Our Chief Medical Officer Dr. Charisse Litchman, who has treated neurologic patients for over 30 years, offers some advice to patients suffering from chronic illness.
The mental and emotional aspects of living with chronic illness take a great toll and often remain unaddressed. Much of this stems from people viewing their illness as a burden to those around them. Making the most out of life requires drawing both external and internal boundaries for yourself and having the resolve to stick with it. This is often difficult.
Remember the old adage “Choose your friends wisely”? If people avoid you because of your chronic illness, that is a reflection on them and not you. Their discomfort at seeing your disability arises from the fear they have for themselves: this could happen to me. Others may not have the emotional capacity to be active participants in your journey – some may rally around you, but others may not be able to because it makes them feel insecure.
Most important, though, is to not let your illness define you – not always an easy thing if getting around requires a walker or wheelchair. The personal qualities, passions, and talents that defined you before you became ill have not gone away; you may have ignored them because you have had to focus on getting a diagnosis, find a care team you trust and becoming established on a treatment plan, but now it is time to get back to who you were and reclaim what made others attracted to be around you in the first place. Define yourself, not by your illness but by your strengths. Be proud of who you are despite your illness, rather than who you aren’t because of it. Maybe you will find the greatest satisfaction by being an advocate for others suffering from the same affliction; or maybe just by continuing to do what you have always done before you were diagnosed.
Developing the self-confidence to like yourself, allows you to stop trying to please people. I remember watching a woman on the beach in a wheelchair surrounded by her friends who was obviously wishing to be splashing in the water. Rather than expressing this wish to the friends surrounding her, she expended so much energy trying to entertain them, telling joke after joke, that she must have exhausted herself. Were her friends actually enjoying her comedy routine? I am not sure. But I am sure that her laudable efforts were compensatory and served to set her apart from those who tried to help her.
One of the more difficult conversations I had with my patients with chronic neurologic disorders, including MS and epilepsy, in whom their illness was not outwardly apparent although it was causing a great impact on their lives, was who to share their diagnosis with. Did all their friends need to know? Should they tell their coworkers and HR departments?
The first one is an easier question. Choosing which friends to tell depended on whether you believe they will be able to help you in your journey and if this information will bring you closer rather than create an insincerity in your relationship. It may be a good time to prune your rolodex of friends: if they aren’t worth sharing this very personal part of your story, perhaps they aren’t worth the effort.
Of course, remember that everyone has their own story and needs a good friend. So, if someone is worthy of your friendship, make sure you are worthy of theirs. Be there for others as you want them there for you. Set up boundaries-listen to your body and mind. If you aren’t up for running an errand or if conversational topics are hitting too close to home, tell your friends. Teach others to respect your limitations and needs as you need to respect your own.
Telling your co-workers and HR about your illness opens up a new can of worms. Certainly, if you have disabilities that need to be accommodated-a ramp for your wheelchair or reduced hours if your intractable migraines won’t quit-then you need to communicate this loud and clear. But what if your illness isn’t outwardly apparent? If you tell everyone you have seizures, then perhaps when you mess up a project or miss a deadline, your mistakes may be attributed to your illness. You may not get credit when it’s due, and you may feel you were inappropriately passed over for a promotion. While you define your performance by your successes, you may find that others define your performance in the context of your disease. There is no right answer to this question. My advice to my patients has always been to imagine the conversation in your mind before it occurs and let that guide you. Prune your confidences at work as you may prune your inner circle of friends.
What is most important, however, is that you prioritize your needs, both emotional and physical. If everyone is taking the stairs and you need the elevator, tell them you will meet up. Just as you don’t need to be that woman on the beach overcompensating with jokes, do not push yourself harder at work with longer hours, taking on more shifts, or volunteering for an additional project or two. Just as you need to create boundaries for others, you need to create them for yourself.
Embrace your identity, both the healthy and the unhealthy parts, and continue to grow by loving and respecting yourself.
We at BeCareLink offer two apps (BeCare Neuro Link and BeCare MS Link) to help you with neurologic condtions, both screening and monitoring. We help you not only to track your physical condition, but also your emotional well-being. The views above are those of our Chief Medical Officer. We would love to hear from you about how you approach your illness with friends and at work. Please either respond with a comment or if you would like to be featured in one of BeCareLink’s blogs, send us your story at [email protected].