July 29, 2016
As patients traverse the mysterious journey that is Lupus, and try to battle the war within their bodies, they may stumble and fall. Isolation and depression can quickly take over, worsening both mental and physical symptoms. Thankfully, there are many therapeutic and easily-accessible writing tools through which patients can liberate their thoughts. Today’s technology gives Loopies many options for staying connected to the outside world; with the click of a button, they have the ability to connect with those going through the same experience.
Since my SLE diagnosis in 2005, I have learned that having an outlet to express emotions is absolutely IMPERATIVE. Many days, I want to scream out the window so all the world can hear me complain about how rotten I feel and how much I struggle. I wish to shout from the rooftops, “HEY! Lupus is really annoying and frustrating!!! I am really, REALLY angry!!!”. While yelling out the window has its place, a different therapy option is to communicate with loved ones, friends and fellow patients. This can achieve two things. You can: 1) update family and friends about your condition and 2) chronicle all the aches, pains, stresses, worries and frustrations plaguing you. This exercise can be emotionally freeing; a way to both grow closer to those who care about you, AND a way for you to vent your feelings. One of the first things I did when I was diagnosed was search for other Lupus patients online, and it provided me with immediate comfort and hope.
There are a multitude of SLE websites, many of them started by patients themselves, geared towards providing a forum for communication, education and support. Blogs are one medium where you can find like-minded people. Connecting in cyberspace may seem like a poor substitute for “live” communication, but many Loopies are too sick to even leave the house. Realizing that they are not alone can empower the individual and provide inspiration to keep going.
Daily journaling can be restorative for many reasons. Recording emotions that stem from this fight can be challenging, but even jotting down a few words or phrases can be curative. Brief journal notes can also be helpful to your doctors; knowing which symptoms are bothering you, and their duration, can lead to a better, more thorough physical checkup. We MUST be our own advocates. The journal notes I bring my doctors are always appreciated and useful.
Writing doesn’t necessarily have to stay private, if this benefits the individual. For me, sending my thoughts to my friends via email feels cleansing. The ability to express myself to those close to me is crucial to my health; it is vital that they witness my struggle so that they can better understand me. Those who care about you will WANT to know what is going on in your life. They will WANT to receive these kinds of messages. It is a two-way street that can benefit both parties.
On the days when you want to throw in the towel and give up, a Gratitude List can put things in perspective. When I am feeling sorry for myself and wallowing in self pity, I try hard to count my blessings. This can be difficult when one is ill, in pain, and feeling low. But if you can try and think of the good things in your life, the positive aspects, it can be valuable. Write down everything in your life for which you are grateful: family, friends, a good doctor, a nice meal somebody made for you, your favorite TV show or an activity planned for the future, etc. Reviewing the list may lift your spirits!
Advocacy is another way to help you express your feelings, as well as maintain a voice within the Lupus community. Lupus research is in its infancy and we, as patients, have a responsibility to get the word out. We must keep Lupus in the national and global conversation. As advocates (for both ourselves and others), it is our duty to promote the need for research funding. We can write to our political representatives to make our mission known. If WE don’t speak up, who will?
A doctor of mine encourages me to give in to crying if I need to cry. He feels this is as important as any other treatment. By writing down your feelings, you can accomplish something similar; having a cathartic experience and letting go of some of your grief can help you mentally, and, in turn, physically.
By Alexis P. Markowitz, M.A.