When you have a chronic illness or are living with multiple life-changing conditions, it impacts every aspect of your life. Progressive disabilities are thieves who steal our inclusion in daily life, as well. Things you once did and enjoyed slowly and relentlessly are stolen from you, until even with adaptation they merely bring you frustration and irritation instead of the joy they once contained.
Your friends and former colleagues drift away because they don’t know what to say or what to do. Phone calls, video calls, and even social media posts and messages grow more and more difficult because it is hard for people who care about you to see you in pain, especially when there is nothing that can be done about it. Communication between you and former dear friends becomes infrequent, shorter in duration, further apart in frequency, and often ceases altogether.
It becomes harder and harder for you to maintain friendships and relationships as your world becomes smaller, and the only events or experiences you have to share are medical or pain-related ones. While your friends discuss the activities in their lives, you really have nothing to add unless you discuss your illness, and that gets tiresome to all involved.
While they are happily telling you about a concert they attended last week, you are all too aware that you haven’t been to a concert in several years. As they tell you about all the goings-on at work, you are reminded that you are no longer able to work, and very well may never be able to work again. As you listen to them tell you about a recent vacation, it saddens you to recall that you are no longer able to enjoy such holidays. If they talk about a wonderful restaurant they recently visited, you regretfully remember that you are unable to eat those types of food anymore, that you can’t have any alcoholic drinks anymore, and that even sweet treats are something from which you must abstain. It doesn’t make for an enjoyable conversation for either person.
When you are dealing with a variety of issues (such as sun sensitivity, food restrictions, urinary incontinence, fecal incontinence, overwhelming fatigue, blurry vision that prevents you from driving, extreme nausea, intractable pain, taking strong medications that leave you drowsy and unable to logically converse, etc.) it can make social events all but impossible.
The unexpected nature of many chronic illnesses can cause you to frequently have to cancel plans, even though you really want to participate. When you frequently cancel, or when it takes a herculean effort to include you, people stop asking you, and your social life can become non-existent.
You may have to cancel because you are extremely unwell that day, because of an unplanned hospitalization or medical treatment, or an unexpected reaction to a new medication. Sometimes, you have to cancel for reasons you really don’t want to share – like the lack of a handicapped restroom where you are going, a long walk from the parking lot to the event site, or the realization that the event is held in a historic building and you’d have to climb stairs, which you can’t do.
When the world is not as accessible as it needs to be, when illness takes your strength and energy, and chronic fatigue and malaise leave your thoughts muddled and confused, it is difficult to feel included and hard to be involved. The barriers to inclusion sometimes seem insurmountable and leave you with a quality of life that you wouldn’t wish on your worst enemy. How many times can you be the scorekeeper in the kickball game of life?
