Chronic illness: any disorder that persists over a long period and affects physical, emotional, intellectual, vocational, social, or spiritual functioning.
I have had a chronic illness called Sjogren's Syndrome for approximately four years. I say "approximately" because in my mind, that was about the time my noticeable symptoms began to have an impact on my level of functioning. Looking back, it certainly seemed that the Sjogren's may have been lingering for years before that. I didn't notice though because I was too busy living my life.
Sjogren's Syndrome, like all autoimmune diseases, is a chronic illness. That means that it is always there. It is not like a cold, broken bone, or flu where you get treated, feel better, and continue on with your life in the usual manner. It is always a part of your life, every single day. Like a roller coaster, it has peaks and valleys. Sjogren's Syndrome also has the great misfortune of being an "invisible illness" which means that its devastating effects usually cannot be seen or noticed just from looking at the person. Maybe not by speaking with the person either. A person who was seen at a social event and appeared "fine" may be updating their Facebook status six or twelve hours later stating how sick they are. It's not an exaggeration or a plea for sympathy. Just the way it works.
I believe that I have worked very hard at being a person who does not solely identify herself by her illness. I think for the most part, I have succeeded at this. However I also believe that I am at a crossroads with this issue. In an effort to diminish the impact of Sjogren's on my existence, I have turned a blind eye to some of the unique and difficult situations that can arise in my life and in my relationships while living with a chronic illness on a daily basis.
As I have progressed through my Sjogren's journey over the past several years, a lot of things have changed for me in terms of how I deal with the illness and just as importantly, how those around me deal with my illness. When a person first becomes ill, they are oftentimes fortunate enough to have a flock of people supporting them and cheering them on. The problem is, the illness does not go away. The months and years tick on and the initial rush and zeal to support the person diminishes, usually at a time when they need it the most. In most recent months, I have had the blessed opportunity to meet and develop relationships with other people who have either Sjogren's Syndrome, another autoimmune illness, or a completely different chronic illness. The common theme I hear is the difficulties in managing our illnesses on a long term basis and the effect that the illness has on our relationships. As I form these connections, read other blogs, and network, it has become more and more strikingly clear to me how different our lives are from our non-chronically ill peers and how this can set us apart in society.
I am discovering more and more lately that there are certain needs, expectations, and beliefs that I, and many people like me, have that are not being met or understood. I have some theories about why this is. I also have some suggestions on how a person can be a support to someone with a chronic illness. Some I will keep to myself in the interest of continuously trying to understand the other perspective of what it must be like for the people in my life and some I will share because I live in the belief that most people are well intentioned and as chronically ill folks, we don't always know how to speak up for ourselves and what we need. Therefore the people in our family, friend circle, workplace, and community sometimes don't know how to be a part of our lives when dealing with us and our chronic illness.
As human beings with a chronic illness......
*We do not want to be defined by our illness or whatever diagnosis we may have. We are very aware that this may appear to be the case sometimes as illness is a frequent topic of conversation and a very real issue that needs to be managed on a daily basis. But really, it is not any different than discussing what consumes a lot of people's time in general such as children, pets, hobbies, ailing parents, and jobs.
*We recognize that it is VERY difficult to be in any type of ongoing human relationship with a person that has a chronic illness. We know that and we spend a lot of time worrying about it. Plans get cancelled at the last minute and unpredictability is our new friend. We appreciate flexibility and spontaneity. Taking an unexpected ride to Walmart or Barnes and Noble? Call us. Even though there is a good chance we might not be able to go, the feeling that someone put forth the effort will stay with us, indefinitely.
*Time and energy are valuable to us. It is not helpful to question our decisions in regards to how or where we chose to spend our time. We know everyone has crazy, busy lives but oftentimes the one thing that makes the difference in whether we can socialize or not is if you can come to us. Our homes may be a mess, but the appreciation for the effort will be lasting.
*Please don't ever tell us we "look fine". It's a well meaning statement but it just adds to the frustration of trying to exist in a world that does not understand how we can look so normal on the outside and be in hell on the inside.. But feel free to compliment the latest haircut! Or the new pedicure...
*Many of us with a chronic illness are riddled with guilt about burdening others and we therefore do not always know how to ask for help. We do not want to be perceived as needy or overly demanding to those around us. Yes, it is our responsibility to let our loved ones and friends know when we are struggling more than usual, but we also need others to take some initiative. Don't think about it. Do it. Anything. I would be thrilled if a friend called me and said they were stopping by for a few minutes with a couple of magazines on their way to another destination. A quick smiling face can break up a very long day.
*Many of us have partners, spouses, children, parents, and friends who help take care of us when the going is rough, which could be on a daily basis. Please remember them. It may be helpful to keep in mind that not only do they have jobs, families, and other obligations, but they are also the main support person for the chronically ill person; which can be a whole other job in itself. Try not to assume that because a person with a chronic illness lives with someone else, that the person, or their caregiver, does not need support.
*Never underestimate the power of a phone! Or open up your laptop and send a message. Know what is going on. It's hard for us to hear statements like you don't want to "bother us" or "wake us up". We know you mean well, but we are smarter than you give us credit for. We turn off our ringers when we are resting! It is more important for us to know that people care.
*Be our friend. Or don't be our friend. That's why some people are just acquaintances and that is OK. It's not easy to have a friend with a chronic illness and it can be much more challenging than your average friendship. And don't forget about us when events and get togethers come up. It is easy to assume that someone who is frequently ill won't be able to attend something, but let us make that decision! We don't want friends just during the tough times. We want them all the time! If you do feel that you cannot commit to being an emotionally supportive and present friend, then do what is best for you and move on.
*A lot of us with chronic illnesses struggle with issues around sleep, pain, and side effects from medications. While the rest of the world is buzzing away on a daily basis, these issues are a setup for isolation and loneliness. It can be a very rapid decline from coping well to depression and hopelessness. Never underestimate the power of humor, a hug, or a kind word.
I hope this is helpful.
It is often said that it take a village to raise a child.
I also think that it takes a village to support a person with a chronic illness. Maybe that way of thinking is not fair as we all have our own unique challenges and obstacles in life. For me, my experiences with needing the help of others are due to the fact that I have a chronic illness. But it's not just about a village or community supporting those with chronic illnesses. It's about us supporting each other as human beings. Because at the end of the day, in my opinion, that is all that really matters.
Photos: Courtesy of Google Images