It's crazy how excruciating physical pain can give the phrase "endure to the end" a whole new meaning. It never occurred to me that I would ever have to suffer such an excruciating level of pain in this life. And it never occurred to me how this illness would change my life in every aspect. Through it all one of the things that I've learned is that suffering, of any kind, can be an incredibly lonely journey. I also believe that it doesn't have to be. God did not put us on this earth to fight our battles alone, and yet there are people suffering all around us that we are completely blind to! And even when we are aware of who is suffering, we do nothing. No wonder suffering is such a lonely journey! I would personally like to break the status quo, speak up, and speak out. The more we know about someone's form of suffering, the more we can do to help. My form of suffering in this life is not something that is well known and is highly misunderstood. So my goal here is to kill the misunderstandings and hopefully help someone in need. So here's five things that everyone should know about chronic illness:
1. We're not crazy. We're just sick.
Some of the symptoms that I've experienced throughout my illness include, but are not limited to: stomach pain, excruciating lower abdominal pain, back pain, muscle pain and weakness, joint pain, joint cracking, stiffness in neck, fever, seizures, tremors, anxiety, panic attacks, depression, etc. etc. etc. This pain is REAL PAIN. Despite the fact that it's real, my mother suffered those same symptoms, with an addition to many more, and the doctors that supposedly know what they're doing told her that she was crazy and that they "didn't even know what to do with her anymore."
Those kinds of things happen to people with chronic illness everyday simple because chronic illness is so misunderstood. People that suffer on this level just want everyone to understand that we're NOT CRAZY. We're going through a really hard time right now, and we would like all of the understanding, love, and support that we can get. Extreme suffering is not the equivalent of insanity. Insanity is watching somebody suffer horrendously, doing absolutely nothing to help them, and then expecting them to be fine all by themselves.
2. I look good... So what?
There have been times throughout this trial in my life that I've tried to explain my illness to somebody and they respond with a discomforting, "Well, you don't look sick!" I've also had times where I've been seen in public by somebody that is semi close to me and they respond with an assumption of "Oh, you seem to be doing so well!" Through it all, I strongly believe that looks can be deceiving. People with chronic illness, including myself, spend most of their hours of the day at home, healing and coping with pain. When we find the strength to venture out into public, it does not mean that we are magically better and completely living normal lives now. It simply means we cannot live our entire lives in bed. Not only that, but we only go out in public on days that we feel semi-well. Of course you're not going to see us on the days that we're having seizures, violently puking, and screaming out in pain. People with chronic illness have good days and bad days. I personally believe that no matter what day it is, good or bad, everyday is a gift with new insight and beauty just waiting to be discovered. I personally would like to live every precious day to the fullest, whether I'm sick or not. Some days the insight that I discover is simply that life can be more painful than I ever thought it could be. Other days it's simply a feeling of gratitude in my heart for the love that God has for me and for the blessing that I'm still alive. Whether or not I look good, doesn't really apply to whether or not I feel good.
3. Somehow the phrase:"Well at least it's not cancer!" doesn't make me feel better...
On Facebook and various other social media sights, I have seen so many articles and posts about people that have cancer and expressions of how thankful they are for all of the love and support that they have received through it all. Also, on multiple occasions I have heard or read the phrase "Well... at least it's not cancer!" Now, let me clarify: in no way am I putting down cancer, or diminishing how huge of a hardship that is. I understand that cancer is incredibly hard and is a battle that is fought by so many people, some of which do not survive. What people don't understand, is that chronic Lyme disease and cancer share a lot in common. Cancer is painful. So is Lyme. Cancer kills people. So does Lyme. Both hurt. Both kill. So why is Lyme and other chronic illness and autoimmune diseases treated so differently in the social aspect of things?
In hindsight it's impossible to understand what someone is going through without going through it yourself. I suppose that goes for any form of suffering. Nobody can completely understand what I'm going through, but that doesn't mean that you can't put forth effort in someone else's behalf. You can always educate yourself. You can always show some support to someone in need. You can always send love in the direction of someone who desperately needs it. Don't frivolously throw out meaningless phrases such as "Well at least it's not *insert some other possibly horrendous trial here*" We all suffer in some way in this life. So shouldn't we try a little hard to love and understand one another instead of comparing our levels of pain to others? I don't know about everyone else, but for me, I'd like to live a life that is fulfilled through loving and serving others, ESPECIALLY when they are suffering. If we all tried a little harder to do that, I think the world would generally be a better place.
4. I'm not on a diet because I'm trying to lose weight. For me, it's either diet or die.
"YOU are on a diet?!" Yes. Yes I am. I truly believe that one of the main sources of health problems is the food that we choose to put into our bodies. I've had lots of people look at me like I'm crazy to be on a diet because I'm already so small. To clarify, I don't diet to lose weight. I diet so I don't die. Part of my healing journey is consistently doing things to strengthen my immune system. Bacteria cannot exist in a healthy, toxin free, alkaline environment. So staying away from GMO, acidic, and toxic junk food is probably my best bet for getting better someday.
Most people that suffer from autoimmune disorders quickly learn that changing their diet simply makes them feel better. I had to choose between eating junk food that really tastes good and feeling like garbage, vs eating a healthy diet and feeling better. Not to mention, junk food doesn't even taste good to me anymore. I've learned how to make lots of recipes that follow my diet and taste amazing. I didn't give up good food. I simple learned what really good food tastes like. The food that tastes good to me is clean, organic, and fresh. The way that food should be. Think of it this way: If there's a small "health food" section in the grocery store, then what does that make the rest of the food? For me personally, I don't live to eat. I eat to live. I just want to be healthy again, and I want to see my loved ones healthy as well. If that means changing my diet for a healthier lifestyle, then it's completely worth it.
5. There is always something you can do to help.
"I wish there is something I could do to help." There is always something you can do to help! If there is someone you know and love that is sick with something as horrible as a chronic illness, YOU can do something! Most of us simply ask for compassion. By compassion, I don't mean just feeling for sorry for us. Nobody likes to be pitied. True compassion is charity, benevolence, kindness, and love. We just want to know that we're not alone in this. That we have support. Everybody wants to feel loved by the people that surround them on a daily basis. That doesn't magically change if you get sick with a debilitating illness. Pick up the phone! Send a text of love and support! Show up on their doorstep and talk to them and show them that you love them and you want to see them get better! It's so much easier to feel like you want to live through pain when you feel like you have people that actually want you alive. True love, Christlike love, love for your neighbor, your friends, your family, charity should always be extended to all. Even if you don't know what someone is going through, the impact you have simply by talking to someone and loving them like Christ loved people is huge. Being sick doesn't exempt me from the love of others. No matter how awkward or embarrassing it feels to reach outside your comfort zone and offer compassion, it's not. It's an incredibly amazing experience to be able to feel the Savior's love through someone else. We all need that sometimes. There is ALWAYS something you can do to help.
That is really lovely. Here's some compassion for you -- and some love too!
Thank you Mary Beth! Sending love and compassion to you too in your time of need! I hope you feel better soon as well!
Sending you love l, from someone with a chronic neuro immune illness for over 20 years. Don't give up. I believe we lean many lessons and become wiser through chronic illness. ❤️
Thank you Rebecca. I agree 100%.
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