Getting a diagnosis of a chronic, incurable illness is a pivotal point in the timeline. A diagnosis seems like the end of the road, the question is finally answered. However, it is really just the beginning of the road. A road filled with scary symptoms, unknown side effects, and countless hours spent at appointments. I’ve had autoimmune disease my whole life that has brought lots of ups and downs. I wrote this to explain how I found ways to cope with my chronic illnesses.
Now, not all of these are practical and some I am still desperately working on. I just want you to know you are not alone on your health journey. I am sharing my experiences in hopes that you can relate and find comfort, or to also offer advice.
Where To Begin?
Whenever I am diagnosed with something new, have conflicting symptoms, or am beginning to start a new treatment, I immediately turn to Google. I know this can often be a bad idea. I always try not to think worst case scenario, because that is rarely the case. However, I feel the need to be fully educated on all aspects to make the best decisions. That education may come from Google, research articles, patient forums, or drilling my doctors with questions until I understand fully.
I’ve learned that fully understanding my disease process has helped me cope with my illnesses. I like control, and when I don’t know what is going on inside my body, that is a TOTAL loss of control. Having the education and understanding of my illnesses allows me to help myself in situations where someone may be unfamiliar with my illness.
Coping With Pain
I wish had I the magic pill for this one, I really do. When I was a child, I had Juvenile Rheumatoid Arthritis. My right knee would swell and become painful off and on throughout childhood. Fortunately, that was the extent of it. I am so grateful I am not currently living with chronic joint pain.
I do have my fair share of being “uncomfortable,” as I like to call it. To me, I feel this way when I am extra swollen, incredibly fatigued, feeling generally sick, or in pain from “hell week.” When I get this way I am so mean. I take it out on anyone close to me, and become this completely different person. I feel so guilty afterwards. This is definitely something I am working on, and trying my best to be gentle.
When I am in pain or uncomfortable, I try my best to cope by making myself as comfortable as possible. It takes a lot of convincing that what I actually need is rest. Scents have always been comforting to me. I will lower the thermostat, diffuse some oils, and watch Grey’s Anatomy for the 15th time. If the occasion calls, I will break out the ice pack. I have to just tell myself, this is what I need today and I will try again tomorrow. It took me a TOO LONG to accept those terms.
Being in constant pain is exhausting. I nearly slept through my last hell week following my site change. It was just a constant, low-level pain. It took so much out of me! I was so frustrated with myself. I couldn’t figure out why I felt the way I did. My pain was significantly better than the last hell week, but still noticeable. I had no energy, no motivation, and crazy brain fog. I’m pretty sure there was one 48 hour period I had more sleeping hours than awake hours. That week I learned the importance of listening to my body and allowing myself to rest.
Setting Boundaries
Once I was able to overcome this uncomfortable hurdle, I found that one of the best things I could do for myself is set boundaries. I am a people pleaser, and a yes person. For some reason, I always felt guilty telling people no, turning down any plans, and feeling like I had to answer and explain every detail of my life when people asked. I made myself so exhausted in the process – mentally and physically.
I learned to say no. To discuss only what I felt comfortable. To turn off the phone, not answer messages, or end conversations. There were many days I just didn’t have the energy to answer a text or a phone call from someone close to me. I learned that I am the only one that has to deal with the consequences. My feelings are real and normal. I don’t have to please anyone else at my expense.
Setting boundaries can be uncomfortable and mean verbalizing your feelings. It is okay to say, “look, I can’t talk about this right now.” You don’t owe it to anyone. Do not put yourself in an uncomfortable situation that will leave you carrying the heavy baggage. Setting boundaries can also mean taking a rain check. It is okay to commit to something one day, but not be able to follow through the next.
You are NEVER a bad person for putting yourself first!
Coping With Lifestyle Changes
With my chronic illness diagnosis came far too many ifs, ands or buts. I had no idea I was as sick as I was, so I had no idea what my limitations were. This also meant I had no idea what my future held. I went from being someone always on the go, to being completely sedentary.
It took me a while to figure out my niche, and where I could fit in in life again. Working my old job wasn’t an option, but I had so many symptoms and so many appointments that starting a new job in a new field was seemed overwhelming and terrifying. I had so much stress and anxiety feeling like a burden to those around me, because I required so much help and could contribute nothing in return.
Many of my old hobbies were no longer attainable either because of physical or financial reasons. I felt like I was crawling out of my skin, and knew I had to do something. That is when I started writing. I opened a word doc, and would just write my feelings and experiences. Finally, I had the courage to write this blog and share my story. What I wrote and continue to write isn’t perfect, but helps get my feelings off my chest and out of my mind.
Before I turned to writing, I tried many things – paint by number, reading, and crafting. At the time, I just didn’t have the patience or attention span to be able to focus on any of that. I do have a love for cooking, but too often my energy level didn’t meet my motivation.
It was a very low point in my life as I felt like I had lost my purpose and had no idea where to turn. My slate was completely wiped clean, and I had no clue how to start over with a future so unknown. After many sleepless nights and trial and error, I have learned various ways to occupy my mind. I just have to take one day at a time, setting short term goals. I do what I can when I can do it.
It is a lot easier for me to hope for the future now as my health is improving. However, I proceed with caution, because I know it can change on a dime.
Coping With Body Changes
I’ve written about my experiences with high dose steroids several times in this blog. I would never wish those side effects on anyone. There is something psychologically demoralizing watching your body change so much so that you don’t even recognize the person staring back at your in the mirror. I’m not talking about gaining a few pounds. I’m talking literally not recognizing the person staring back at you.
Not only did I look completely different, I physically wasn’t the same person I once was. I struggled to walk through Target, to keep up with my friends. I was far too proud and in denial to say that I needed help. On top of that, I hated asking for assistance. This cycle led me to be so physically uncomfortable, because I was so out of breath or my heart was racing. This led me back to mean Emily, because I was so frustrated with my own body.
Assistive Devices
I was too proud and so embarrassed to ask for a wheelchair. I’ll never forget when Chance had to push me through the San Diego Zoo in a wheelchair. The stares I got back, like why does this girl need to be in a wheelchair. Clearly, she can walk. Or in the airport, if I didn’t get wheelchair assistance from one gate to the next I would have certainly missed my flight.
Getting off of an airplane was like breathing through a straw. I was fine during the flight, but once it landed and I had to walk through the jetway I felt like I was going to pass out! To me, it was embarrassing use my oxygen. I hate that I felt that way. Why should I care what anyone else thinks? They have no earthly idea how I am feeling right now.
I definitely still struggle with being too proud to face my limitations and assistance needs. I have learned to be more acceptive of my body, and be proud of my scars. Each one shares a story of a time I was strong and resilient.
Anxiety
Many of my past experiences led to a tremendous amount of anxiety and anger. Everything offended me, and I became so angry. I had just lost my daughter and learned I was very sick with no more light left in my life.
I would worry about so much, always. It was terrifying to make any decisions or commitment. I had lost complete control, and had no idea what to do next. I have such a good support system, but at the same time felt so alone.
It took months for me to finally get my anxiety to a level where I could manage it and learn some self coping strategies. I’m sure that looks different for everyone. For me, it took acknowledging my feelings and that is was 100% perfectly fine for me to feel that way. I was stuck in survival mode for so long, I had no idea how to feel anything. All of those built up feelings were eating me alive.
I become overstimulated very easily and that can also turn into anxious feelings which leads to overwhelming grief setting in. It is a cycle that can easily get out of control. Some days I have to just feel all of the feelings, and that is okay. Other days, I scrub my entire house because it gives me purpose and allows me to have control and comfort.
I am no therapist, but don’t be ashamed to seek professional help if you need it. Be gentle on yourself, and always acceptive of your feelings. They are real, and perfectly normal.
Mindset
I have always been stubborn my whole life. I respectfully never let anyone tell me I couldn’t do something. That made me want to do it even more. I remember telling my doctor, “you need to tell me hard and fast rules, because I will push myself to the max.” That it just who I am. I am goal oriented and strive to overcome hurdles.
I do think it stems from being sick when I was younger. Growing up, I wasn’t always like the rest of the kids, but wanted to fit right in line. I still made every practice, even if I was a few minutes late because of a doctor’s appointment. I had become accustomed to the “kool-aid” coming out of arm during lab draws.
Fortunately, I am strong-willed and determined. I do not let what happened to me define me or weigh me down. After much struggle, it actually gave me even more motivation. To come back stronger, and hope to help others like me. Even though my heart will never be healed.
I actually gained my motivation from other people in the chronic illness community. I started finding Instagram users and Facebook groups filled with people just like me. It helped me gain a new sense of hope. If you haven’t, do some research there are many people out in the world going through similar experiences. You might be surprised with what you find!
Wrapping Up
Sorry this is so long, I have Starbucks in me and I am on a roll! The main point I do want to get across is don’t be ashamed of your feelings. You don’t have to be positive all of the time. It can be exhausting and completely overwhelming. Accept yourself where you are. It is okay to say “this sucks!” Because honestly it does. No one imagined they would be in this situation, I surely didn’t.
Set boundaries, be gentle, and always put yourself first.
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