Often times when we think of a chronic illness the image that comes to mind are older people. You may also think about conditions like high blood pressure, diabetes or cancer. Though these observations are both valid, that limits the definition and leaves out a large demographic of people.
Until I developed a chronic illness, I was of the opinion that I would have to be at least 50 years old be be in that category. I was blissfully unaware that there was a whole world happening around me that was invisible. As I have come to learn, most of us are not equipped with the vocabulary to discuss diseases. This leads to a tone of pity or shame when the topic is brought up. Often times I hear comments like “It’s going to be okay”, “You are looking good” or my favorite Nigerian exclamation “Ah… pele o.” Though often times the words are well meaning, it comes off as disingenuous.
Most times if you are meeting someone with a chronic illness they have been living with it for some time. It may seem deceptive but you learn how to look fine. In many ways that is a double edged sword because it may seem like you are faking. How can you be fine one day an not fine the next? How much or little you see of someone with a chronic illness is related to how many spoons they have. At this point, you may be wondering. What does a spoon have to do with a chronic illness?
Whats with the spoons?
The spoon theory was coined to describe the concept of chronic diseases to another person. For me, I like to think of it as a measure of energy levels. Each day depending on what I did or did not do, I loose spoons. Life becomes a balance between trying to navigate what you want to do with the energy levels you have. On days full of spoons things get done on time and when the spoons are running low it is time to rest. I like to remember this analogy often to remind myself that the human body is always changing. There was a time when I had the luxury of abusing my body, things are now the opposite.
How can I help?
At times I get asked “What do you need?” or “How can I help?” For most people the concept may take a while to sink in. Sickness is usually talked about as a passive phenomena that resolves itself in 2 to 4 weeks. For you to get into the mind of someone with a chronic illness, lets do an exercise.
Imagine if when you got sick the last time, you did not get better. How would that make you feel? Would that affect your friendships and relationships? How about your work? What kind of person would you become? Now use this lens to look at someone who has been ill for 5 years.
In my case, I need is love, support and NO judgement. It is hard enough waking up in an unpredictable body especially because I am still undiagnosed. When I say I am not feeling well, believe me. You may be tempted to push me but just know deep down that I do not appreciate it. In my case pushing when I am in a flare up only makes things worse.
If you have a chronic illness, I would like to know one thing that it has taught you. I shall be waiting for your comment 🙂