Guest Post: Arthritis Awareness Month and a Personal Journey

Today’s post is written by Elizabeth Bender, this blogger’s daughter.  Beth was a contributing author in “Wherever,” published last month.  She currently attends Baylor University and hopes to be a Child Life Specialist when she graduates.  Many thanks to Elizabeth for sharing her story and insights!

May is Arthritis Awareness Month. I want to share my personal story with how arthritis has impacted my life and how I live with it as a part of who I am, but not letting it control who I am.

I never thought that I being 20 years old would have to deal with arthritis. Arthritis is an old person issue, right? Wrong! In fact, over 100 different forms of arthritis exist impacting individuals of all ages. Each form of arthritis affects individuals in different ways. I personally struggle with reactive arthritis.

Reactive arthritis occurs because of infections that attack the joints. A range of infections can bring about reactive arthritis. My reactive arthritis comes from strep. So my actual diagnosis is post-streptococcal reactive arthropathy. In October 2015, I was diagnosed with strep and was put on an antibiotic. Unfortunately, I then had recurring strep infections throughout the fall.

I continued to struggle with a sore throat, body aches, and extreme fatigue (I fell asleep on the bathroom floor one day during a class). I was then told I had some bad virus that was taking months to go away. The sore throat went away, but my body aches did not! Specifically the joints of my wrists, fingers, ankles, and knees were in great pain. There were days where I wasn’t sure if I could get out of bed, but I did! Finally in February, I was referred to rheumatology by my primary doc.

After a few appointments with him and a bunch more blood work, I finally had a diagnosis and an action plan. My strep antibodies were elevated, but no strep bacteria. The strep antibodies attack my joints which is what causes the arthritis. My action plan included monthly penicillin shots for 6 months to five years to lower the antibodies and continuing pain meds with evaluations every once and awhile.

I have now received three penicillin shots and have noticed some improvement. However, those days of not being sure if I could get out of bed are not gone. I still have those days. I am pretty much constantly in pain. It just ranges in severity. Constantly being in pain has the side effect of extreme fatigue; however, I am learning how much sleep I need to make the next day go better. I have tried to not take pain meds, and it doesn’t always work. Some days, I am unable to get my shoes on because of the swelling of my feet (this really bothers me when I want to wear a certain pair of shoes with my outfit!).

When I go to bad at night, I never know how I will feel when I wake up the next day, but I live each day to the fullest that I am possibly able. I have chosen to not let my pain take over my life. I finished two semesters of college when many people told me that they would have just dropped out and wondered why I did not.

I choose to do daily activities and go out with friends and put a smile on because I am happy and I want to do the things that make me happy. Some days I have to alter what I do, but I do what I want to do within the constraints of what my body allows.

Over the past seven months, I have had to redefine what normal is to me. There are days where I wish things would just go back to normal, to the way they were back in October before I first got sick. I am learning, however, that that definition of normal is gone.

This state of being is my new normal and I am learning to accept what this means. I am constantly learning and re-evaluating in my life to understand my own feelings and attitude towards my struggles.

At times, I realize I need to adjust my attitude and once again focus towards the positives and good things in my life.

I find that often it is not the fact that I have reactive arthritis that I struggle with the most, but it is rather how other people interact with me that I struggle with. Many people know that I have been sick, but few people understand that I continue to be sick and that I may struggle with this for a long time. My least favorite comment I frequently receive is, “You are looking good,” or some variation of that phrase. It can be hard to hear this when I am constantly in pain. I do not like talking about myself and the pain I am, but sometimes I wish that people just knew so that I do not have to “endure”  these types of comments.

Living with asthma, chronic kidney stones, and reactive arthritis has taught me something I think is particularly important. Everyone deals with different problems whether emotionally, mentally, or physically. Many people believe that they should not discuss their problems because other people deal with issues that are “worse” in comparison.

While I think it is important to have a healthy perspective on one’s own problems, I fear too often we do not welcome discussion of problems because we constantly play a comparison game. I hope that everyone can find a place where they are comfortable to discuss what they are going through no matter the “size” of the problem and receive support to help them through it.

I want to reiterate that over 100 forms of arthritis exist, yet few methods of treatment or prevention exist for them. May is Arthritis Awareness Month. I hope you seriously consider what you can practically do to raise awareness for arthritis and medical research for this condition that affects people of all ages.

Perhaps you do not feel passionately about arthritis.  I encourage you to find something you are passionate about and create awareness for that issue so that working together we can make the world a better place.