Hayden Adams – Young Patients' AREA

Giving Lupus a Purpose

When I was 15 years old, most days followed the same schedule: wake up, go to school, a couple hours of soccer practice, a few more hours of karate class, go home, do my homework, and then off to sleep. I was the epitome of “student-athlete” and was having a rather successful competitive year; just that summer, I had traveled to Okinawa, Japan to compete in an international karate tournament, and won second place in full-contact knockdown fighting! Honestly, I was in the best shape of my life.

So when I started experiencing knee pain a few months later, there was no real concern; soccer and karate will do that to a person. But then my knees started REALLY hurting… and my hips, and my ankles, and my shoulders, and my hands. Every joint in my body ached, and I went from running and kicking to practically bed bound. I was also tired… ALL the time. I was sleeping in class, skipping sports practices for naps, and sleeping more throughout the night. On top of all of that, I was having migraines every other day and my mouth was riddled with sores, making eating very unappealing and causing me to lose weight fast. I went from very healthy and active to, well, not.

These symptoms continued building up and worsening over the span of a month, until I finally saw my pediatrician. After listing all my symptoms and drawing some blood for lab tests, I just had to wait. Those three days of waiting seemed like the longest three days of my life. Finally, the doctor asked my family to come in to discuss my results. Right then I knew, it couldn’t be good; you can share good news over the phone, but bad news is always given face-to-face. I remember how silent the drive to the doctor’s office was and how sure I was that I had cancer or something.

We sat down in the exam room and my doctor told me that my results pointed to two potential diagnoses: leukemia or lupus. All I knew was that leukemia is bad and lupus was… well I had never heard of that before, so I had no idea. My doctor drew some more blood to send to specialists for a second opinion, and again, we just had to wait. So, in those days of waiting, I filled my time with research. I tried to learn everything I could about leukemia and lupus: what treatment looked like, disease prognosis, and potentially my remaining life expectancy.

On Tuesday, October 17th, 2017, I finally received a diagnosis.

Systemic Lupus Erythematosus: an incurable autoimmune disease that causes my immune system to attack the healthy tissues in my body. This is what was causing all my pain and fatigue, and after some more testing, we found out it was attacking my kidneys as well. While this disease has no cure, it could be managed with a concoction of various medications, so I started treatment as soon as I could, and have been taking handfuls of pills every day since.

I thought that a diagnosis and treatment would give me relief, or even hope. But all I remember is feeling helpless.

I thought that my life had been ripped away from me; I was only 15 years old and this news was going to change the rest of my life. I was an athlete with an autoimmune disease that caused severe joint pain; the one thing I loved was now just out of reach. There was nothing I could have done to prevent myself from having lupus, and there was nothing I could do to make it go away. I could take my medication and go to my appointments, but there was no guarantee that it would make anything better. The next few months blurred together as I just moved through the motions, still processing that this was my new life.

I hate to think that having lupus gives me a purpose, because I know that I could live a meaningful life without it, and I would jump at the opportunity to experience that. However, I hated the feeling of hopelessness, so I decided to give my lupus a purpose.

Near the end of 2017, my rheumatologist asked me if I wanted to join her at an advocacy opportunity: the Lupus Foundation of America’s National Lupus Advocacy Summit in Washington D.C. Here, we would meet with members of Congress to advocate for federal funding toward research, and policies to improve the lives of people with lupus. I don’t know why she thought I was qualified to do that, but she assured me that all I had to do was share my story, to tell them about my experiences living with lupus and how my diagnosis and treatment affected my life.

After much convincing from her and my family, I agreed to give it a try, and in February 2018, I attended my first summit. This was my first time talking to other people with lupus, really sharing my story, and seeing that I could make change. I felt seen, understood, and empowered.

I continued doing more patient advocacy work by attending more Lupus Foundation of America summits and fundraisers, working with the Childhood Arthritis and Rheumatology Research Alliance, attending research conferences alongside physicians and researchers, and participating in research studies. More projects, more opportunities, and more connections eventually led me to the Young Patients’ Autoimmune Research and Empowerment Alliance.

I joined Young Patients’ AREA in its very early stages. My only goal at that time was to help make information about healthcare and research accessible and exciting for young patients, and I instantly knew that Young Patients’ AREA was a group I could do that with. I have been so fulfilled by what we’ve been able to do over these last few years. I remember being a newly diagnosed patient who didn’t know how to navigate the healthcare system or research surrounding my disease. I remember feeling like my experiences were not being acknowledged and that doctors and researchers didn’t understand me. I remember how empowered I felt once I learned how to advocate for myself within healthcare and research, and saw that my voice was being heard. And I am so glad that I can now provide knowledge, encouragement, and a voice to others.

If you had told 15-year-old me that I would have a degree in communication studies and public health, working with multiple health organizations as a patient advocate, traveling to research conferences around the country, and writing blog posts to inspire other young patients to get involved… I would probably laugh in your face. But here I am. And I wouldn’t want to be doing anything else.

Coping with Needle Phobia

Once a week, I stand in front of the mirror, holding an autoinjector inches away from my stomach, frozen. All I have to do is push the needle into my skin and let the device administer the medication for me. I look into the mirror and say to myself, “It will only take a few seconds. It will all be over soon. It won’t even hurt that bad. Come on, you can do it. 1, 2, 3…”

I have been taking that medication every week for the last three years, but I still freeze every time. There is something about the needle that makes my heart start racing and my stomach turn. While I feel uneasy administering my medication, there are millions of people who would be unable to do it at all, because they experience needle phobia.

What is needle phobia?

Needle phobia, or trypanophobia, is an extreme fear surrounding needles and injections. According to the Centers for Disease Control and Prevention, this phobia affects about 2 in 3 children and 1 in 4 adults, and can cause symptoms such as anxiety, nausea, dizziness, low blood pressure, and fainting.

This fear not only causes discomfort and anxiety for those affected by it, but it can worsen their health outcomes as well. Some people are so fearful of needles that they choose to skip vaccinations and doctor’s appointments just to avoid interactions with needles. However, needle phobia is especially burdensome for people living with chronic illness as needles are hard to avoid. They are often used in blood draws or to administer medication; things that cannot be skipped without compromising one’s health.

So, as individuals living with chronic illness, how can we improve our experiences surrounding needles and learn to cope with our fear?

What causes needle phobia?

While there are many different reasons that someone may be fearful of needles, here are some of the most common causes of needle phobia:

- Anticipated pain associated with needles and injections.
- Negative past experiences involving needles.
- Anxiety surrounding needles and lack of control during procedures such as blood draws.
- Natural vasovagal reaction, or a sudden drop in blood pressure at the sight of blood and needles, sometimes causing fainting.

Regardless of the cause of your needle phobia, it is important to remember that the feelings you experience are real and valid. However, recognizing the cause of your fear may be helpful in finding coping strategies. For example, my biggest fear during my injections is how painful it might be. By identifying this, I can focus on strategies that will help me alleviate pain during my injections, making the whole experience better.

Strategies to cope with needle phobia

Because interactions with needles are unavoidable for people with chronic illness, developing useful coping strategies is important, as it can help you feel more comfortable when facing needles and, over time, might help you overcome your fear.

If you are fearful of the pain associated with needles, it is important to remind yourself that the procedure involving the needle (vaccine, blood draw, or injection) is only temporary. Additionally, you can ask your healthcare team for topical anesthetics, such as cold spray, to numb the area being poked and reduce pain. When doing injections at home, you can also use ice to numb the area being injected. My healthcare team offered cold spray when getting my first intravenous infusion, and the spray completely numbed my arm; I had no idea that the needle had been inserted until I looked down, and it was already done!

If you have had negative past experiences with needles, be transparent with your healthcare team. Let them know about your fear of needles and poor past experiences so that they can work to create positive experiences for you. Another strategy is to associate other positive experiences with needles and those procedures. I have made a habit of getting myself a sweet treat, such as coffee or ice cream, after my appointments or injections. That way, I have something to look forward to before the procedure, and I focus less on the needle.

If you experience anxiety during procedures with needles, try using anxiety reducing strategies, such as slow, deep breathing. You can also distract yourself during the procedure; try talking with the people in the room, looking around the room, or visualizing yourself in another location doing something else. I often find myself reading the different posters around the doctor’s office during blood draws or infusions. Another strategy is to bring family or friends to your appointment or to ask for their assistance in administering injections at home; their support can help ease your anxiety.

If you experience lightheadedness or fainting around needles, inform your healthcare team of this before your procedure. Ask if you can lay down before and during the procedure, and avoid looking at the needle, as this can trigger lightheadedness. To prevent a drop in blood pressure, try practicing progressive muscle relaxation. To do so, choose a muscle group to contract, such as your legs or abdomen, and hold the contraction for 10 seconds. Slowly relax and stay relaxed for 20 seconds. Choose another muscle group to contract and repeat, but remember to keep the area being poked relaxed. The contraction of muscles will increase your blood pressure, and repeatedly contracting your muscles will help keep you distracted. If you are unable to administer your own injections due to lightheadedness and fainting, talk to your healthcare team, as they might be able to offer assistance or other treatment options. You can also talk to your family and friends and seek their assistance in administering your injections. For the first few months of my injections, my dad did them for me. Having more exposure to the injections with his help eventually gave me the confidence to administer the injections myself.

Moving forward

While these coping strategies might not make your needle phobia go away, over time, you might find that your symptoms start becoming more manageable. When I first started my injections, I thought I would never be able to do them on my own, but now, all I need are a few deep breaths. Living with a chronic illness has its many challenges, and needle fear may be one of them, but it’s not a challenge we cannot face and overcome.

Author: Hayden Adams