4 Lies to Stop Believing About Surviving With a Chronic Illness

I want to preface by explaining where this writing is coming from.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I have Ehlers-Danlos syndrome (EDS), a genetic connective tissue disorder that primarily effects my joints (based on the type I have — it varies from person to person). With this, I experience joint dislocations, subluxations, swelling, muscle spasms, chronic pain and so on. I also have postural orthostatic tachycardia syndrome (POTS). This is a form of dysautonomia, meaning my autonomic nervous system is whacky. With this, I struggle with low blood pressure, dizziness, tachycardia, fatigue, fainting and so on. Because of my POTS, I also have something called a Groshong Catheter, which is a central line placed in my chest so I am able to do therapies to manage my conditions.

All of that to say, I am no stranger to struggles and sickness.

I want to share four myths I believed about surviving with a chronic illness(es).

1. You have to have a village of people.

I believed that to finally be mentally secure with my illnesses, I needed to find a “village” of people to help me. This is incorrect. I saw many people who had multiple people surrounding them and they all had this deep connection based on their own understanding of each other’s illnesses. This placed a pressure on me to find a lot of people who understood my illnesses, and once I achieved this, I would finally feel OK. If you have this same mentality, I’m going to share something that will bring you a lot of emotional freedom:

You do not have to be friends with everybody.

There are many people out there who understand your illness because they have the same one. You are under no obligation to magically connect and become instant best friends with everybody who understands your pain. Yes, we have this wonderful connection because we actually understand each other’s struggles, but you do not need to be best friends with them. Maybe y’all have different personalities? This is OK. Maybe y’all have different interests? This is OK. Maybe for some reason, y’all just don’t click? This is OK.

Don’t believe you need multiple people in your “inner circle” to be mentally healthy. This is unnecessary pressure. Here’s what I have: Two very close friends who are understanding that I have different struggles/needs and are always there if I need them. I also have you, the person reading this, who in some way, shape or form relates to this writing. We may not know each other one bit, but I know at least one person in the entire universe “gets” me.

This is enough for me. Some people have this “village” of multiple people around them. Good for them! I am in no way belittling the effect of said village. I am, however, debunking the myth that it is necessary for good mental health.

2. You must always see the bright side of things.

The first thing I learned about living with a chronic illness is that it straight-up sucks about 99% of the time. We’ve all heard that thing, “living versus surviving.” An example of how I have seen this used: “I was surviving my day-to-day life, but I was not truly living. Once I started living, the flowers were suddenly fragrant again, the sun was brighter and my smile was larger!”

Here is why I think the saying should go the other way around: Are you breathing? Yes? You’re living. We are all living, in the most correct use of the term. Surviving, however, is a step beyond. Did you wake up this morning and the dark cloud around your mind was finally gone? You’re surviving! Did you actually feel well enough to get out of your house today? Congrats, you’re surviving! Surviving looks different for all of us. For some people, it is simply getting out of bed. For some, it is feeling mentally stable enough to actually answer the phone when their family calls. One thing that surviving does not have to look like though? Always being happy.

If you’re reading this, odds are you’ve got an illness. If you’ve got an illness, odds are it’s really difficult to live with. Who placed the lie on us that we have to constantly be happy, even in the midst of pain? That is a big burden; please get rid of it. It may end up being the thing holding you back from surviving.

3. We have to blend in with others.

I was skilled at hiding my pain and struggles in order to blend in with the people around me. This led to a lot of strife in some close relationships of mine. Because I was such a pro at hiding my pain, when it became unable to hide, I seemed like I was faking it.

Now, I know it is not my job to give people a reason to believe me, they should just trust my word. But when I took a step back and looked at things from their perspective, I understood where they were coming from. I was healthy, no issues whatsoever — a complete lie by the way — then all of a sudden, I am unable to get out of bed for three days straight? I understand it seems shady from their perspective. However, all of this could have been avoided had I not believed I needed to seem healthy on the outside.

If anything, we should try and stand out because it is a great educational opportunity! Now, it is almost impossible for me to blend in, considering I’ve got a literal tube hanging out my chest (I respectfully call it my BoobTube). I was terrified to get this necessary and helpful thing, simply for the fact I could no longer blend in. That was my natural introvert thinking. But who says we need to blend in to be “normal?” Some of the most influential people in our world are influential for the very fact they stand out. Plus, who’s to say other peoples’ normal is the standard for normalcy across the board? Anyone who has ever been sick or currently has an illness has, at one point, had to adjust to a new normal. Why is the “healthy person’s normal” more acceptable than ours? It’s not. So, if this is a mindset you’ve been trapped in, please try and get out of it. It is not a healthy standard to have.

4. We must accept our illness.

You may be thinking “the only way I’ve come this far in my battle is accepting it’s real!”

Here is why I do not agree with this: I personally believe there is a difference between embracing and accepting. While the conditions I have were deemed chronic, I would not survive without the hope of a better life. I believe that, even if I have these conditions until the day I die, one day it will be better. Not necessary gone, but better; more livable, if you will. I have embraced my sickness and pain, but I have not accepted it. I accepted this life I was living for a little bit, and it was some of the darkest days I have faced. When I accepted it, I lost my hope. When I embraced it, I found my strength. My bad pain days would run my life if I accepted them. But I embrace them. I embrace that they are here, that this is a battle I must fight, and I will come out of the battle stronger than before. When I stopped accepting my illness, I accepted my peace.

When I recognized I had taken on these lies, I knew I needed to find the truth. This is the freeing truth I have found. I hope you find them as freeing as I did.