Welcome to my first blog post!
My name is Joy Selak. While I'm not a physician, I am a sick and happy PhD.
This is a new experience for me as I am very experienced with the ups and downs of chronic illness, but not so much with the ins and outs of social media. Please be patient, and your advice and comments are welcome! It is my hope and intent that my book, blog and website,http://www.chronicinvisibleillness.com/ will be a resource for both physicians and patients, a forum where we can learn together, become more sensitive to each other’s needs and challenges and as a result enjoy more compassionate care and better outcomes for all.
I recently joined the facebook world! Find me here: https://www.facebook.com/LivingWellwithDrJoy, and "like the page" for discussions, newsworthy articles, and advice as it relates to living a life with chronic invisible illnesses.
In my book, co-authored by my physician Dr. Steven Overman, You Don’t LOOK Sick! Living Well with Invisible Chronic Illness, we identify four phases of the chronic illness experience: Getting Sick, Being Sick, Grief and Acceptance and Living Well. For each phase, I share 3 true-life stories with elements and lessons I believe are common to many patients who have been through these difficult passages. Dr. Overman offers an analogy for each phase that expresses the heart of the challenge and then adds 5 Travel Tips that target particular skills that must be acquired to move ahead. This format gives us a wealth of ideas for short blogs to keep the conversation moving. Our intent is to ‘write what we know’. As we learn from our experiences and relationships with other patients and health care providers, I will share the latest with you. For each blog, I will anchor it in the phases and stories of the book, or to a Travel Tip, if that is relevant.
For this first post, I would like to return to a subject we touched on only briefly in the book, in the Living Well phase. Item #3 on my Top Ten List for Living Well Even While Sick was “Learn to be honest about how you are feeling.” Part of that involves being candid and unashamed of your condition. It’s not your fault, you are not trying to whine or complain—you just need people to know the truth of your life so they have realistic expectations. A few months ago a freelance journalist contacted me for an interview. She wanted to talk about when NOT to tell. She had lived with a chronic condition for many years, now had school age children, but had never told them about her condition as she felt they were to young to understand and might be frightened. She had also never told her employers, fearing she would lose work. Conversely, my children were teenagers as my health began to fail and there was no hiding it from any of them. They were as anxious for a diagnosis as I was. I also had to leave my career and go on long-term disability, which meant spending 3 long years trying to prove I was sick to a for-profit insurer motivated to deny my claim.
I hadn’t really thought about the situations when it is not wise to tell. Here’s what I’ve come up with:
Family – You need their support and they need to do more around the house to lighten the load on you. While the little ones may be too young to understand, once they are older, they deserve honesty, as they have good sniffers and will know something is wrong. I would suggest children are old enough to know when they are old enough to be assigned household chores. Your spouse also deserves to be allowed into a partnership with you to cope with this reality. Don’t forget, the illness, in a very concrete way, is happening to your spouse or partner, too. They will feel helpless if they are shoved to the side, better to ask for help when you need it and let them know when you are having a bad day.
Work Place – This is really a double-edged sword. If you do tell, you may be less likely to be considered for promotion or assignments. If you don’t tell, and have more absences than a healthy person, you may be seen as a malingerer. If, in the end, you need to make a disability claim as I did, you will need the support of your human resources department. If you have hidden your failing health, it will be more difficult to access that support. My advice is to be absolutely candid with your supervisor and offer to work collaboratively with him or her to assure work gets done. Anyone beyond that can be told on a need to know basis. If someone is depending on you, they probably need to know.
Social – I think in the early years of chronic illness it is natural to need to talk about it with friends. It’s emotional and life altering; we rely on our good friends for sympathy and understanding. But if that’s all you can talk about, you may find friends turning away from the burden of it. Either you are telling too much too often, or this person isn’t quite the friend you thought. If you are in this situation, it’s absolutely natural and wise to see a professional counselor to help you cope with this overwhelming time. I’ve lived with illness so long now, it’s no longer so emotional for me, telling is a fact, rather than a story. I may say nothing more than “I have this chronic illness, so I may not be as socially available as your other friends.” Or, “I have to rest each afternoon, so my friends generally don’t call me between 3-5.” I find that the less laden the telling is with emotion, the more sympathy I receive.
