to try to stop justifying yourself and your MS to anyone- it sure seems to use up a lot of time and energy , and they can find out all they "want" about MS if they want to..... ( My man has MS and I believe I have researched more about this disease than he has )

                            I am going to print out the "how MS feels article " very helpful if anyone asks ......
                            Peace ~~ Kat

                            Comment


                              #15
                              I know that being treated like that is hurtful. Please tell yourself that you do not have to justify your fatigue or prove you're sick to anyone. Sometimes, I think that when people say hurtful things like you've described, they're angry b/c it means more work for them.

                              Many of my closest friends (or so I thought) all but dissapeared after I was hospitalized for 10 days, and diag. Family members find it "just so hard," to be around me now. Guess what? That's okay now... b/c I now know who is really part of my inner circle. It took a couple of years for me to stop feeling so broken hearted, and I hope that you get to that place much sooner. Your energy is valuable and limited sweetie... you cannot afford to waste it on things that you cannot change.

                              Good luck and remember you can come here anytime, and get the support you're not getting. Love and Light... Hugs
                              Shalom,
                              Suzanne
                              You never fail, until you stop trying__Albert Einstein

                              Comment

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