4 Areas of My Life That Are Affected by My Invisible Illness
My chosen perspective in life often misleads people. You see, I’m a happily married woman, I have three children, I home school my oldest who is in kindergarten and I volunteer at church. If you evaluated me by my achievements alone, you probably wouldn’t suspect that I have a chronic illness. Based on my list above, some would describe it as an invisible illness, and others would see it as a high functioning illness. Those are great ways to explain my condition to someone who is trying to make sense of my normalcy, followed by random absences or low energy days. That being said, I wanted to share a few things that explain what I experience.
There isn’t enough sleep in the world. If I am running behind, if I oversleep, if I have bags under my eyes, if you see me on Facebook at 2 a.m. – it’s not as simple as it looks. I can lay in bed for hours. I can meditate, take supplements, eat well, set alarms, etc…my body behaves irregularly and inefficiently. I can try to conserve energy on a good day, but it will just lay awake at night— unused energy is like an unsatisfied itch. And it’s gone the next day. I don’t have roll-over energy. So if I am at the birthday party Saturday and cannot get up for church on Sunday, it’s not due to poorly allocated energy. It’s not avoidance or lip service. I seek to honor my commitments, however I must care for myself with patience.
I find it hard to spend time around people who focus on my illness, yet it’s just as hard as it is to spend time with people who don’t believe my illness exists. Much like how everyone’s attention and small talk shifts to a baby when a woman gives birth. When people encounter chronic illness, it becomes a conversation starter, followed by questions and input. Let me be clear: I am happy to discuss my health with you, but much like how postpartum comes with unsolicited advice, the same occurs with chronic illness. It’s true that what you have to share may be very helpful, so if you would like to offer insight or advice, do so considerately by asking first; these conversations can be on sensitive subjects. If I ask to change the subject, it’s safe to assume that I do value our friendship, but I cannot open up right now. What if you are unaware that I have tried to do XYZ for months and it’s not helping? What if my doc just dropped a bombshell and I haven’t told you yet?
It’s been a few years since I have worked full time, since I stay home with my children, but I have held down a 60 hour work week with chronic illness before, and it’s retched. My work day began at 8 a.m. and I would be on my feet all day. My vision would be weak some days due to fatigue, so this affected my performance. I would occasionally have an urgent doctor appointment come up, or I needed to do lab work for further diagnostics. This created tension with my employer. I had a great boss at the time, he respected me and my health needs, but empathy didn’t keep the lights on. Five to six appointments a month complicated things for him. My supervisor was far less gracious as she would go as long as possible without speaking to me during the work day, because she didn’t believe I was truly sick. I hear people talk about how valuable it is to stand in your truth confidently, but my confidence is exactly why people like my supervisor belittled my condition. “Looking OK” or being “functional” created challenges of their own. I continue to stand in my truth and advocate for myself, but it’s important to know I could be tired of having this illness, no matter how well I hold it together.’
Similar to the paragraph about energy, but a category of it’s own…creating a family, maintaining a marriage, keeping house, preparing meals, etc. While my health affects all areas of my life, that doesn’t mean my life is falling apart. I create systems that safeguard my interests and priorities. For example, when I realized that I couldn’t keep up with my children’s messes, I got rid of 3/4 of their toys. When I realized I didn’t have energy to make four different meals for all of our sensitivities and texture quirks, I decided to limit our meal planning to six basic diners and a “fend for yourself” night. I feel it’s crucial to get to where I lead a life I can maintain. Maintaining systems and organizing rooms are not my strengths, but I do that uncomfortable work because I don’t have energy to maintain these things if they go off the rails.
I hope that some of this sheds light on what you are truly seeing when you look at someone with invisible illness. It doesn’t have to be a lonely journey; the truth is we will always have more in common than not. I am always on the look out for allies, people who will meet me where I am and point out my strengths when I am daily faced with my weaknesses. Thank you, in advance, for being people who see that there is more going on beneath the surface and seek to understand.
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