As someone who deals with chronic pain daily there are just some things, I
wish people would stop saying to me and to others who suffer from chronic pain
due to illnesses such as Spinal Cord Injury, Chiari Malformation, Fibromyalgia,
MS, and Lupus to name a few. Me and my fellow suffers realize that people just
want to be helpful and offer their opinions and/or advice to try to lessen the
pain or help us find other ways to cope and deal with the pain. Rest assured
that most of us that deal with chronic illness and pain daily want nothing more
for the pain, fatigue, and other symptoms to just go away even if it is just
for the moment.
So here are some things that others would not say to me or to my fellow
1) Your pain really is not that bad. Well, let
me say for all of us who suffer from any chronic painful illness, IT IS REAL!
The pain and fatigue are real. The sleepless nights are real. The intensity may
vary during the day, but if we were not taking medication on a regular basis
most of us would become non-functional and have pain of 10+.
2) We all get aches and pains as we get older. Yes, we all
to get more aches and pains, but the pain most of us battling chronic illness
have is intensified. And for a great many of us we begin to experience pain at
an age when we should not hurt.
3) If you sleep more you will feel better. Well, sleep is
important, but unfortunately the ability stay asleep is a challenge. Often even
after a full night of sleep for people with SCI, nerve damage, Lupus, and
Fibromyalgia we still do not awake refreshed because the body does not get into
the deepest stage of sleep. Therefore, even if you manage to stay asleep for
several hours, you are most likely not going to awaken feeling refreshed. This
is the reason that sleep aids are often prescribed. And even then, they do not
4) You need to get more exercise. Most suffers
have treatment plans which include exercise, but it must be approached slowly
and carefully to avoid triggering a flare. Currently, I exercise at least 1 hr.
at least 4 times per week. When my pain remains low, I take advantage of it and
exercise more. But we must also listen to our bodies and allow for down time
even if it takes more than one day to recuperate. Some days just rolling over
5) You do not look sick. If we let ourselves go and
really showed how bad we feel, then people would not want to be around us. Yet,
when we try to focus on feeling better and put on a “brave face” then we do not
look sick. I know that for me personally when I do my hair and make-up I tend
to feel better even if I must rest afterwards. Remember, sickness has many
different levels and faces.
People mean well. Most often the comment comes from a place of genuine caring
and they just want to help. This note is for them. Please be considerate and
think before you speak. It is not easy for those of us with living with
illnesses that cause chronic pain. It can also prevent an extremely negative
response for the person with the illness. People tend to be a bit grumpy when
they do not feel at their best. May God bless us all as we go on this journey