chronic illness vs. school

Regardless of whether you are in middle school, high school, or college, school will always be a challenge for those with chronic illness that many people are not aware of. People are often not aware of the challenges we face because we are so good at hiding them from others.

Today was a big day for me. I never wanted to tell my professors that I had lupus because I did not want to feel different from everyone else. I did not want to feel like I needed special treatment. Today I did just that. I told a professor that I had lupus. A professor who teaches many courses in my major, a professor who I have now had for the third semester in a row, who knows exactly the kind of student I am and how much I care about my grades. I first e-mailed her about meeting up to discuss that I have lupus and my grades are declining in her class because of the constant fatigue and brain fog that makes it extremely difficult to study, especially for a class where your grade relies only on quizzes and exams.

I felt as though I had given up on myself. I felt weak that I couldn’t just suck it up and study harder. I was wrong.

I nervously walked into her office and took a deep breath and told her everything that was going on. I am not sure why I expected her to not react well and to tell me something like “study harder”, but she reacted in a way that made me feel a lot better. She was completely understanding and helped me figure out different study skills that may be more beneficial to me. She also offered me the opportunity to take tomorrow’s exam on Monday instead. She knows that I am a dedicated student and she knows that I really do love my major.

I think it is very important, after today, that if you are struggling because of your illness, do not be afraid to speak up to a teacher. They are educators, they care, they want you to do well and succeed. I am sure people have experienced not as positive responses from teachers; however, it does not hurt to try and speak with a professor, especially one that you are comfortable with.

For those with chronic illness who have worse symptoms than I do, I and so many others have so much respect for you. It is quite the process going through school while dealing with an illness that effects a person every single day of their life. I know that for myself, school sometimes feels impossible. To everyone struggling as well, do not push yourself too hard. If time off is required for yourself, give yourself that time. If you feel as though school is still possible, maybe with just a few moderations, try and make that happen. It can never hurt to talk to someone, whether it’s your professor or disability services.

Don’t let your illness stop you from fulfilling your dreams, let it motivate you.

“are you sure it isn’t just…”

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“Are you sure it isn’t just a deficiency?”
“Are you sure you just aren’t getting enough sleep?”
“Are you sure it isn’t just a food allergy?”
“Are you sure it’s lupus?”

In the short time I have been diagnosed with lupus, it’s ridiculous how many times I hear people ask me things like this. To give you an honest answer, I match the criteria for lupus. I have positive results on blood work used specifically for diagnosing lupus to prove it.

I understand that people can be misdiagnosed; however, do not try and fight my diagnosis. Do not take that away from me. My diagnosis is the only thing I have to keep me sane. If you have not dealt with the agony of not knowing what is wrong with you, the annoyance of feeling sick all of the time and not knowing why, please do not question my diagnosis.

My doctor would not just give me a diagnosis of lupus for no reason, just to make me feel better about myself. Though I was relieved to finally know what was wrong with me, it was not the most settling news to receive. I have my diagnosis, I am coming to terms with it, I don’t question my diagnosis, so why do you get to question it?

I will never be 100%, but I feel a lot better ever since I started treatment; and by a lot better I mean, I still feel pain every single day of my life, I still have fatigue, just not as extreme. If what I am doing is working for me then there is absolutely no need for anyone to question it.

I understand people only say it because they care, because they are “trying to make me feel better,” but there are some things that should just be kept to yourself and I urge you to understand this. Questioning my illness does not make me better and it does not help me. I appreciate the concern, and I say this with complete respect and kindness, I have accepted my illness, you should too.

why I must thank my illness

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At first glance you might think, “…thank your illness? What for?” I am not thankful for being sick. I am thankful for everything it has taught me and the strength that it has given me.

I am 20 years old. I am working on completing a bachelor’s degree and then proceeding to work on a master’s or doctorate degree (haven’t decided yet). I have so much of my life ahead of me and I am not about to have my illness hold me back from fulfilling my dreams.

My parents are both deaf and for the longest time I knew I wanted to work with deaf people and with other people who have trouble communicating. When I discovered my major, communicative disorders, I knew then and there this was my dream. For now I have to decide whether to pursue Speech-Language Pathology or Audiology; however, what I do know is that both professions mean a lot to me and I truly do feel connected to both.

The reason I have shared this personal part of my life outside of my illness is to show that I have dreams that mean a lot to me. Dreams that I know I was put on this earth to fulfill. Dreams that are not going to be shoved aside or neglected because of a setback in my life I call lupus.

Lupus has made my motivation to fulfill my dreams stronger than they already were. Lupus has made me stronger all around. My illness does not control my life and I will never let it control my life.

The strength that lupus gave me does not stop at making my dreams stronger. My mind has expanded in ways I never thought it could. What I have learned is that when circumstances are not ideal, it gets better. Everything always gets better. Circumstances may get rough again, however these rough patches make me stronger. I have learned that there will always be people who have it worse than I do, so I remind myself to stay positive even when it feels impossible to because turns out, a negative mentality actually makes me focus on my malaise more.

For those of you who have a chronic illness who feel as though it only has a negative impact on your life, I invite you to think as hard as you can about the positive things it has done. For me it has taught me many things and has made me stronger as a human being. Actually, it would be great for anyone who sees this to share what your illness has done for you positively so that all of us “spoonies” or anyone with a chronic illness can see the brighter side of things and keep our heads up because regardless, life is beautiful.

“Stress without Distress”

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“Stress without Distress”- Scientist, Hans Selye

I have to remind myself of these words every single day. Ever since the onset of my lupus symptoms, before my diagnosis,  I have found myself allowing stress to control my life. I mean it’s easy to when you are facing so many more daily obstacles than you’re used to and your list of things to stress about grows every single day.

It will never be easy to deal with chronic illness; however, take a step back, breathe, and realize how strong you are. We go to school, we work, we socialize, we do all this while battling an illness. If others do not show you the respect you deserve, I will because I know what it’s like. We have a lot on our plates.

We face stress every day, just as everyone else does, only in a different way. We all know that stress does terrible things to our bodies. Before lupus I would have never seen myself as an anxious person but of course now that I have lupus, I get crushing chest pains and my throat tightens when my mind drifts. Just as I never could have expected to be faced with lupus, I also never would have thought that I would need medication for anxiety, but of course that has happened too. For me, when I feel stress I feel pain.

I’m sure it seems as though I have a negative outlook on the whole stress-factor and anxiety. I do. Lupus is terrible. Anxiety is terrible. However, I am teaching myself and learning about how to help myself cope with the stress and anxiety without letting myself distress about it. This also allows me to help others cope with stress by sharing what I have learned works for me. After all, everyone deals with stress.

A few things that work for me are:

  1. Breathing exercises (sometimes when my mind does not shut off, I just need to tell myself “breathe” continuously and not allow my mind to drift)
  2. Yoga (this goes along with breathing, but it also allows your mind to focus on nothing but your body)
  3. Running (the only way this works for me is with music)
  4. Sports/hobbies (my hobby is soccer, even if I’m just shooting at a net by myself, it helps)
  5. Reorganize (either your desk, or your room, it helps me relax and feel productive)
  6. PMA (have a positive mental attitude, if you are in traffic and are running late, be thankful you are not part of the accident rather than stressing out about being late)

There are some things on this list that are sometimes difficult because of lupus, like running and soccer. Even though those have been hobbies of mine for the longest time, sometimes I just do not have the energy or I am in too much pain that day to do either of those things. However, when I can, those are two of my favorite things to do to relieve stress while getting in exercise that is crucial to my well-being.

For those of you with a chronic illness who feel as though stress is worsening your condition, even though it is difficult, do what you can to destress yourself when possible. Do not be afraid to do something for yourself. One of the toughest transitions we go through when being diagnosed with a chronic illness is making sure we spend more time taking care of ourselves. Care for yourself and stay positive!

a new beginning

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I have finally been diagnosed with lupus after going through symptom upon symptom since around last Thanksgiving. It started mainly with fatigue and weight loss. I knew once I felt I could never get enough sleep, when I lost 20 pounds without trying or changing my lifestyle habits and feeling almost as if I had the flu every single day that something was totally off about my health.

Since January I have had continuous tests and had way more doctors appointments than anyone would want to bother with. It went from my bloodwork, to a rheumatologist visit that dismissed my malaise as a lingering virus, to a ton more bloodwork, to visits to my primary care doctor every time I got another symptom that was concerning, to an MRI on my brain to check specifically for MS, to finally finding the right rheumatologist and getting my diagnosis.

I now know what it feels like to be constantly frustrated by negative results, to know something is wrong but to continue not to have an answer or a reason behind it. For anyone who is going through or knows someone who may be going through something like this, you’re not crazy. Be persistent and don’t give up. I had decided if I did not have an answer from my last rheumatologist visit, I would stop visiting the doctor and eat extremely healthy. While now that I’m diagnosed, it’s important to maintain a well-balanced healthy diet, never give up. Don’t try and diagnose yourself, but a little research doesn’t hurt if the doctors aren’t getting anywhere.

However, it is SO important you find a primary care that you trust and are willing to discuss EVERY symptom you’re feeling. It is also important to keep a list of all of your symptoms and to keep note of when a symptom goes away and when one is added to the list. This helps the doctors so much and it is very easy to forget even a major symptom of yours when you’re at the doctors (especially when you have brain fog or get overwhelmed with explaining everything you feel, which can be tough). Also don’t be afraid to bring someone to the doctors office with you. I am sure I would have found my diagnosis with my new rheumatologist regardless, but having my grandma with me in the doctors office was very helpful because she was my advocate to explain that I’m not my normally extremely active self and something is really wrong and I can’t afford to be pushed aside again, especially before starting yet another semester of school. She was also very helpful in pointing out different symptoms and helping me remember some that I hadn’t even added to my list.

I’m sure everyone who has gone through this can agree not to give up and to be persistent and go into full detail because the doctors can’t tell exactly how terrible you’re feeling because with an invisible illness there is no way of knowing. Don’t give up!!
Also thank you to everyone who has dealt with me yapping about my crazy symptoms, you saw me at my worst. Thank you to my primary care doctor for the drive to figure out what was wrong; it turns out it was autoimmune all along, just like we originally thought! I am going to try and stay as positive as possible as I start my journey to treatment. For those who are going through this don’t give up, your illness doesn’t define you!