We often hear some version of the quote to be nice to
everyone you meet because you don’t know what kind of battle they are going
through. I will focus on the second part about the invisible battles we each
struggle with on a daily basis. As
a counselor, I often hear about personal struggles from my clients. I have a diverse clientele, so I hear
stories from children all the way up to adults. Shockingly, often their struggles are very similar. I didn’t realize the hardest part about
counseling children is having to listen to them describe adult problems they
are dealing with.
Personally, I like to believe I am a strong individual. I try my best to complete the tasks I
have committed to, as well as to help others when I get the chance. Unfortunately, I fail sometimes in my
endeavors. Honestly, I know we all
fail at times, however, it doesn’t make the situation any easier to
endure.
My biggest fear for the longest time was that I would be
deemed a failure. Maybe that was
the drive that helped me to be successful in finishing high school, college,
and two graduate degrees. Along
the way I got a great job, bought my first new car, got married, bought a house
and traveled around the world. Perhaps
my drive not to fail is why I throw myself into projects and have been viewed a
“perfectionist” at times.
Additionally, this same drive for success is the same reason I have a
hard time admitting my failures.
Although I have the drive, I sometimes don’t have the
ability to do things I would really like to complete. One of those secret battles I struggle with has caused me to
cancel plans at the last minute or avoid getting too close or personal with
others. I might mentally want to
complete a task, but physically my body tells me “no way!”
I suffer from a skin disease called hidradenitis suppurativa
or HS for short. I haven’t told
many people because this is one of those diseases that you fight silently and
hope secretly that one day there will be a cure. The possibility of a cure being found is probably next to
nothing because there isn’t much research being done, although there are many
sufferers all around the world.
I’ve come in contact with many of them through online support groups.
The
main features of HS include painful and chronically recurring, deep-seated
nodules and abscesses, scarring, sinus tracts and recurrent discharge. The
areas most commonly affected are under the arms, groin, buttocks, and under the
breasts, though HS does not discriminate against any part of the body. In one article HS was listed as the 3rd
most painful disease. http://www.healthfiend.com/weeklytop/top-10-most-painful-diseases-aching-conditions/
On July 10th I will be having surgery to remove
disease and scar tissue from under my left arm and also to remove disease on
both of my legs. I am actually
excited about the surgery and look forward to possibly having remission in
those areas. I say my chances of
remission are probably 50 % post surgery, as some people see relief for long
periods of time, and some the disease comes back to that area almost
immediately. Other people who have
had the surgery have seen the disease rear its nasty head in other places.
The last couple of nights my mind has been playing tricks on
me and I’ve had the weirdest dreams about the surgery. I feel like I’m caught in the scene
from the Wizard of Oz where Dorothy is surrounded by people saying, “and you
were there, and so were you!” The mixture
of people together in any single dream makes no sense because I have people
from my past jobs, people from work, and people from church, mixed together
with my family and current friends.
One of the hardest parts of having a disease that you suffer
in silence is that you miss out on the support that can be offered when you are
experiencing a flare or having a really horrible, painful day. I am blessed to have a wonderful
husband who fights with me daily in this disease. He provides support and understands the best he can what I
am going through. I’ve told a few
of my closest friends about this disease, but I don’t think they truly
understand the suffering that takes place, as I’ve never shared with them the
gruesomeness of HS.
I speak out now, not for your sympathy, but more because I
want you to know what’s going on in my life. I am not ashamed I have this disease, but sometimes I
dislike the results of this disease on my body. I dislike the scars that are all over my body. I dislike the smell I have when my
infected areas are draining. I dislike that in the heat of Texas summers I have
to wear cover-ups to cover my wounds and scars. I dislike being “allergic” to many of the medicines that are
often prescribed to treat symptoms.
I dislike not being able to wear white. I dislike when I have abscesses in spots that make it
difficult to move my arms, sit down, or walk. I dislike having to choose to not participate in things
because my body is not cooperating.
The disease is not all bad. I have learned to treasure the days when I can hang out with
my husband and daughter and am not actively draining or in pain. I know my pain could be worse and the
disease can progress. My faith is
in God, and when things are really rough, I find comfort in resting in His
promises. I know one day I will
have a perfected body.
For those who are interested in finding out more about this
disease, you can check out the following websites or just do a google search. I do warn you, however, the information
and images can be graphic.
Unfortunately because the condition is not well researched, there is a
lot of conflicting and incorrect information. Many sufferers have to advocate for themselves because many doctors
are uneducated on the condition.
