Lana Barhum is a legal assistant, patient advocate, freelance writer, blogger, and single parent. She has lived with rheumatoid arthritis and fibromyalgia since 2008 and uses her experiences to share expert advice on living successfully with chronic illness.
Living with a chronic illness can be very frustrating. There is no one-size-fits-all solution. Even when patients are following doctor’s orders, they can still struggle to manage their disease symptoms. And when treatments aren’t working, patients are left to wonder if they should just give up.
At the end of your rope
I suspect many of you reached a point where it feels like you are tired, frustrated, and at the end of your rope because the things you are doing to feel better just aren’t enough. Here is a typical comment I hear:
“I am in my 30s (or 40s or 50s), overweight, and living with depression, anxiety, and worsening chronic illness symptoms despite proper diet, exercise, and medication. I have tried everything under the sun to get my symptoms under control, but I have had no luck. I am tired of not seeing results, getting my hopes up, and going to all of the doctor’s appointments. What do you do when you feel like you have done it all to no avail?”
Like so many, I have left no stone unturned in moving toward a somewhat normal life where chronic illness does not dictate my actions. There have been times where I, too, have wanted to give up trying to figure out how to get well. And there have been times where I have flat out given up—for a little while, at least.
Most of us living with chronic illness do not have medical degrees. Yet, we are expected to research our own diseases and be our own advocates, therapists, personal trainers, nutritionists, and so much more. We are trying to do this all while we are sick and wishing we could just curl up under our covers and never leave our beds.
Chronic illness is a long and difficult journey of trying to find answers and working toward feeling better. I don’t know what ordinary is anymore, but luckily, I have found a new type of normal that works for me. It’s about getting as close to feeling as I did before I got sick. It is about making it through the day without triggering my symptoms and increasing my fatigue. And it’s about trying to manage my anxiety and my depression symptoms, as they arise. I try to enjoy the days when my brain isn’t foggy.
It has been a frustrating experience, at times, and like so many, I have tried everything to get results. I have read hundreds of books, met with numerous doctors, visited thousands of websites, and tried various therapies from medicines to herbs and supplements and to alternative therapies, such as yoga, meditation, and physical therapy. I haven’t always gotten the desired results, adding to my frustration.
We are all on the same journey
We are all seeking good health, and we are all on the same journey. You may live with lupus, rheumatoid arthritis, diabetes, or another chronic illness or autoimmune disease, but you are certain there are answers out there to give you a sense of “normalcy” while managing your illness, similar to what you knew and felt before getting sick. We all have the desire to find out all we can by reading books, magazines, visiting online resources, participating in support groups, and visiting numerous doctors, all in an effort to get better.
Many sources of information and treatments give us hope, others help some, but yet, some make us feel worse and bring despair. We ask questions from, “How will this affect my loved ones?” to, “Will I be able to have children?” and to, “How long can I continue working?” We worry about the side effects of medication including hair loss, dry skin, extreme fatigue, and weight gain. We know there always seems to be more questions than there are answers. We are all struggling to manage disease symptoms, dealing with few results, and coping with a whole lot of frustration.
Many times, it feels like all we are is sick. It is not until we demand of ourselves and our bodies to feel better that we actually can pull our lives to a direction that resembles some kind of ordinary. However, sometimes, wanting something, working toward it and having answers doesn’t guarantee resolve. And we end up wondering, what is left to do when we feel as if we have done it all?
It is not unusual for chronically ill people to find themselves pondering what more they can do. We have two options: move forward or give up. Choose to motivate yourself by thinking about all the adversity that chronic illness has brought to your life and choose to respond as you have in the past—by not giving up. Then, [try to refocus your efforts on feeling better day by day], rather than week by week or month by month or even year by year. Take it one day at a time.
Think about all the ways you can move forward. Here are a few ways you can:
Accept yourself as you are. We should love ourselves and bodies regardless of our limitations. But, we should never give up hope that our health will improve.
Refuse to live in the past. The past is in the past for a reason. It is not for regretting or wishing but for learning from. Enjoy the present and set your gaze toward a brighter future. Continue to have hopes, aspirations, and dreams, and look to the future without fear.
Looking for the silver lining. Look above the dark cloud that is your disease and think of all the positive things that have happened to you despite chronic illness. Learn to value yourself and choose to see what is really important. Look at the kind of person you have become through your spirit, your kindness, and even your imperfections.
You may not see it
Often times, people don’t see the good things that have come from living with chronic illness. But it helps to think about the strength you’ve gained, the friends you have made through support groups, what you have learned about your illness, and the choices you have made to feel better, exercise and eat healthy. You have learned to stick up for yourself when others doubted you. And you have taken the time to slow down, and rest, and even made time for yourself. You may not see it, but you have accomplished so much despite chronic illness. Embrace these achievements even when it feels like you have nothing left to give.