About a week ago I was diagnosed with Chronic Pain Syndrome and Ehlers Danlos Syndrome. My doctors also want to look for POTS. In that short amount of time I’ve realized just how little is understood about chronic illness.
The doctor who diagnosed me admitted chronic illness is not well-understood by the medical community. So what does that say about the general population’s understanding? If my doctors don’t even understand what’s going on with me, how can my friends?
I joked to my mom that I wished I could give people a crash course on what it’s like and what it means to have chronic illness. My mom suggested I write a blog post, so that’s what I did, including asking my friends what questions they had. I knew I had some things I wanted to talk about, but I also wanted to know what other people were wondering.
I would like to clarify that I am by no means an expert. While I’ve been sick for several months, I’ve only had diagnoses for a week and, there is a lot left to learn. Because of that, I asked the opinions of some other people I know who have fought this battle far longer than I have. This is simply a collection of some thoughts they’ve had and many things I’ve learned on my journey the past few months.
A few terms you should know.
Just like everything, chronic illness fighters have their own lingo. Here are a few terms I’ve learned so far, and a couple abbreviations I’ll be using in today’s post:
- Chronic illness: this one may seem obvious, but I still think it’s important. Chronic illness is anything long-lasting, oftentimes being lifelong. It may operate in cycles and be worse certain times than others, but, for most people, it will never truly be gone.
- Zebra: Anyone who has a chronic illness. The term originated from the fact that doctors are told to look for the “horse” not the “zebra”, because a horse is the common thing and the zebra is the rare thing. Chronic illnesses are rare, and patients are often misdiagnosed for a long time before the doctor finally looks for the “zebra.” It is especially used by people with EDS.
- Spoonie: Also a term for someone who has chronic illness. This term originated from the spoon theory—a very interesting way of explaining to regular people what it’s like to have chronic illness. I highly recommend reading the theory, which you can find here.
- EDS: Ehlers Danlos Syndrome
- POTS: Postural Orthostatic Tachycardia Syndrome
It is a constant battle—one we get really good at hiding.
Already, I’ve learned how to fake it. How to put a smile on my face and convince the world I’m fine when my entire body is hurting, feeling like it’s going to fall apart. Looks can be deceiving.
I asked some friends of mine with chronic illness what they would want people to know, and it was this: don’t assume we’re fine simply because we’re able to smile and act natural.
Questions are okay.
I can’t speak for everyone, but, personally, I don’t mind questions. You can ask me whatever questions you like and I will be more than happy to answer them—and if I don’t know the answer, I’ll find it.
I want you to understand as much as possible, so please, please, please ask me questions, and be prepared for in-depth answers.
We aren’t crazy and we aren’t making it up.
In the months spent looking for answers, I went through a period of time where several doctors tried to tell me it was anxiety, despite my constant reassurances that I was not anxious. Anxiety is a very real problem for many people and can certainly cause some of the symptoms I had, but I knew my body and my mind and I knew that’s not what it was. Having doctors not believe me was incredibly frustrating—ironically, it was the only source of anxiety in my life.
Please, if your friends are sick—whether or not they have been diagnosed with chronic illness—take them seriously. Having people believe me meant everything to me, and made me question my sanity just a little bit less.
Sometimes we can’t do things, but that doesn’t mean we don’t want to, so please don’t stop inviting us to things.
Sometimes I’ll be having a rough day and won’t be able to respond to your text. I promise I’m not trying to ignore you, I just don’t always have the energy for a conversation. And if you see me on social media when I haven’t texted you back, don’t take it personally. I’ll get back to you as soon as I’m able.
Sometimes I’ll have to cancel plans or won’t show up to events, but please don’t stop inviting me. I want to go, I really do. I’m possibly the most extroverted extrovert to ever live, and the lack of social interaction is incredibly difficult for me.
When people invite me to things, it makes me smile so wide it feels like my face will split open. The fact that people still want to see me, even if I can’t interact the way I used to, means the world to me.
A few phrases to avoid.
Well-meaning friends often say things that do more harm than good. Here are a few of those questions or statements and an explanation of why they can be hurtful:
- “How are you feeling today?” While this comes from a place of love and concern, it’s a difficult question for me to answer. Nine times out of ten, it’s a lie to say I’m “good”. But, if I answer honestly, I put the person in an awkward position. No one knows how to respond if you say you feel terrible. Personally, I find it easier to answer ones that don’t directly address my health, such as “How are you?”, “How’s it going?”, or “What have you been up to lately?”. By not specifically referencing my health, you’re giving me more options for my response.
- “I hope you’ll get better soon!” & “When will you be better?” I understand and appreciate the sentiment, but I’m never sure how to respond. By definition, chronic illnesses don’t go away. They’re for life, and most have no treatment. It’s simply about learning to “manage” your symptoms—aka, learn to operate normally despite the pain, fatigue, brain fog, and everything else. To you, you’re expressing care, but, to someone who’s chronically ill, you’re simply reminding them they likely never will be better, and also making us feel like we mean less now that we’ve been diagnosed with chronic illness.
- “So what does this mean for your future?” I don’t know what it means for my future. I don’t know what it means for college, for next year, or even for tomorrow. All I can handle is today. I’m taking this one day at a time, and I have no clue what will happen in my future yet, just that the Lord will carry me through anything that may happen.
- “Well, my sister’s niece’s best friend’s aunt had your symptoms and she did *insert some strange treatment that sounds vaguely sketchy*. You should try it!” First off, never compare two people’s struggles with chronic illness, because no two experiences are the same, no matter how similar their diagnoses. Second off, some of the treatments people suggest are actually extremely concerning and I don’t plan on touching them with a ten foot pole.
- “It could be worse. It could be something terminal!” Again, you’re trying to assure us, but please don’t compare trials or illnesses. All it does is make us feel guilty for struggling with something that, according to you, shouldn’t be that hard.
If you have said one of these things to me or someone else with chronic illness, don’t feel bad. Like I said, they come from a place of love and concern, so I’m not angry with them—in fact, I’m grateful you care enough to ask—and I’d probably ask the same things if our roles were reversed. But, I don’t want all our conversations focused on my health, and when they are, I’d rather them be focused on helping you understand what it’s like rather than on how I’m feeling in the moment.
A few questions from friends.
Alright, now to the questions from my friends and family. This was actually really fun for me, as it both helped me learn more and helped me educate others on what this is like:
- “How does it affect your daily life?” It’s really hard, especially right now, while I’m very new to being a Zebra. Because chronic means my symptoms are lifelong, I have to learn to operate normally despite them. There will still be days, however, where I can’t get out of bed because I’m in so much pain. It also affects my ability to focus, which makes things such as school incredibly difficult, and some chronic illnesses are made worse by heat, which makes being outside in high temperatures hard. It’s also very shocking for people (like me) who developed their chronic illnesses very suddenly, going from an incredibly active lifestyle to barely being able to shower. Eventually, I’ll get better at managing my symptoms, but it will always affect my life in some ways.
- “Can anyone get them?” Yes! Certain chronic illnesses are more common in some people than others, however. For example, ones like EDS, are often genetic. In others, women are significantly more likely to get them than men. Some, on the other hand, are caused by things like tick bites, so no one person is more susceptible than another.
- “Does your life or attitude change once you know you have a chronic illness?” Yes and no. I’ve already explained the effect it has on my life, and those changes can certainly affect my attitude. It’s really easy to slip into frustration over what I’m no longer able to do and there’s certainly a feeling almost of grief because I’m losing a lot of things. But my attitude doesn’t need to be affected—no matter what I can or can’t do or how poorly I’m feeling, the Lord is on my side and will use this for His glory. I can rest in that, no matter how little else I understand.
- “Do you want to be treated like you’re completely well?” Yes and no. I’m not going to be able to do everything I used to do, and there will be times I have to cancel plans last minute because I’m having a flare up, and I want you to be aware of that. But, I’m still an independent 17-year-old girl who likes to do things for herself and doesn’t need a babysitter. I’m still me and I want you to realize that, but I don’t want you to be surprised if I’m unable to do something that used to be normal for me.
- “How has God used your illnesses for good?” I’ve only had my diagnoses for a week, so I still have a lot to learn and a lot of time (the rest of my life) for the Lord to use those, but in that time He’s really increased my understanding of what it’s like. Over the course of being sick, before I knew what was causing my symptoms, the Lord increased my trust in Him and gave me more time for things like writing and drawing.
So, what’d you think of my crash-course? Would you want to see more similar posts, as I continue this journey and learn more about what chronic illness is like? If so, what questions would you like answered and what aspects of chronic illness would you want me to cover?