“But you don’t look sick…” is a phrase that so many people battling chronic illnesses hear all the time. There are so many hidden illnesses in today’s world. Maybe these existed a long time ago and they just weren’t talked about, maybe we’ve just learned more through modern medicine or maybe there’s something in the environment or in the foods we eat that exacerbate the conditions — who knows.
Invisible illnesses can be anything from Crohn’s disease to arthritis to endometriosis and more. Mental health is absolutely one of the biggest invisible illnesses that effect a large portion of society.
I have several conditions that cause me pain and issues that are unseen. I have endometriosis, polycystic ovarian syndrome, anxiety and eczema. The eczema can be a more visible illness when I have an outbreak of it, especially because my outbreaks are usually on my hands.
As I type this column tonight, the movement of my fingers over the keyboard is painful. Some of my fingertips have no feeling in them because of the dried, cracked skin covering my finger. Extreme movement or bending of some of my fingers causes cracks and bleeding. The steroid creams I’ve been given only work so well—I sleep with the medication on, with a pair of gloves on. When I wake, my skin is smooth and soft, but within 30 minutes of the gloves coming off, my skin is drier than it was the night before and feels tight and painful. Typically, when I have an extremely bad flareup, the only thing that can help is a steroid injection or dose of Prednisone. But that comes with a litany of side effects.
Yesterday I was shopping for clothing and ran my hand along the top of the hanger (along the shoulder of the shirts), trying to find my size, the skin on my finger snagged on the material of one of the shirts and pulled the skin so hard that tears came to my eyes. I had to check and make sure I hadn’t drawn blood.
When you mention eczema to someone, they always say something like “Yeah, I have dry skin too.” But it’s so much more than that. It’s an extreme that you can’t imagine until you deal with it. Lotions don’t really help, they either soak in so fast that there’s no relief or they sting like crazy. And who has time to apply lotion every 5-10 minutes? The eczema ointments I’ve been prescribed are so oily that they stain my clothing if I don’t wear a bandage and to be honest, they don’t make a bandage that can cover your entire hand. At the present moment, that’s what I would need.
Endometriosis and PCOS combined can cause so many problems and issues for women. The hormonal imbalances alone wreak havoc on our bodies — many women with these conditions have an overgrowth of hair (hirsutism) or thick, dark hair that grows in places it shouldn’t on women. Many who suffer from these conditions have thick and dark facial hair.
As someone with both of the conditions, I can’t really separate my symptoms from each other and pinpoint which one is causing which issue, but I can give you the laundry list of issues that I suffer from based on these conditions.
Anxiety (caused by increase cortisol levels), insulin resistance, painful periods, heavy periods, cramps so bad during periods that they make me nauseous and dizzy, muscle and joint aches, fatigue, vitamin deficiencies, infertility, irregular periods, mood swings — the list goes on.
I think the reason a lot of people with invisible chronic illnesses, women specifically, don’t talk about them is because just mentioning it opens you up to so damn much unsolicited (and mostly unhelpful) advice.
Mention infertility in a room of women and I guarantee that while some of those women have TRULY had fertility issues, some of them will think that because they didn’t get pregnant their first month trying that they have fertility issues. Medically speaking, infertility isn’t until you’ve been trying to conceive for a year or more without getting pregnant.
In that same group of women, you’ll have the one whose mom’s cousin’s best friend’s daughter had fertility issues and after sex did five pushups and a 30-minute handstand and got pregnant. So NATURALLY (sarcasm there), that should work for every woman trying to have a baby. Well guess what? My favorite analogy to use is that it doesn’t matter how good the receiving team is on the football field if there isn’t a football to be caught — and one of the major issues with PCOS is that women with it don’t ovulate. So, it doesn’t matter what type of acrobatics they do, pregnancy won’t happen.
And I know you’re probably reading this and thinking I’m some bitter woman who just can’t get pregnant and while that has been true at different times in the 11 years that my husband and I have tried to have a baby, I’ve come to the realization that it’s not just me. Infertility feels like a solo battle. It feels like you’re on a deserted island and that no one truly understands. Even when you have a friend that gets it, they don’t get it because everyone’s situation is different, every relationship is different, everyone’s hormones are different, and so on. But I’ve come to realize that while we may all feel like our battles are solo and they may be because of those differences, we all have one thing in common…FEELINGS.
Sometimes the people around us don’t take those feelings into account. They’re just there to throw out useless advice. And don’t get it twisted. I KNOW in my heart of hearts that the advice to “just relax and quit worrying” is well-intended, but what’s that old saying? The road to hell is paved with good intentions. It may be coming from a place of love when you tell someone struggling to have a baby that they should just pray about it…but if they truly want a baby, don’t you think they’ve thought of that? That they’ve tried it? It’s possible that they feel like their prayers aren’t working. It’s possible that they are tired, defeated and just need to talk to someone who will listen without giving useless advice.
My sister and I are very close and we have learned that sometimes our venting sessions call for advisement and sometimes the venting session is just for a listening ear. We’ll ask each other, “Do you expect advice or just some sympathy?” or something like, “Am I helping you bash who you’re mad at or helping you solve the problem?” It’s surprising how much better we can meet each other’s needs or expectations when we know what the expectations are.
Next time your friend is trying to talk to you about something like a chronic illness, a mental health struggle, or a relationship problem, try asking them what they want from the conversation. Sometimes you don’t have to say anything at all. Oftentimes just a simple, “That sucks and I’m sorry you’re dealing with that. I’m here for you,” is the best thing you can say.