It’s not just in our head. The pain is there
and always would be even if there is no apparent reason for it. Our pain is
real and will not just go away after we take some pills for a week or two. It
would always be there and we have learned to live with it. Here are 16 more
things we wish you knew about us!
1. We Don’t Make a Mountain out a of Molehill
You think you can imagine our pain? Now
multiply that amount by 10. No matter how sympathetic you are, studies have
proved that people tend to underestimate other people’s pain. Chronic pain by
default is hard to imagine unless you have experienced it in your life. It’s
invisible, but it is always there. We urge health care not out of hypochondria
or the need for attention, but because of our severe physical state.
2. We Need to Balance Actions Carefully
We use the Spoon Theory: We have a limited
amount of spoons each day we could use for different actions. Getting up,
getting dressed, taking a shower, driving, walking, picking up the phone — each
action requires us to use one of our precious spoons. On good days, we finish
with a few spoons left, so we can do something fun. On bad days, we borrow
spoons from the next day and need extra recovery afterwards. So if we suddenly
cancel our plans with you or tell we can’t do it now — it’s just because we ran
out of spoons today. Try to understand this.
3. We Struggle to Find a Good Doctor
Sadly, a lot of health care pros lack
knowledge in pain management because it is rarely part of their training. We
often visit numerous specialists before receiving a proper diagnosis and wait
months to years to see a real pain specialist for treatment. Doctors often fall
victim to the cognitive error of underestimating another’s pain and a small
number of doctors are willing to take the legal risks involved in prescribing
powerful pain pills.
Same goes with the nurses. Finding a good one
who can really understand and help us relieve the pain is hard! Luckily, there
are some online schools like Sacred Heart University that are training future
nurse leaders to overcome these issues in the future and provide better care
for patients.
While you may think it’s crazy, we’re willing
to travel further to find a good nurse with this kind of training and rave
about it when we find one.
4. We Are Not Lazy
Remember the limited amount of spoons we
have? Now add the fact that it takes twice as much effort for us to complete
even simple things. We try harder than other folks, yet we still manage to
accomplish less.
5. We Try to Look Our Best
“But you don’t look sick” is one of the most
common phrases you hear if you have invisible disease. Well yes, we try to look
our best even on bad days when our body explodes from pain. We dress up
carefully to cover up our bruises or swelling, take painkillers at the optimal
time, and rest before going out. We would love to pass as normal as much as
possible! Even if we feel pain, we would keep it to ourselves until the moment
we step into our apartment and just collapse.
6. We Don’t Ignore You
Sometimes our pain occupies too much space in
our brains and we simply cannot focus on anything else. Pain can be very distracting
and mentally draining, so please forgive us when we can’t give all the
attention to you.
7. We Know Our Illness Won’t Go Away
It’s always there. We can’t escape. And yes,
we have researched all the possible options. If there was a cure, we would know
about it!
8. We Are Not Drug Seekers
Sadly, we need to explain that both to the
doctors and folks around. We don’t want drugs. We want anything to make the
pain go away even for a little while. So yes, sometimes our treatment requires
taking opioids or medical marijuana. We treat those just like any other remedy.
And no, we are not particularly fond of the side effects either.
In fact, as the Cleveland Clinic explains:
Addiction appears to be distinctly uncommon in patients without a prior history
of addiction. Addiction is a psychological phenomenon that isn’t caused by
chemical components of the drugs and typically requires a setting different
from the one we have. We take our drugs under supervision and come back home to
the loving family unlike the street-users.
9. We Don’t Always Know How to Manage Our Pain
Just because we have been dealing with it for
ages doesn’t mean we always know how to tame it. Sometimes, we have very bad
days when no previous routines help. We just close our eyes and wish those
would pass faster.
10. We Get Super Active on Good Days
Physically feeling good is just about the
most exciting feeling we can have! We can do our chores normally, go on a day
trip, meet with a bunch of people at a time, and even think of running a
marathon. On a good day we are super active and excited with everything, trying
to get as much done as possible!
11. We Don’t Want You to Stop Inviting Us Out
No matter how many times we have said “no” we
still want to be part of the gang and go out when we really can do it.
12. We Don’t Have a Job for a Reason
Again, we are not lazy. It’s just that we
often lack spoons to work on the top of our other activities and daily chores.
Besides, most employees refuse to take staff for a few hours per week and
tolerate the fact that we can leave at the middle of the day if our pain gets
unbearable.
On the bright side though, thanks to
technology we can work from home in our own pace, doing various jobs online,
selling stuff on eBay or Etsy, learn everything we need from self-help and
nursing to design or coding online. If we don’t have a regular job, it doesn’t
mean we can accomplish nothing in life. Multiple sclerosis did not stop Vanessa
Heywood from creating an award-winning music company!
13. We Don’t Want Sympathy, We Want Acceptance
Instead of making that “I’m so sorry for you”
sad face, treat us like equals. It’s not that you should completely ignore our
condition, but show us you are ok with it and ready to make small adjustments
for us.
14. We Don’t Want Your Medical Advice
Believe me, we have heard enough already and
feel frustrated, as they don’t work. Thanks for the thought, but let’s just
talk of something else. My disease does not define me. I know a lot of other
interesting things, I would love to discuss with you instead.
15. We Need to Know You Are Here for Us
No matter how self-sufficient and independent
we try to appear, sometimes we just need you to be here with us and hold our
hand on a bad day.
16. We Appreciate You and Everything You Do for Us
You should never forget that. We are
eternally grateful for supporting us and making us feel loved!
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