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Illuminating the Dark Side of Life With Chronic Illness

Today, I am writing a blog post that I’ve been wanting to write for a while but have just been putting on the back burner. But, now is as good a time as any to finally share it with you.

Often, when someone is diagnosed with a chronic illness, the symptoms develop unexpectedly. The shock of being healthy to all of a sudden being unwell, with having your life change overnight, can be overwhelming. People often go through a period of grief over a life that has forever been changed and a future with so much uncertainty. Life can often feel like it is out of control.

My life was just starting to get back on track after my divorce and my recovery from my spinal cord injury was going amazing. I progressed from a wheelchair to a cane, to just a brace. “My life seemed to be perfect,” as I had thought, at one time. But, what is perfect? It’s weird how we do that when things are good. We will say, “Oh, this is perfect.” But it’s so perceptive to the time.

Then, just like the track my life had been on, it came to a hurtling stop and crashed when I got diagnosed with multiple sclerosis. I had known there was something going on and I had this gut feeling that I had MS but, I kept telling myself that I didn’t and that I would be just fine. That it was just AA or CES or that I was tired.

I had every emotion you can think of. I was happy because now I knew what was going on, pissed because I had worked so hard to get where I was with my spinal cord injury and I thought all my hard work was for nothing, and sad and lost because had I no idea what this disease was going to do to my body or what was going to happen next. All I knew was the worst of the worst about it and that I needed to be put on a disease-modifying drug for the rest of my life.

After I found out, that day, I sat in my car alone for hours, not wanting to go home with all the things the doctor told me repeating in my head. I sat there, researching anything I could to help me gain an understanding of what I was going through.

I found a support group and that was one of my saving graces — having people that were going through the same thing. As with a lot of people with chronic illnesses, it is hard to talk about what you are going through to other people in our lives. Sometimes, it’s because people just don’t understand what you’re going through or because sometimes it is nice to have someone else to talk to who is outside your immediate family. It’s also nice to just be part of a family that’s full of people just like you who are going through exactly the same thing. Where you can share your ups and downs. Your questions. Your good days and bad days. In this world, we can be ourselves, share the good, the bad, and the ugly with each other, and no one will judge one another because we have all been there.

After you’re diagnosed with chronic illnesses, there are gonna be some bad days. When you’re diagnosed with a chronic illness, it usually isn’t pretty. You have to deal with a lot of difficult stuff. You have countless days where you have no energy, and face an ongoing fight with your body to keep it healthy. This is the dark side of our illness. This is the part we like to keep tucked away. Who wants to share about the bad days and the hard stuff? So, most of the time, we keep what’s going on with us close to the chest.

Having a chronic illness can impact a person’s ability to live their lives the way they otherwise would. Chronic pain is commonly associated with chronic illnesses, as well as enduring fatigue. Even on days that aren’t overtaken by pain and chronic fatigue, we often have a limited amount of energy and reserve for the day. We have to be very careful in deciding what to spend our energy on. Every activity and task we do throughout our day will drain that energy.

The truth is, most people aren’t privy to the daily struggles of someone with a chronic illness. Unless they are your family or you are very close to them, you will normally only see one side of their life. The side we show, naturally, tends to be on the better days. I tend to not go out much when I’m sick or even let others really know when I am.

When we have better days, no one wants to focus on what their body is going through and the symptoms they are still experiencing. They just want to have a good day!

I know I don’t. When I’m having a good day and my body isn’t fighting back with me, I want to make the most of it. I don’t talk about how I’m feeling or what’s been going on with my MS unless I am asked. Even then, I’d often downplay it because I didn’t want to make things about me or feel pity when I told them what was going on. I just want to have fun like everyone else. We all do, we don’t want to talk about the crap we have to live with all day long. We just want to enjoy ourselves and spend time with our friends and family.

Instead, I choose to enjoy myself when I can and I look good while doing so! If you didn’t know me, you wouldn’t know that I had a chronic illness.

Most chronic illnesses are invisible; there can be no instantly recognizable symptoms or signs of sickness. On the surface, we can look completely fine or just have something that slightly gives away our hidden struggles. But, otherwise, no one knows the battle we wage with our body day in and day out. This can be a double-edged sword for most people with chronic illnesses. We all like to look nice when we can. We all want to look good and “presentable.” I know if I can help it I don’t want to look like a hot mess. But, it can be incredibly frustrating or feel dismissive to hear people say, “You don’t look sick,” even if the sentiment is well-intentioned.

But we are…

Most of us have become used to ignoring ignorance, smiling through the pain, and getting on with it. On the days when this isn’t possible, you’ll find us at home, in bed, on our couches, and battling the monsters within. Resting, trying to regain the energy to get back to our lives. We have resigned to this reality in which we exist.

This is this dark side of chronic illness which is not always easily shared or shown. But, to every dark side, there is a light side battling back, evening out the world we live in. Remember to look for the good through the bad. Soak in the good days and make the most of each moment.

Getty image by Renata Tyburczy.

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