Following the diagnosis of a chronic or life-threatening illness there will be physical and emotional changes you experience over time. In my travels, chronic illness patients present a host of common concerns about how their ability to maintain their relationships with friends and family while trying to maintain their health.
For those who have never experienced a health challenge, the idea that adjusting to the diagnosis and a treatment plan should be as simple as going to the medicine chest. They think that opening a bottle and taking a pill is the answer to all the problems. Unfortunately that’s not the scenario for most tackling a health challenge so sensitizing friends and family to your “new normal” is important. Use the following ABC’s as a guide to educating the world around you about your status and how to remove the social stigma that often accompanies illness.
Friends and family will need to be educated on the disease process. This is not general information you share with the whole world, only those you believe will be impacted on a regular basis. If you experience pain or fatigue during certain times of the day or following a treatment then let them in on the process. Make plans that fit your physical and emotional schedule. Too many patients feel that their friends and family become annoyed because you cancel plans often or at the last minute due to illness. Unfortunately if this is a pattern you begin to notice a reluctance by others to invite you to attend events or outings; this is why sharing your experience is important. They need to understand that this is not a personal cancellation, but at that moment the body is dictating the rules of the game.
Having a good balance between work (if you’re still able to work) and play is important. Your circle may need to understand that going out both weekend days is too much so you’ll have to make choices. Balancing energy is important. You may need to brainstorm with your friends about how to maximize the time you have to spend together. Maybe you decide to spend one evening at home watching movies and then you can make plans to go out another night. We have a finite amount of energy. When we expend all our energy at once it will take time to generate new social resources.
We can’t force others to understand our experience. When we have the consciousness to share our experience without being a victim, understanding is more readily available. If all you are able to convey is negativity and despair you will push others away because they can’t absorb the negativity. They may be willing to listen for a while, but they didn’t sign up for a lifetime of drudgery. Establishing a platform of self-empowerment will garner respect and understanding from others. They will be more compassionate and less judgmental. You won’t become the outcast, but simply part of the circle that has special considerations that need to be taken into account.
It’s easy to become a social outcast when diagnosed with an illness. The wall that’s created is more out of misunderstanding than disinterest on their part. Before friends and family have time to make judgments about you, let them in on the truth of the situation. Keep them in the loop so you aren’t perceived as trying to sabotage the event or everyone’s fun. As the person facing a health challenge all you want is to continue to be included. That process starts by including your loved ones in on what really is happening with your health and the implications the challenges have on your daily life.