Music Therapy and Lupus
I am a 28-year-old single Latina music therapist who has Lupus and lives in Colorado. What
does that look like for me? Let me expand on each of these words to show the significance that
they have in my life.
28-year-old Single
This will be expanded upon in later sections, but I will say that being single and in my
late 20s has its challenges. I’m far away from all of my family and sometimes I get lonely. I have
to financially provide for myself with the challenges that come with Lupus and living in
Colorado, a place with high living expenses. I lose single friends to relocation (moving) left and
right because being single often means “not tied down”, so other singles move on to the next
life/career opportunity after I haven't known them too long, but long enough for me to get
attached. The grief when they move away is real. As a single person, having other singles in
one’s life to relate to is key in not feeling alone/isolated/left-behind. Churches I’ve been to and
enjoy for many reasons often do not have many single people and it seems that the teaching in
the churches often overlooks the single life and leaves us to figure things out on our own. I have
to advocate for myself in all situations that could be unsafe (in work, with health, etc) – no
husband or parent will stand by my side to speak up on my behalf. I’m definitely learning how to
be a strong independent woman, mostly because I have no choice.
Latina
For the past few months, I have begun to explore my identity as a Latina with Hispanic
roots. I almost feel like I can’t call myself Hispanic because I don’t speak Spanish, but it is
definitely in my heritage. In my last name. In my physical appearance. Lately I’ve felt a longing
to be part of the Latino community because I am technically Latina, but I don’t really fit in there,
mostly because I don’t speak Spanish, but also because of the socio-economic status I was
brought up in. How many other Latinas am I friends with? Maybe 2-3. Do they live close by?
Not particularly. One is in Texas, another is in Denver. Overall, much of the music therapy
profession is very white. When I go to company meetings, 90% of the other the music therapists
are white. I have never felt out of place in a crowd of white folks because of my upbringing in
white communities. I must say though, it would be a dream to have more Latinas (and Latinos)
in my life.
Music Therapist
In case you don’t know what music therapy is, here’s a brief description. Music therapy
is a profession in which a board-certified therapist uses music interventions to help clients meet
specific goals and improve quality of life. Music therapists work with many different populations
such as children and adults with disabilities (physical, developmental, cognitive, speech), the
medically vulnerable, mental health, veterans, behavioral health, and many others. I work with
mostly children with a wide range of diagnoses. Many of the children I see have autism, seizure
disorders, other medical diagnoses, or a combination of several diagnoses. I typically see them in
their homes, except for during this pandemic. Most of the other music therapists in my company work full time. I was full time for a period, but did not have as many clients as most of my co-workers did. When I took on the worship coordinator position at my church, I decided to go to part time with music therapy. I recently left that worship coordinator position, so technically I could go back to full time now, but the thought of that seems daunting to me. Why is that? There are many factors, but one of
them is my illness, Lupus.
Lupus
I have been so fortunate to have my Lupus mostly under control at the moment. My first
flare up in 2013 was a bad one, but I made it through and got a relatively fast diagnosis. I will
forever be grateful to the GP (doctor) who on a suspicion/guess decided to give me the ANA
blood test, which came back positive and was a big clue to my Lupus. I was put on good
medications that seemed to hold back the inflammation storm that was raging in my body. As a
short explanation, my main symptoms were joint pain, a pleural effusion (excess fluid in the
lining around the lungs), and inflammation in my retinas (eyes) causing blind spots and possibly
retinal migraines (this is my own guess). Those symptoms were in addition to the ever-present
fatigue (exhaustion/weakness) I still experience at times. Most of these symptoms decreased and
were not very noticeable after about 6 months to a year of being on my new medications. Staying
physically active, eating healthy, and managing stress was a big part of why I think I remained
healthy for the past 7 years. That of course in combination with a good medication regimen.
This pandemic has made life absolutely crazy for many. For me, the biggest effect it has
had has been increased stress, which is something I was always told to be careful to manage. I
have had 2 different troubling eye symptoms in the past few months that I went to several eye
doctors for, but didn’t get many definitive answers. My best guess for what one of the symptoms
was is retinal migraines. The experience is having a small to large portion of your vision in one
eye suddenly go static and then blank/blind. It lasts about 5 or so minutes and then the static and
cloud of blindness fades away and I can see through that portion again. I had this symptom in the
summer of 2013, the summer of my first big flare. The ophthalmologists and rheumatologist
don’t seem to think it’s a big deal, at least as it relates to my Lupus. However, I can’t help but
think it might all be related. The one thing I am pretty sure of is that it gets worse with stress.
The more stressed I am, the more often I get both of the eye symptoms. When you live with a
chronic illness like Lupus, you are always on the edge of your seat, nervous about if you are
going to have another flare up. Or, if you don’t have the illness under control, you experience all
of the symptoms unchecked. Thankfully for me, I’d say I’m still in “remission”, but it can
always come back, and stress is one of the things that can make that happen.
Colorado
I live in Colorado Springs. My immediate family lives in Houston. Many of my extended
family members live in San Antonio. I’m 12-14 hours away from the closest family member. I
miss them sometimes and lately, I’ve been missing them more. One of my fears is that if I get
really sick again, I will have to quit my job and move back home to have my parents take care of
me. While that wouldn’t be the worst thing, it’s not necessarily sustainable. As grim as it sounds,
I’m more likely to get sick when I’m a little older, and when I’m a little older, my parents will be
older as well and will likely need someone to take care of them. They had me somewhat late in
life, so they won’t even be around for more than 15-20 years, if that long. My all time biggest
fear probably is to be sick and alone. No parents, no spouse, no kids to care for me. Being single
is a tough thing at times on its own, but being single when you’re sick and don’t have anyone to
care for you? That is what I fear. I know friends can help to some degree, but it’s not the same as
immediate family. There’s always a feeling of being a burden, especially when it’s not your
family.
Music therapy for Lupus?
Where can I shine a light of hope in all of these challenges and fears? Perhaps music.
How has music affected my life positively recently and in the past? One of the biggest things it
has done has been to help me cope with stress and anxiety. One of the things that drew me to go
ahead with my application to intern at a hospice was the experience I had calming my anxiety
with guitar playing. I have the memory of being anxious and unsure about whether I should
apply or not. I was sitting on my bed in my apartment playing my guitar, trying to calm myself. I
played the song “Jesus Savior Pilot Me” quietly with gentle strumming and some finger picking
as well. My eyes were closed while I played. When I opened my eyes with a new sense of calm,
it dawned on me that this was it. I could help people calm their anxious fears and stress by
playing music for them in this gentle manner. That is what pushed me to move forward with the
internship and ultimately, my career as a music therapist.
Since then, I have had doubts, big and small, about my career. Sometimes I don’t feel like
I’m passionate enough about the profession to be a good representative of it. However, I don’t
think I’ll ever want to stop using music to move people. To calmness/relaxation, to joy, to speak,
to move, to think, to feel, etc. No matter where I end up in the future with my career, I always
want to be able to do this, for work or not. Recently, I’ve been writing songs, specifically song
suites that have an overarching theme with sub themes for each song. My most recent one is
related to being a Latina in a white world who feels like her heritage is slipping away. It’s both a
catharsis and a challenge to others to think about their own heritage and cultural identity as well
as how non-white/American cultures have been suppressed by assimilation and other cultural
travesties. Again, the music is meant to move people to think, to feel, to explore self and culture.
And what about using music to directly impact symptoms that are caused by or possibly
related to Lupus? Since my illness tends to flare up or cause symptoms when I’m very stressed, I
need to manage my stress. How can music help with that? As I’ve said, writing songs can move
people. Including me. Songwriting is one of the methods music therapists use in sessions to help
people meet their goals. If song writing can help me process through emotions I have, it is
absolutely going to be therapeutic for me. In addition, simply listening to calming music can help
me relax as well. Or, playing calming music on my guitar, just as I did 5 years ago when I was
on the brink of applying for the music therapy internship. Or, I can find songs that I can relate to
on an emotional level and listen to them and take them apart to know that I’m not alone in what
I’m feeling or experiencing. Music has that great power of moving people and letting them know
that they are not alone in their experience.
What about music therapy for others experiencing chronic illness, or even acute illness?
Music therapy for pain and stress management is one of the most interesting ways of helping
people that I learned about in school. Stress wrecks havoc on the body. It increases perception of
pain, it can increase anxiety, it can change your body chemistry to release chemicals that
increase the immune response, such as increasing inflammation, often causing pain. How can
music therapy help? Music can be used to change the brain’s focus from the pain to the incoming
positive stimulation. The brain does not focus well on several things at once, so if music can be
used to overwhelm the signals to the brain so that pain doesn’t dominate what is being perceived,
then the perception of pain can be reduced or even completely blocked. There’s a more scientific
explanation I learned in school called the “gate theory” or something, but it’s been so long, I
don’t remember details. When you can use music to decrease perception of pain, it often reduces
stress. Or, if you decrease anxiety with music, it will often decrease perception of pain. They are
directly related and affect each other. Also, using music to increase relaxation will decrease any
sort of stress in the body and because of that, the body’s immune response and stress hormones
will decrease as well. Quite relevant with autoimmune diseases like Lupus. This is why music
therapy can be so effective in hospital and hospice settings. It can literally help patients heal
faster. And of course, it helps people be more comfortable and generally have a better
experience.Technically, music therapy is only truly music therapy when there is a therapeutic
relationship between the client and the therapist, but that doesn’t mean I can’t use some of my
music therapy strategies to help myself in the meantime cope with life’s challenges, including
my chronic illness. Maybe one day I’ll get to have my own music therapist. Until then, I’ll be
holding on to the tools that the good Lord has given me to help me face the great and beautiful
thing we call life.
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