I
first want to start off with saying do not feel bad if you have ever said any
of the following statements to me pr anyone else at one point or another. I know everyone has
good intentions but, for me, there are just some things I do not want to hear.
So this blog is going to be about what NOT to say and what to say instead. All
of these statements have been personally said to me and I would like to explain
my Lyme point of view to you so that you may understand how your words can
encourage me or discourage me. Again, I know you all have the best of
intentions and I don’t hold anything against anyone. This blog is simply an explanation
of different statements and why it is not a good idea to say them to anyone who
has Lyme Disease or a chronic illness in general. The second part of this blog
post will be pointed towards what to say instead and how to convey what you
want to say in a way that will encourage a person who is suffering from Lyme
Disease.
What to never say:
1. “But you look so good!” Sounds harmless
enough right? It is a compliment right? WRONG. Basically what you just said is,
“You can’t be sick. You look perfectly fine and good even.” People who suffer
from a life altering disease do not want to feel like all the fighting they do
every minute of every day is to ultimately be rejected and stepped on because
people on the outside do not see the pain in our eyes. If we turned our bodies
inside out and you saw everything we went through just to get out of the house
you’d never say such a thing. We may look good on the outside and, while it is
nice to hear we look good, it’s also a bit of a discouraging thought knowing no
one knows just how difficult our lives can be.
2. “I wish I could take naps whenever I wanted.”
This statement is (hopefully) pretty self-explanatory but unfortunately I
can’t count how many times I’ve been told this by people my age and people much
older than me. Yes, naps are great. I’m not going to deny that but naps are
only amazing when you can have the choice of not taking a nap. Just like toddlers,
they never want to take naps but they never have the choice either. They simply
need their sleep. It's the same with Lymies. We need our sleep to recover. It is not our
choice but our body's need. Most people have a choice to either take a nap or
participate in something productive. If it were up to me, I’d choose to not nap
and be productive. You may be jealous of me being able to take a nap whenever
my heart desires but I am jealous of you because you have a body that is not
exhausted 100% of the time. Which leads me into #3.
3. “I get tired too.” Oh boy, where do I
start on this one. Lyme Disease exhaustion is different from normal people
tired. Lyme fatigue is beyond words. I remember days where getting out of bed
and taking a shower were enough to put me back to bed for another 3 hours. Lyme
fatigue is physically and mentally brutal. If we fight the fatigue and not rest
when needed we tend to just make ourselves sicker and then it takes even longer
to recover. I know when people say this they are just trying to make us feel
understood and not alone but, trust me, unless you have Lyme it is hard to
imagine this level of exhaustion. A better example of this fatigue would
resemble the spoon theory. The picture below explains the spoon theory. Basically, each activity of the day costs (x) number of
spoons and you only have (Y) number of spoons allotted each day so once you run
out of spoons then you borrow from the next day’s supply.
4. “Have you tried taking____________?” Again,
I know you are trying to help but whatever you are suggesting we have probably
already tried. Thank you for thinking of me and what might help but please just
let me and my doctor work out what is best for my body.
5. “Are you better yet?” Thanks for hoping I
feel better because I’m right there with you! I want to feel better just as
much as you want me to or more but this is a very long process so no I am not
better yet….thanks for reminding me though.
6. “How are you feeling?” Prepare to be lied
to. No one wants to hear “I feel horrible, thanks for asking.” I am going to
plaster on a smile and say “I’m good” and quickly resort to, “How are you?” to change the subject. Stop
making me lie to you and just stop asking. Trust me, I will tell the world when
I feel great because I will be just as excited as you are! Otherwise ask anyone
but me how I feel.
7. “It’s all in your head.” If you say this always have good dental insurance and be ready to duck because my fist just
might accidentally come into contact with your jaw. Sorry, irritability is not a
symptom of Lyme it’s a symptom of being around stupid people. It is not all in my
head. It’s all in my head, gut, muscles and anywhere else the spirochete can
burrow into and destroy. My body is being destroyed from the inside out and you
think I’m faking? Why the heck would I
give up my life, my friends, and my dreams to fake a sickness that most doctors
don’t even believe exists? If you say this to me just know how deeply five words
can hurt. Thanks for believing me when I need you the most.
8. “You just need to eat healthier and get more
exercise.” That’s what got me here in the first place. I was a girl who ran
cross country, rode horses, participated in Tae Kwon Do and held a very
active lifestyle. I got a tick bite while trail running and two years later I was
diagnosed with chronic late stage Lyme Disease. This little tick bite changed
my life. I got the bite while having a healthy lifestyle. Thanks for the advice
but no thanks that will not cure all my problems.
9. “Feel better!” or “Get well soon.” I
wish. I wish it was that simple. I wish it was like a stomach bug or something
you can get over in a few days but it is not. Nothing about Lyme disease is
simple. It’s long, laborious and downright hard to get through. When someone
says this to me they are discounting all my hard work and all my fighting to
simply “get well soon.” If that’s all I wanted I would go buy myself a stupid balloon
that said that.
10.
“It could be worse” or “At least
it’s not cancer” (deep breath 5…4…3…2…1…) you are right. It could be worse
and at least it is not cancer. Cancer is horrible. Lyme disease is horrible. If
you think about it there are many similarities between the two diseases. 1. Cancer
treatment and Lyme treatment make the patient horribly sick. 2. Both can be
fatal if not caught early enough. 3. Both destroy your body from the inside
out. I am happy I do not have cancer and I’m glad I don’t have it worse than I
do but I would still like you to acknowledge the pain I go through each day as
well. I do not want attention but simply acknowledgment that you understand and
you believe me.
What to say
instead:
1. “I love you.” Simply hearing this
statement makes my day just that much better! It makes my heart light up and
gives me energy to fight.
2. “I
believe you.” Oh how I love this. I love to know you truly believe and know
what I say is true. Believing in me and my abilities and what I tell you about
my disease is an amazing feeling.
3. “How
can I help?” This one makes me smile. I will usually never let you help but it
is nice to know I have someone standing by my side while I do it myself.
4. “I understand.” This one is a big deal
for me. Understanding that I am doing everything I can to get better is huge. I
need people to truly and wholeheartedly understand when I have to cancel
plans. You have no idea how horrible I feel about having to cancel. For every
time I have to cancel something, Lyme has won in that moment. That is absolutely
unacceptable. Our plans were very important to me and I never want you to feel
like I have blown you off. That is not what I want but unfortunately I cannot
predict when I will have bad days. So if we had plans that I had to cancel
please please understand I am just as disappointed/upset as you and I am
really sorry.
5. “I am
proud of you.” This one is nice to hear as well. Sometimes I get upset with
things that I had to give up because of Lyme. For example, school. Most of my
friends went off to college somewhere and are having a great time. I’m working
my butt off to get through 3 classes this semester. I don’t have any
outstanding accomplishments at this point in my life. I don’t play sports or
participate in any extracurricular activities, no scholarships or awards
either. To hear that someone is proud of me despite my limitations is amazing.
If you asked little Kelsey what I thought my life would be like now I would say
“off to college somewhere and doing something with my life.” Instead, I am sitting
here in my living room writing a blog about my life as a Lyme disease patient. It's not what I expected but this is God’s plan for me. Hearing someone is proud of me
is just affirmation that I am doing exacting what I need to be doing right now - following God’s plan.
6. “Thinking of you.” Whether it be a text
or a tap on the shoulder I feel the love when this is said. I don’t care what
the thoughts were. I don’t even care if you were plotting my murder I just feel
special to know I am important enough to be a part of your thoughts in that moment.
7. “I’m
here for you.” This is a good one for when you have no idea what to say. It’s
perfect for every situation! This statement is like all the other statements
all wrapped up into one. I know you believe me, I know you love me and want to
help me and I know you understand what I’m going through. Thank you for being
here for me it is a huge encouragement to know I have people on my side
fighting for me and with me.
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