Never, Never, NEVER Give Up

The sick are tempted to give up in many ways. The most tragic is to give up on living in response to unrelenting pain. Hopefully before this level of despair takes hold, we can find ways where persistence can move us toward a better life, even with illness, and even while living with pain and reduced function.

The first path is to never give up until you find a competent doctor, experienced in dealing with your symptoms or diagnosis. The next step is to begin effective treatment. For many of us, just accomplishing this takes years. Patients with vague, hard to diagnose illnesses are often sidelined by doctors who don’t know what to do with them. Our health care system pays for procedures and interventions, and if your doctor doesn’t connect you with the tools in his or her toolbox, you may be treated, literally, as if you are not worth much. Doctors may respond to their own lack of expertise by blaming the victim, implying that if the fix isn’t obvious, you must be faking, malingering or mentally ill. Understandably, after experiencing this kind of treatment, patients can be tempted to give up looking for answers, taking refuge in bitterness, or magical thinking about magical cures, or by taking the mediocre doctor’s prescription to heart and deciding to ‘just live with it’.

A better solution is to fire the doctor, move on, and never give up until you meet the person or, more likely, the team that can offer help. There are outstanding physicians out there, and they are not necessarily at elite institutions. They are in small towns, and in small practices. Thy may have the wisdom of years, or the fresh insights and enthusiasm of youth. They may be GP’s or internists who will know where and to whom to refer you. Keep looking. Once you have found your partner, know that settling on effective treatment may also take time, a lot of it. You are unique, your symptoms and your system is unique, it may take dozens of trials and adjustments and the aid of many providers before you hit on the combination that helps bring your symptoms and system into better balance. This persistence does not guarantee a cure, or even the elimination of your symptoms, but it may mean you can find relief that keeps your illness from progressing and makes your symptoms less severe, so that you can live more fully.

Finally, making peace with your new life is not the same as giving up. Wailing about all you have lost and how much you want your old life back is part of the grieving you may need to go through, but it is also stressful and exhausting. At some point we need to accept our new life with illness, while never giving up on making it the best life it can be. These aren’t mutually exclusive, but two parts of a healthy whole.

Put Yourself First: 5 Tips to Better Manage Chronic Illness

In order to successfully manage a long-term illness, I had to learn to Put Myself First. This was hard for me, and I think it may be hard for many women, as we are often brought up to be pleasers and caretakers. It required a new level of honesty about my illness, but as I made this change, I found friends and family appreciated my candor and were willing to work with me. Over time, I realized that communicating my needs and limitations was far easier than making myself sick trying to please others, or pretending to be was someone I was not. By respecting my limits, my friends and family were able to take a positive role in helping me out and maintaining our relationship in spite of illness. Here are a few things I learned to do that really helped.

1. Avoid unnecessary time commitments.

            I live in a friendly neighborhood and many of the women make walking dates so they get to visit and get in their exercise at the same time. I learned that I should exercise when I felt up to it, not on a pre-determined schedule, and that adding talking to exercise was too tiring. I told my friends this, and added that my solitary exercise time was  also important to me for sorting out my day and my thoughts.

2. Let friends know about your quiet time.

            I rest from 3-5 each afternoon, as regularly as I can. I learned that I needed to let my friends know this schedule, so they wouldn’t call or interrupt this time. They have been very respectful and, I think, appreciative that I’ve offered them this way to support our friendship. Now many of my friends   start a phone conversation by asking, “Are you resting right now?”

3. Let friends know your boundaries of activity.

            Similar to the above, when we have occasion to travel with friends we let them know that while we enjoy going out to see the sites with them, I need to rest in the afternoon, otherwise I won’t be able to enjoy our evening together. What usually happens is our friends decide they want a rest period, too!

4. Clarify your limits before agreeing to a new task.

            I volunteer for our local professional theatre and have enjoyed many leadership roles over the years, but before I agree to chair a committee or lead a project, I always make sure others involved know I have a chronic illness and it limits my energy and sometimes my reliability. I’ve learned to pace myself, but having this out in the open takes a lot of pressure off of me.

5. If you are having a bad day, say so.

            When I’m having a flare, I generally get very quiet. People may think I’m mad or sulking if I don’t let them know I’m coping with symptoms and distracted by pain or fatigue. After a while, the people close to me learned to ‘see’ the flare and often brought it up themselves.

As I learned to Put Myself First, the task of telling people who I am and how I need to live became practical and factual, rather than embarrassing and emotional. I wasn’t whining or complaining, just being real, and people took it that way. It got to be no different than sharing any other unique character trait that may limit or order a person’s life. One of my unique traits just happens to be that I live with illness.