Living with a chronic condition: An invisible battle
"You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it."
― Maya Angelou
The older I get, the more I understand how you never know a person's battles by looking at them from the outside. Someone could be the most beautiful, joyous being on the outside, while internally conquering mountains. The adversities we face can change us forever; whether it be positive growth, or everlasting damage. If you were to judge me solely on this outside appearance, you would think I was a healthy, happy, humorous girl who loved to read and play soccer. I am all of those things, but I am also fighting an every day battle with my own body. I live with Endometriosis and Chronic Pain.
The American Academy of Pain sites that chronic pain affects more people than heart disease, diabetes and cancer combined, at a staggering 100+ million. What many people do not understand about living with pain is that it affects not only your physical health, but your mental health, your relationships, and your overall ease and comfort in every day life. In a 3 year time span during my mid twenties, a time when I should feel the most free and comfortable, I went from traveling when I wanted and never second guessing an impromptu day plan, open to new and unfamiliar relationships, to almost never knowing if I could make a plan, fearing going virtually anywhere, carrying around an injured self-esteem, and losing touch with some relationships I held closest. It was like I was losing myself one day at a time. This horrible torn feeling between trying to live normally, and also giving myself a break to be okay with how I feel, at the same time trying not to being a burden to others.
I have always struggled with a sensitive stomach, and struggled with horrible pain and sickness during "that time" (sorry guys…) I always thought this was normal, what everyone felt. About 3 years ago, I began to experience worsening pain and stomach problems. I was sick all the time, every time I ate almost anything, even when I didn't eat at all. I began losing weight, and in turn, losing energy. I started seeing a new Doctor, where I was poked and prodded, blood test after blood test. Endoscopy, Gallbladder Ultrasound, HIDA scan of my gallbladder, xrays of my stomach, as well as prescription after prescription to try. I was sent to a specialist at Dartmouth. None of these changed a thing, nor produced any positive results. After about 8 months of trying, I told my doctor I didn't want to try anymore medicines or tests, I needed a break. I was now burdened by my regular financial responsibilities, student loans, and now these newly acquired medical expenses. I began to develop not only physical pain, but mental pain as well. My anxiety, previously situation based and quite minimal, began to increase to a really intense level. I feared traveling anywhere out of the unpredictability of these symptoms, I found it hard to make plans because I was never sure if i would be alright when it came time for them, and that in itself caused more anxiety. I became self-conscious of my body, whether it be because of my swollen belly or people constantly commenting on my weight or asking if I was tired, as well as frustrated that people thought it okay to comment on a person for being thin, but wouldn't dare comment on a person's obesity. My relationship suffered, my partner asking me if I was him that was making me feel that way. During a visit to the ER, the nurse told me, "you know, since you're so thin and you have abdominal pain, they are going to be suspicious of an eating disorder". I felt like I had to convince people that something was wrong, because there was no visible, concrete damage, or official "diagnosis". I felt like people didn't believe me, I had to say it before they did. I would make light of it, make a joke, because then I was addressing it, but not making it seem so bad. I was dealing with some personal life stress, so I think people thought maybe it was just stress that was making me feel bad. They would say, "You're probably just stressed. Have you done yoga? Have you tried Gluten Free? Have you thought about therapy?". To humor the doctors, I tried gluten free, dairy free, sugar free, crazy limited diets, different types of meals, smoothies, with no relief. I was referred to a GI specialist, who told me I was probably "eating too fast", and tested me (again) for Celiac disease. I felt like every time I went to an appointment I was starting from the beginning. Repeating myself over and over made me want to scream at the top of my lungs, that I know my body, and I know something is wrong. I wanted to shout out to the doctors, I am in so much pain! Someone please listen to me! Do you think I like spending thousands of dollars? Do you think I like laying in bed while my friends hang out together? Of course not. Don't get me wrong, as much as I felt alone, I wasn't. I have wonderful friends who I have so much love for. I had supportive friends and family, I knew they wanted to be there for me, and they would express concern and understanding when I just couldn't participate in things. Understandably, I think that not having something tangible for them to grasp made it difficult for them to understand exactly what I was going through, and I didn't want to burden them by complaining or explaining too much. I also can fault myself because I tried really hard not to show how bad it really was, I didn't want to be the person who needed so much extra help, I wanted to be "normal" and more care free too.
I didn't want to depend on medicine to feel better. During my time off from doctor's appointments, I tried natural remedies in combination with medicine. I slept with a timed heating pad on my stomach and drank hot tea throughout the day to soothe my muscles from the inside. I would rub Arnica gel all over my belly to numb some of the pain. I got so used to a high level of pain that I could look you in the eye and have a calm conversation with the amount of pain that many people might go to the ER for. I was on prescription nausea medication that made me incredibly sleepy, in combination with an unhealthy amount of Advil, just so I could get through work. I began missing more work because I truly couldn't stand the pain anymore, and I feared losing my job. I would become horribly anxious at night, worried about how I was going to feel in the morning for work. It actually took one of my best friends checking me and saying, "Sam, it is not normal to feel that much pain. I know you can deal with it, but it isn't right for you to live that way." So, I gave up on my Doctor boycott and scheduled an appointment with a new doctor, a Gynecologist in South Burlington. They told me it would be 3 weeks, and I agreed to the appointment, figuring it had been so long, what was a few more weeks? Short story long, I was able to get a sooner appointment, after a terrible episode of pain, I went to the doctor for an ultrasound, she told me I would have to have surgery for a large cyst, and I said okay, and then she looked at me and said, "like…today." and that was the beginning of a whirlwind evening. Three hours later I was getting prepped in the OR for emergency surgery, I had a para-tubal cyst that was cutting off the blood supply to my reproductive organs, and the bouts of shooting pain I was feeling was my ovary flipping the wrong way due to the weight of the cyst. The doctors could not believe I had been functioning this way, and told me this pain is secondary to that of labor. My mom was not able to get up to Burlington by the time I went in, so I was happy to see her when I woke up, and I was so touched that my friends had all gathered and waited until I was done, and so happy to see them as I groggily processed the days events. The most relieving news? I was not crazy! I had a word for at least some of the pain and nausea I endured for years, Endometriosis. I learned that this is a disease that affects women and has no known cause or cure. It is when the tissues that are made for reproductive purposes, mistakenly grow on the outside of the uterus and attach to organs inside the abdomen. It can cause pain, nausea, infertility, anxiety, and many other problems. More info here… ( http://www.mayoclinic.org/diseases-conditions/endometriosis/basics/definition/con-20013968 ) Inside my abdomen was lined scar tissue, from having Endometriosis, which is probably why I felt intermittent pain and nausea, and explained so many times I had been sick during high school and college. My doctor told me that the tiniest speck of endometriosis could cause excruciating pain in one person, or no symptoms in another. The only way to diagnose it is through surgery, and it can be managed with pain meds, hormones and diet changes, but there is no cure. It is something I will live with forever, and over the course of the last few years I have learned more, and learned to adapt.
Since this surgery I have gone through periods of ups and downs. I felt a lot better after my surgery, and then it proceeded to get worse from there. I started going to physical therapy, to try and retrain my muscles to relax, from years of holding them contracted to protect myself. This was informative, but didn't make me feel a lot of progress and was too expensive for it to be worth it since it wasn't doing a lot. This past spring I ended up in the hospital, when they thought I may have appendicitis. It ended up being inflammation related to Endometriosis, and a surgery was then planned for the summer to see if there was any tissue they could get rid of, and also take out my appendix (after much pleading). Leading up to my appendectomy, I was taking probably a bottle of Ibuprofen every 2 weeks, and sleeping with a heating pad on every night. My lovely housemate began to know exactly what I would need, and would heat up my hot compresses or go to the store for me when I could not function. Her help was a saving grace and I feel so lucky to have many friends like her who are there for me when I know it is probably a pain sometimes. Since having my appendix out, (imagine that, I know my own body!) I have felt a lot better since the Endo has nothing to attach to there. I stopped having to take pain med so often, but haven't quite tackled some of the other symptoms, but it is a start.
I think that dealing with this all has changed me as a person. It has let me know that I am a very strong person, but it is also okay to ask for help sometimes, or let yourself be sick. I am so thankful to have finally found Doctors who actually listen to me, and who validate my concern. During my most recent visit with my primary Doctor, she reassured me that my body has endured a multitude of stressful events over the last few years, and will take time to heal. Even just having someone in healthcare recognize that, means the world to me. I do what I can, but also accepted that I am going to deal with this for a while, and it will have its ups and downs. I eat a healthy diet and avoid foods that I know make me feel bad, I take vitamins and supplements, and I exercise with soccer, yoga, and outdoor activities. This past year, I conquered a big hurdle and began taking medicine for the anxiety, something I was extremely resistant to, but ultimately I realized it it can help me, and it is not forever, and upon researching, I found that it is very common for people with chronic conditions. Some days I feel completely fine, others I cannot even get out of bed, but I realized that being positive is one thing that I can control, and i try really hard at that, even when it is hard sometimes.
I try to explain it to people close to me so that we can understand each other, and I hope that reading this allows the reader to reflect on a person they may know or even their own personal experience with a chronic condition. These things do not define us, they are just a part of our lives. A few things I can say from my own experience…
1.We do not want to feel this way. It is not fun, it is not for attention, and we probably feel like we let people down when we are unable to do all the things we want to. There are times when I feel so down, like I will never feel better, and wish to just feel normal. Sometimes we have to cancel on things we really want to be doing, and it feels so crappy to do that.
2. It is scary for us to branch out of comfortable things, or be spontaneous, please be patient. Understand that something simple may be a big change for someone dealing with a chronic condition, as the unpredictability of things can harbor a lot of anxiety.
There may be nothing you can do to help, but know that just offering is what we really need. Acknowledging that a person is feeling bad, and it may be for no explainable reason, is more meaningful than anything sometimes. Having someone listen or believe me was one of the biggest things I appreciated during this whole journey.
3. If you have a question, just ask! A lot of times, people dealing with chronic conditions don't want to be a burden on others, we don't want to complain or make others feel bad, so we may seem fine when we are not really feeling great.
If there is something we can do to make things easier for you, or to communicate better, let us know . I know for me it is a hard balance, I want to make sure that my friendships are full of good times and laughing, I don't want to bog things down with my stuff, and I want to take advantage of all the time I have with people I love. But I want to make sure that I am not holding back or closing myself off either.
4. We cannot do it without you! Any support, any time spent listening, or a favor to help us, a message or visit when we are sick or in the hospital, means so much. Sometimes it can feel really lonely or like no one understands, but it is good friends and family that make it known that it isn't just us alone.
Hopefully I won't have any more surgeries, but it is very possible. I have scars on my stomach which remind me of what I have been through, and that I can overcome adversities and still live a nice life. If you are dealing with a chronic condition, advocate for yourself, it may mean the difference between health and sickness, don't stop pushing for yourself. Take advantage of the support you have around you, and try to stay positive. If you know someone who is dealing with a chronic condition, whether it be physical, or mental, let them know you are there for them. Your small act of kindness will go further than you can imagine.