I know this may sound strange coming from someone who has dozens of tattoos, but I am afraid of needles. For some reason, I can stand the discomfort of getting inked, but when my need for needles is related to bloodwork or medical procedures, it gives me a lot of anxiety.
Many people ask me if my tattoos hurt. The truth is that the pain from tattoos and piercing is temporary, whereas the pain from my rheumatoid arthritis (RA) is consistent, as is the need for regular bloodwork and infusions that require me to frequently face my needle fear and anxiety.
I would rather get tattooed than get any medical procedure, especially one that requires needles.
But living with rheumatoid arthritis has forced me to confront this fear, or at least develop some strategies for coping with it.
To even get diagnosed with RA meant dealing with needles, as I needed to work up courage to get the bloodwork that would reveal the antibodies and inflammation driving my rheumatoid arthritis pain. What I didn’t expect was how that test would lead to regular bloodwork, self-injections, and IV medications for the rest of my life.
It hasn’t been easy adjusting to life with RA for many reasons, and dealing with my needle issues is just one of many. But I actually look forward to my IV infusion days now, even though I still have to overcome some of my needle fears — officially called trypanophobia — as I approach my monthly infusion appointments.
Starting Infusion Therapy
Many people with rheumatoid arthritis need to take a disease-modifying medication to quiet their overactive immune system. I’ve started and stopped many medications over the years, trying to find the right therapy that helps relieve my symptoms without causing intolerable side effects. Not long after my diagnosis, it became clear I would need more than oral pills to manage my RA — I’d have to take an injectable or infused biologic drug. My condition is considered moderate to severe and this is what my doctor felt would be best for me.
We finally landed on a medication that is given by an IV infusion once a month. And even though I hate needles, I look forward each month to my “joint juice” because I’ve seen firsthand that not treating my rheumatoid arthritis would cause me far more discomfort than dealing with the needle related to the infusion.
The once-a-month appointment works great for me for a number of reasons. Mainly, I do not experience a medication hangover as badly as I did when I took oral medication for my RA. A medication hangover is a period of time after getting your medication where you feel the side effects the strongest, such as increased fatigue, nausea, dizziness, headaches, and stomach upset, to name a few of the joys we go through with a chronic illness.
I prefer to go to an infusion center where a nurse is responsible for giving me the medication rather than having to self-administer a biologic injection at home. They’re experienced pros at inserting the needle with minimal fuss, whereas doing it at home puts the burden all on me.
Being chronically ill means I end up spending more time than I would like stuck inside. Going to my monthly infusion appointment has become an opportunity for me to get out, chat with the infusion room nurses or other patients, and spend a little time to relax.
Dealing with ‘Nightmare Before Infusion Day’
My issues start about a week before my monthly infusion. Because the medication has started to wear off, I can feel an uptick in my RA symptoms. My pain and swelling increase. I become less productive, thanks to fatigue and cognitive dysfunction. Sometimes I’ll find myself struggling to write a simple email because of that ugly mix of hand pain, brain fog, and unrelenting fatigue.
Insurance reasons won’t let me get my infusions closer together, so that one week is my least favorite week of the month. Ironically, this actually makes me crave my IV infusion while I also experience dread and anxiety because of the needle required to receive it.
I’ve had my fair share of bad experiences when it comes to needles, which is why I experience trypanophobia, along with my general anxiety disorder. Part of my fear of needles came from experiences during my pregnancy. The anesthesiologist tried six times to give me an epidural, I felt those six needles, which means they clearly did not work. I have also gone through many, many times where the nurse has to try two or three times to get into my veins. Most recently I experienced phlebitis (inflammation in a vein) after one infusion, which left me with discomfort for weeks in my injection arm.
These experiences can make me never want another needle again, but I know that avoiding them could cause more chaos and potentially even more needles down the road.
What my fear of needles feels like: Often before infusion day I get nauseated due to anxiety. I have a hard time getting any food down. I might feel dizzy or like I am going to faint. I stay up all night worrying about the procedure. My blood pressure and heart rate go up. I can become irritable.
How I Cope with Infusion Day
These feelings were even worse during the first few years of my having RA, but I have adjusted a bit over time. I still experience the “nightmare before infusion day” feelings, but I’ve developed some tips and tactics for getting through the day without as many jitters. Here’s what has worked for me:
I trust it gets easier
I remember how terrified I was before each needle. My heart would be racing; I would be sweating even in the coldest of months. Before my RA diagnosis I would often need to lie down before blood draws. However, exposure therapy over the years has helped me get through the intense feelings. Because I’ve gotten through it before, I know I can get through it again. Working with a therapist and developing coping skills to help with anxiety helps so much during any uncomfortable medical procedure.
I stay hydrated beforehand
From a practical standpoint, I’ve learned that hydration is your best friend and perhaps the most important thing I can do before infusion day to make it more physically comfortable. Staying hydrated by drinking a lot of water in the 24 hours before the infusion helps keep the veins plump, which can make the insertion of the needle easier and less painful. My favorite routine is to make a coconut water smoothie the morning of my infusion.
I watch my caffeine intake
I used to always arrive at my infusion with a coffee in hand, but that would leave me needing to pee during the procedure. Now, I watch my caffeine intake the day of my infusion. I’ll treat myself to coffee or a matche latte after the infusion if I feel I need an energy boost.
I eat beforehand
Unless you are asked to fast, make sure to eat something before your infusion to keep your blood sugar up. My needle anxiety made this difficult for me, but even a light snack, like a protein bar or apple, will help. Before COVID I would bring some snacks with me to nosh on during the procedure, but now there is a no food or drink policy. That’s another reason it’s a good idea to eat before your infusion if you are there for a while.
I try to get my favorite nurse
I am grateful for the two nurses I see at my infusion clinic. They know me, they know I struggle with needle anxiety, and they try to make the procedure as smooth as possible. I’ve also learned to communicate with the nurse and let them know how I feel. They can’t tell if something hurts or is making you uncomfortable. If you prefer the infusion in a certain spot, tell them. I personally really dislike getting it in my arm and prefer my hand or wrist.
I apply heat
Heat helps plump up my veins and feels good on my arthritic hands. Before the infusion, I run my hands under hot water or create a hot compress with folded up paper towel and hot water that I keep over the area where the infusion will be.
I exercise to boost circulation
I do some wall push-ups in the bathroom right before my treatment. If your wrists hurt too much for wall push-ups, you can bring an elastic resistance band and do some arm workouts with it right before the time of the needle.
I wear something comfy
Always, always wear something comfy and easy. If you wear long sleeves, make sure they roll up. I dress in layers so I can throw on a sweatshirt or sweater if I feel chilly. Medical settings can be cold and the IV can give you a chill. Consider bringing a blanket from home or ask the nurse if they can offer one.
I distract myself and look away
I never look at the needle when they place it in. I’m pretty sure that would make my anxiety far worse. Another trick I’ve been doing for years: I pinch myself or dig my nail into a finger or palm of my hand and focus on that sensation rather than on the needle going on. Another distraction I use is focusing on my breathing.
I plan my infusion at the right time for me
My “best hours” of the day are mid-morning, so that is when I plan my infusion. I don’t have to rush out of the house early. This gives me time to get through the morning stiffness I often experience but not too much time to stew in pre-appointment anxiety.
I clear my schedule and take it easy
I make infusion day all about me. I watch the movies I want to watch, clear my schedule for the day, and order something delicious delivered to my door. I never cook on infusion day. After all, is there any more obvious form of self-care than getting medication to treat my RA, and then giving my body the time it needs to recuperate and recover?
Track Your Medications with ArthritisPower
Join CreakyJoints’ patient-centered research registry and log your medications to track side effects and impact on disease activity. Learn more and sign up here.
