Coping During A Difficult Treatment
By Jordyn | @thechronicallyunimaginable | June 10, 2019
Chronic Illness is a strenuous journey to be on. Whether you are focusing on a more holistic approach, seeking western medicine, or lay somewhere in the middle, treatments are difficult. I've found that to be true for me as I continue to pursue treatment for my Hereditary Lymphedema. I have to be honest about the sheer frustration, rage, and sadness that I've experienced. It's not easy to start a new treatment for a condition. Whether you are switching medications or are newly diagnosed, treatment itself is scary. It is something that we all desire so much, but the journey is often riddled with complications.
I'm about 8 years into my chronic illness journey now and have only just started to receive help for my Lymphedema a little less than a year ago. If you don't know what Lymphedema is, let me give you a short run down of it. Lymphedema occurs when the lymphatic system is interrupted in some way. This produces fluid buildup, usually in one limb. For me, I have fluid buildup in my entire body. This causes universal pain for me all the time. The treatments for my type of Lymphedema include mainly taking an amphetamine and going to special massages. Let me tell you, this past year has been hard. I almost prefer life before all the treatments, because I wasn't in so much pain. This lead me to think, what about others going through painful treatments?
The first advice I would give, is to feel your feelings. Chances are that you've been bottling them up and toughing it through the pain like us chronic illness warriors are known to do. Give yourself freedom to scream, cry, yell, mourn; whatever you need to do. I don't know what this process may look like for you, but I cried, a lot. It felt like I had made it so far and I was not only devastated, but my ego was quite severely bruised to know that this treatment was taking me down. Those moments of anger and jealousy that we all experience, don't overlook them. Just because you may stop thinking about it, doesn't mean that those feelings have gone away. If this means going to a therapist for a while, do it! Get control of your emotions before they control you.
Another piece of advice I learned, is to get connected. Chronic illness often distances us from friends and family. We become isolated and have little to no support system. Get on social media! Instagram, Facebook, and Twitter all have great chronic illness communities filled with supportive people of all different ages. I met my best friend through Instagram at the start of this year. We now talk every day and are planning to visit each other soon! The support that people without chronic illness can give is limited. No matter how supportive they are, they will never truly be able to understand what you are going through. However, there is a world of people that do. People that you can talk to, get advice from, lean on when you're having a bad day, and in general just connect with. The chronic illness community is something special and unique. One that I wish I had joined many years before I actually did.
Whether or not you have had chronic illness for a long time, going through tough treatments make life a source of constant difficulty. You have to adjust to a new version of yourself that wasn't there before. My next tip is to take time to explore this new self. We all have our limitations and our treatment might of created new ones. What do you like to do? Everything can be modified with enough ingenuity. For example, I know a woman with severe rheumatoid arthritis who loved running in awareness races. When her arthritis got to the point of leaving her housebound, she started running virtual races to raise money and awareness for the condition. She may not be able to run the physical races anymore, but the end result is the same. You could even get ideas from your new friends in the chronic illness community!
A great piece of advice that I learned was to change your view! Starting out with chronic illness, we all tend to be glass half empty kind of people. It is completely normal. Even if you had a positive view before, going through challenging treatment can change that. It is vital to look at things positively. I know, it is easy to tell you, but is a grueling thing to do. At the start of my treatment for Lymphedema, I was bedbound. In fact, I was this way for about a year. However, by getting connected and even starting a blog to help other chronically ill people, my view gradually began to change. I found hope every time someone reacted to a post. As it went on, I began to find my will to live through my blog. My desire to help change things for other chronically ill people created my glass half full attitude.
Treatments for chronic illness are hard. They trample, plunder, and beat you down. It may be your first time or you may be a seasoned veteran at this point. No matter which category you fall in, it is one of the most exhausting things we go through in this journey. I personally, will have to endure my painful Lymphedema treatments for the rest of my life. However, I have decided to not let those treatments steal my joy. Am I happy all of the time? No, of course not, but I have the choice in how I am emotionally going to react. I have chosen to keep moving forward. What will you choose to do?
Bio: Jordyn C. is a chronically ill blogger who runs The Chronically Unimaginable. She is very involved in the chronic illness, mental health, and disability communities. Jordyn is an active volunteer for the Chronic Disease Coalition and a Brand Ambassador for Ivye Wear. Her work has been published on The Mighty and on several guest blogs. She is actively looking for opportunities to share her story. You can find her on her blog, Instagram, Twitter, and Facebook.
By Jordyn C