Fibromyalgia: Shame and Judgement

it’s really only been since last August
2017 that I have shifted my thinking and how I live with fibromyalgia I know how
difficult it is to live a life with this illness and we most of the time start to
feel like we’re turning in you know to our illness we’re feeling lost we’re
feeling scared hopeless frustrated misunderstood and
with all of those emotions that were feeling a lot of times the public family
friends maybe strangers on the street we deal with criticism and judgment there
as well we live with an invisible illness but if someone saw me out on the
street and they didn’t know me they have no earthly idea that I’ve been fighting
for survival I’ve learned to adapt to living a life with fibromyalgia however
I never let this illness defined Who I am a person who has this illness
fibromyalgia or RA MS lupus EDS any kind of chronic pain chronic illness will
probably tell you that there’s some things that they would love for their
supporters or even strangers just to do we feel misunderstood and we already
beat ourselves up we’re bullying ourselves all the time and I know
firsthand what it’s like to feel like a burden and helpless and to watch my life
pass by out through my window I know what that feels like I know what it
feels like to watch your family move on and move forward with life
making plans meanwhile you can’t make plans because you don’t know what’s
coming in life with fibromyalgia chronic illness chronic pain is is hard very
very difficult and with that said there are some things that we would love for
you to stop doing and start doing number one
stop saying that we can’t possibly be in that much pain
okay first do you reside in this rickety body therefore please don’t tell me I can’t
be in that much pain if you were in that much pain you wouldn’t be able to run
the errands you just did if you were in that much pain you wouldn’t be laughing
or I saw you the other day on Facebook on one of your videos and you look happy
and energetic you can’t be in that much pain we hear that a lot and you know
what it hurts because basically you’re calling us a lighter and then we feel
unvalidated and then we become withdrawn we start to feel bad about ourselves and
it just is a domino effect you have no earthly idea how much pain a person is
and on a daily basis when fibromyalgia sinks it’s claws in these are some
symptoms that we will have all together at the same time not separately all
together and the fun-filled package looks like this diarrhea nausea anxiety
itchy skin burning skin upset stomach gas bloating can’t think clearly you
can’t sleep your muscles hurt you have muscle spasms all your joints are stiff
and all your joints hurt you feel like somebody has hit you with a baseball bat
and then set you aflame and then pushed you down five flights steps now we have
a great talent of learning how to adapt to that much pain and we learn to smile
because we have no other choice so please stop telling me I can’t be in
that much pain it hurts please please please stop
judging how we live our life with fibromyalgia we don’t need to know what
helped your brothers sisters cousins sister-in-laws nieces husband’s daughter
4 times reaping we’re doing the best that we know how to do and literally
we’re flying by the seat of our pants there’s not a ton of information out
there fibromyalgia and so therefore we’ve already made a list of things that
we need to do in our head to try to figure out what is going on we just need
for you to become an advocate for us be supportive and encouraging and please
stop telling me what I’m doing wrong don’t eat that don’t drink that
don’t do that don’t lift that the number one thing I think I hear most in the
fibro community that I’m around is everyone thinks I’m lazy and I’m not
lazy I’m just too weak and that’s the truth we are not lazy matter of fact
while you’re up working and dying of sweat we wish that we had enough energy
to get up and die of sweat as well instead we’re sitting on the sidelines
on a bench watching Life go by if you think we’re lazy because you can’t see
our pain you can’t feel our pain and it’s invisible
please stop telling us that were lazy or insinuating that were lately we already
beat ourselves up because we didn’t get this chore done or it’s that errand ran
and we’re thinking oh my goodness our family our friends we’re gonna they’re
gonna think I’m lazy and I didn’t do my job and that’s simply not the truth
we are already sitting there in our mind saying good lord why couldn’t you just
push through why couldn’t you just push through they’re gonna be so upset
they’re gonna just know you’re lazy you just know you’re lazy
we sit there and we think about that we don’t need added added criticism you
don’t need added judgment this is a little random but this comes up a lot
actually in the fibro community people actually put notes on our cars
when we legally because we have a handicap tag park and a handicapped spot
at a parking lot there’s nothing wrong with you you’re evil for parking in this
spot how dare you don’t you know handicapped people need this spot
who are you what do you think you are quit being lazy park farther away you
can’t walk yes we actually get these things said to us and it’s hurtful
because while you’re standing there judging me watching me get out of my car
and walk into the grocery store I simultaneously in my head and praying
that I don’t faint while on this excursion that no obstacles get in my
way that I can do this smoothly efficiently and get back home to safety
I’m thinking in my head I hope I can get the shopping done before I have diarrhea
again I sure do hope I can get the shopping done before I have an anxiety
attack I do hope that I finish this excursion before I feel confused and
lost these are the things that would be running through my head
walking into the grocery store it’s not what do I need in the grocery store what
am I here for it is you need to get in and you need to get out and you need to
get back to your comfort zone we live with an invisible illness every
single day you’d have no earthly idea with what I battle every day and have
battled for many many many years of my life and pain has a way of changing
people and we know that our lives are different having this illness
we don’t need a reminder please stop telling us oh do you remember when you
could do this do you remember when you could use to run a mile do you remember
when you used to walk five miles a day with your friend do you do you remember
when you could just keep up or what happened why can’t you keep up anymore
why are you slacking in your gorge why are you slacking at work there’s nothing
wrong with you you look falling meanwhile we’re screaming on the inside
help Constance help me help me help me help
me help me that’s what these are some things that the fibro community does
need we need encouragement we need research we need support we need
understanding less judgment we need for you to research and help us and be our
advocate we need help and we need to get this illness on a platform so that it’s
paid attention to and people can start to live their lives again and they can
get out of pain and actually function and be a part of society and their
family again we need your help and it would be grateful if you know
somebody with chronic pain chronic illness fibromyalgia that you ask them
how can I help you today or have you been researching your illness and what
have you found what’s your course of action is there
anything I can do to help or just be spontaneous and randomly search
fibromyalgia and read up on it and then go to that person and say hey you know
what I did some reading and while I’m sorry it’s as simple as that if you saw
how we feel there’d be no doubt that you’d be paying attention but because
you can’t see it it’s not real but it is a very real monster and it
lives under our beds every day every night waiting stalking and we’re waiting
for it to attack we’re already hard enough on ourselves stop bullying us so
that we can stop bullying ourselves it’s hard enough
so please wrap your arms around that person you know with this illness give
them a gentle hug not a too tight hug a little hurt but a gentle hug we are
who we’ve always been we’ve just have the added benefit of living with this
condition if you know someone with this illness please share this video with
them you never know what they need to hear right now at this moment and how it
may help them in their day with chronic pain and chronic illness please
definitely subscribe to my channel and hit the bell so you can get notified
when new videos are uploaded on Tuesdays and Fridays and I definitely would love
for you to give me a thumbs up and let me know how I’m doing and comment below
if this video resonates with you and if it was any help for you and just let me
know how I’m doing so thanks so much have a wonderful day
and I’ll catch you next

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